Austin's IS Journey

Three little words

2011-07-22T12:59:00.004-05:00

(I'm going to copy and paste this one to my fb because I still haven't had the patience to figure out how to link to my feed. That and I don't want to write it twice. lol)

The dust has finally settled in the Burnett household. Back to business as usual after returning home from Detroit last Friday night. I knew it would take a few days to get on here with a recap, but I never intended to drag it out a week. Granddad, I'm sorry I didn't update sooner. I know you check in on here for news and Austin happenings. Unfortunately, I've always had issues with procrastination!

There's really not much to tell. We had the 24 hr EEG, AMT PET scan the following day, and the meeting with Dr. C the day after that. Still no localization, only structural abnormalities depicted in what remains of his left frontal lobe on MRI scan. Not enough. In fact, even with sound imaging, seizure appearance/behavior, he thinks it's bilateral. Not good at all. Especially given the fact he's already undergone surgery. (He mentioned that abnormalities on MRI are likely only the tip of the iceburg -I've heard that one before. He feels there are more that just aren't showing up yet.)

Why he thinks this? Refer to blog post title. Those three little words. Is he talking? Our response: No. Taking his age into consideration, he strongly feels that if he had a normal functioning hemisphere, it would have picked up speech by now.

So...to say I'm a little annoyed is an understatement. After months of email correspondence back and forth, that very simple question was never asked. He reviewed images, EEGs, seizure videos, etc. Never once thought to ask me this question that he emphasized so much as a HUGE factor. Instead, he eagerly told us "they did not take out enough" and "I think we can help, could you come up here for more testing?"...I even asked him why he thought that before making arrangements to fly out there. We'd been through the disappointment once before after much optimism from him. I wanted more concrete evidence this time around that suggested the trip would be worthwhile.

I was very impressed by the hospital staff and even him before our Friday appointment. While we were waiting in the PET center for the scan on Thursday, he walked through and immediately recognized us from our prior visit over two years ago. Very impressive considering our own doctor doesn't seem to recognize us (or just never bothers to acknowledge us) after seeing him for over two years. So, when he came in on Friday, he knew we'd been there before and had flown across the country once again desperately seeking his advice. Not an easy task with a developmentally delayed toddler with daily seizures -physically or financially. He was very distracted throughout the appointment, and I never felt like he was interested in anything I had to say or ask. I got the impression he didn't have a surgical candidate so we were wasting his time.

I left Detroit once again devastated. Not just because there is little left in terms of intervention for us to do to help our son, but also because I felt quite embarrassed. He had a tone about him that implied we were irresponsibly chasing surgery that we had not thought through adequately. He actually asked me (very condescendingly, I might add), "and you want more surgery for him? I would say noooo! He's not talking!" I wanted to begin sobbing that very moment. But...I somehow managed to regain composure and explain to him the series of events that led us there. The doctors telling us there were abnormal areas left, HIM telling us there were abnormal areas left and they could help, absolutely non-mistakable right sided seizures, our email correspondence, etc. All this while he's reading his pager. Then, with me on the verge of a breakdown, fighting back the tears after that explanation, he says, "Okay, great, well sorry we didn't have better news. Have a safe flight back to Texas." I'm in complete shock at this moment. Really? It was as if he hadn't listened to a word I'd said. He was just eager to get out of there and wrap up the conversation. Very disappointing, especially considering how patient, compassionate, and thorough he was the first time we'd seen him two years ago.

Really the only encouraging input we got from him was his recommendation to give ACTH another try. He explained that (even though it failed miserably the first time around) his brain has aged and matured, he's had surgery, and the fact that the post surgery steroid seemed to make a difference, that it would be worth a shot to try it again. Encouraging yet dreadful to even fathom going through that again. More on that later.

That's pretty much it. We flew 2000 miles, spent thousands of dollars, and put our hearts on the line again for him to tell us what could have been easily discussed via email. If he put SO much emphasis on that one factor, why not get that information before asking us to come out for testing? We didn't beg him to see us because we were dying for our son to have more brain surgery. We asked his opinion because we were desperate to help our baby boy. Maybe I'm being overly sensitive given the fact we didn't get the news we were hoping for, but still. If no speech was that big of a red flag, why not ask me that to begin with?

In Detroit

2011-07-13T23:32:00.003-05:00

We're about 10 1/2 hours into Austin's 24 (or less) hr EEG. I honestly was beginning to think I was never going to be able to sit still. We have been going practically nonstop since yesterday morning. Note to self: Never. EVER. Book such a late flight again. In our defense though, we really thought it was logical that Chad could maybe squeeze in half a day at work, come home, get showered and packed, drive the 2 hrs to Houston, catch the nearly 3 hr flight, arrive at 11pm, rent a car, and drive to the hotel, and actually not want to die. HA! We threw out the plan for him to work, but kept the late flight plan. Not again. So, needless to say, we're beat. We finally got settled in at the hotel by 2 am, got up and checked out and headed straight here to the hospital for overnight EEG. Hook up went well, it's a totally different experience than TCH. They don't use the superglue-like goop (we shaved his hair for nothing, because I totally forgot), and they have softer tipped pencils for marking (trust me, that makes a HUGE difference). In Houston, I swear they're nearly drawing blood with their pencils. On the downside though, the camera doesn't follow him around the room, so he's pretty much confined to bed. Not a big hit with the A-man! Also, unlike at TCH, there must be one parent awake at all times to watch for seizure activity. THE biggest downside! And one of the only things I can say I miss about getting them done in Houston. They let us all sleep!!! And when your kid is getting more tests done the following day...that's a big deal! I think I'm also spoiled to the private rooms at TCH too. ;)

He's finally resting now. Hooked up for 10 hrs before he would actually go to sleep. And after the crazy night last night...I can't believe it took him so long to go to sleep. And it never fails, about 15 minutes into real, honest to goodness sleep -the first wink of sleep for him in 12 hours- they come to get vitals!!! I talked her out of the blood pressure, he would be blowing raspberries and trying to get up as I'm typing otherwise because no doubt that would've been a definite wake up. lol

So, the plan is...get down to PET scan around noon tomorrow and hopefully back to hotel by 4 or 5pm for the night. We'll see Dr. C Friday at 1pm and will be flying out the same evening. What were we thinking??? Uh, saving money...not our sanity! lol

By the way, not even thinking about getting into what my expectations are for our visit here...besides the obvious of getting some answers. The less I talk about it, the easier I'm handling the wait and unknown until Friday.

I hate thinking up titles...

2011-06-27T12:06:00.004-05:00

I seriously thought I was going to get on a better roll with the updates, but nothing major has been happening! Austin's condition has remained fairly consistent with few changes. Seizures aren't terribly high...or low. Head wound appears to be 100% healed, although I still keep it covered with gauze to keep him from scratching again. Health-wise that's about it.

Therapy seems to be at a bit of a stall. He really needs physical therapy again, but the PT at our center is leaving and that leaves us in limbo for the moment until they can get a replacement. In the meantime, we're targeting gross motor in OT. I know, I know, OT is for fine motor, but his tone is terribly low and gross motor is a major issue right now. I'm extremely hesitant to get him back in the previous PT program at our local hospital's outpatient center. We were going 2x a week, an hour commute round trip, and $100/week not to mention the ridiculous gas prices. They did absolutely nothing with him. His OT now is working him much more than the other PT ever did. So, I think I'd rather just wait until we can get him in where we're already going anyway.

As for Detroit, flight is booked and hotel is reserved. Naturally, I waited around until airfare went up, but I'm just relieved fares weren't quite as pricey as the last time we went. So, all is ready and a new travel bed is even on the way. Speaking of beds, I finally broke down and moved him back into his room! Wow, I almost forgot how I used to be able to access my closet without moving a bed or sucking my tummy in to squeeze by it! We also bought him a new bed frame to get the mattress off the floor on Friday. We were so excited to get home and put together his new big boy bed. As luck would have it, we started taking it out of the box and both end pieces were damaged. Nice. Of course that was the last one in stock, so it looks like it will be another 2-3 weeks before the new one comes in. At least now they're going to throw in free delivery and assembly. ;)

And respite. Respite, respite, RESPITE!!!! What else can I say??? It's been amazing! Austin is in terrific hands, he loves his aunt e, and mommy is refreshed and semi-sane again!

Back in his own room with his fishy wishies (aka his fish lamp -lol)

Finding my way back

2011-06-02T18:31:00.003-05:00

I've been trying to talk myself into posting an update for weeks now. I just get in these phases where I want to be as far away from seizure talk as possible. Reminders are not my cup of tea lately. What a year it's been.

Anyway, I got to thinking about my family that I may not keep in touch with like I should. Family that love Austin and want to be in the know and this is the primary source for them to keep up. A lot has happened since my last post so there's no reason for not updating...

First off, we WILL be going to Detroit. Looks like we'll be leaving July 12 and returning July 15. He will have two tests and a visit with Dr. C. An AMT PET scan and 24 hr VMR (EEG). I honestly can't remember whether or not we knew at the time of my last post that he wanted us to come up for testing. Anyhow, he does. I asked him what he was seeing that makes him think they can help and that surgery is a possible option. He responded that they are seeing widespread malformations throughout the remainder of Austin's left frontal lobe and that he underwent only a small resection in that area that did not get it all. The AMT PET is supposedly good for detecting and differentiating between abnormalities and scar tissue. Since Austin has already had one surgery, the scan may aide in determining whether what they are seeing is scar tissue or in fact brain abnormalities.

This is NOT the best timing for us to be going. BUT...is it ever? When is one ready to forge ahead on something like this? Especially when that path has been taken once before and it led to nowhere? I thought about waiting until closer to the end of the year, just to give us more healing time. It's now or never though. There's no sense in putting off more emotional stress. It will ALL have to be dealt with regardless. Sooooo....~sigh~

I've been scouting airfare and hotels...waiting to hear the last final detail so we can book (our actual appointment time with Dr. C on the 15th -supposed to know this week and NEED to know so we can plan our flight out). As of right now, it appears we may end up spending less on 3 tickets than we spent on two the last time we went (Austin was under 2 at the time, and with seats at $600+/ea, he rode in my lap!). Hopefully...fingers crossed it doesn't jump up before we get the final word from Dr. C's nurse. The hubby's working overtime to help cover costs -thank goodness it's available right now, perfect timing! NO CREDIT CARDS THIS TIME!!! lol

In other news...the head looks to be healing nicely. No surgery required but we're keeping it covered to prevent future scratching. It stopped draining and started to scab over just in time.

We're also into Week 3 of respite!!!! OH...I can't even describe the relief this has been! I have one of my very best friends helping me out and it's been absolutely wonderful! It's taken me a while to even realize the possibilities that this opens up. Things I completely forgot about or had written off because of lack of time or guilt. She is doing amazingly well with Austin too, so I couldn't be more excited about the way things are going in that department.

I know I've lost touch with my Blogger friends lately. I've been horrible about updating and I haven't been reading either. Trust me when I say I've never been more overwhelmed than I am right now. I miss keeping up with all the precious kiddos, and I thought I was finally coming around in March...getting back into the rhythm. Before the bomb dropped. I had a new, healthy outlook on my life and the letdowns we've endured, but I never imagined having to start all over. Now I'm just trying to find my way back to our "normal".

Anyway...that another blog and another topic...

Yes, we're still alive

2011-05-10T10:23:00.005-05:00

It's always difficult to get back into updating when I go so long between posts. There's been more going on in the past month and a half than I could have ever imagined. I can't possibly recap it all adequately, but I will try. I guess by just focusing on the most important.

First off, if you read my last entry, you know we were faced with incision complications. We aren't 100% what caused it to flare up and become such a nasty ordeal, but we suspect (along with neurosurgeon) it began with Austin scratching the incision. We'd thought we were out of the woods as far as complications and infections. The incision seemed to be healing beautifully. With that said, it is STILL an issue. So much that we're in communication with neurosurgeon's nurse practitioner nearly everyday, have seen them twice in the last month, have been prescribed five different antibiotics, and are faced with the possibility that he will have to have surgery to get it corrected and check for bone infection. There is a positive side here though. We saw neurosurgeon last Tuesday and decided since it was actually looking much better, we would wait a week after trying a different antibiotic to give it one last shot to heal on its own. I've been having to do wet-to-dry dressings (because of drainage) for a month now and it seems to have helped. One of the wounds (he had two side by side) is completely healed. I'm relieved to say the other has finally started to catch up. We are at the deadline he set for it to stop draining and scab over. He's still concerned, and we will have to see what happens in the next couple days. Hopefully, no surgery will be necessary (although he said it would be a quick five minute procedure).

You'll notice in the photos, there is one showing Austin's antibiotic (Bactrim) related rash. He was on that one for 8 days before it appeared. Serum sickness was suspected so then it was on to a different antibiotic. Nurse practitioner prescribed Cefdinir, the exact one I told her I wouldn't give him due to severe diarrhea and possible link to bacteria infection, clostridium difficile. Oh, and naturally this all occurred on a Saturday. I bought it, saw it, and immediately drove right back through the drive through and told the pharmacist we weren't going to use it. Finally, by that Monday, we got the Augmentin -which he actually finished his 10 day course. Wound still wasn't healed. Last Tuesday, after appointment with surgeon, he chose to put him on one more antibiotic and then surgery if no success. By Friday, we were demanding yet another antibiotic. He prescribed liquid suspension clindamycin. I have never in my life smelled a med so foul and tasted one so awful. That wasn't even the worst part...our instructions were to give 5 mls (that's quite a bit at a time to stomach for Austin), 4 times a day, for 21 days. I found out very quickly that giving it to him straight was not an option. The gag shivers were enough. And that was a pediatric solution! They really must be out of their minds to think a kid can tolerate such amounts for long periods of time. I even tried disguising the taste in applesauce (which has ALWAYS worked) to no avail. So, we finally got a new one yesterday. A capsule. So far no adverse reactions and no problems getting it down the hatch. Fingers crossed.

Amidst all of that, we had concerning post op MRI, medical records and discs to round up for Dr. Chugani, major seizure improvement declining, and the most profound personal conflict I've ever encountered to manage. Oh, and I didn't mention the grueling application process for our state's medically dependent children's program (MDCP). Assessments, forms to fill out, info to fax, info to collect, overnight nursing home visit, etc etc. We're finally done after two months of that. Just waiting to get final papers in the mail and finalize with the home health agency for our respite services. I'm lucky to have been able to choose the person coming in, and I chose a dear friend of mine that I know loves Austin. It may only be temporary depending on other obligations may they arise for her, but it will get us started anyway. I can't even imagine how much lighter my burden will be once I get someone in here to play and help with Austin while I get things done around here. It's no easy task to care for a special needs child while doing everything I need to do. There are always sacrifices. But, maybe this way, I will feel confident Austin is getting all the attention he deserves while having a fairly clean house at the same time! ;)

By the way, I did hear back from Dr. Chugani's nurse since sending imaging discs and records. He wants us to come up for some tests because he thinks there's a possible option for more surgery. Just to clarify...WE ARE NOT READY FOR MORE BRAIN SURGERY RIGHT NOW! It's very possible we will go soon, but only because we owe it to Austin to investigate every available option for him. After our local hospital took 8 months to evaluate and perform an unsuccessful surgery, I thought it was best to get the ball rolling and look into it, so that IF we are EVER ready to go down that road again, we will already know. He's still healing. We are still healing. I wanted to find out now instead of waiting until we're all ready to go through this again and the evaluation process possibly taking months. I'm still waiting to hear back about what he is seeing that's making him think surgery is a possible option. I definitely want to know that before we even decide whether or not we will go for more testing.

I was so eager to start the new year back in December. Had I known it would be THE most difficult and trying year of my life, I would have kept my mouth shut!! And it's only May!

Neurosurgeon had to shave part of his head again. Poor kid, don't know if his hair will ever be even again!

Waiting for OT. He was in the best mood...until therapy started of course!

Nasty rash from antibiotics.

Because sometimes I gotta blame someone...

2011-03-29T15:24:00.003-05:00

Other than myself, of course. At least every once in a while. I admit, I have been distracted this past week. Very. For reasons I won't get into. But, because I think I deserve a little slack occasionally, my blame game goes something like this: Thank you, OT lady. Thank you for letting Austin mouthe every toy you handed him, despite my disapproval. It wasn't so much lead paint and choking hazards I was concerned about, although those are certainly valid reasons for concern. I know I'm protective and sometimes neurotic about Austin and germs and kids DO need their little immune systems to build up a tolerance. BUT, can you blame me for wanting to avoid any more complications and unnecessary illnesses when we're barely treading water here as it is? The last two times Austin's been he's gotten sick. He's NEVER sick. And when he is, we typically have to let it run its course and treat only with Tylenol and natural remedies. No antihistamines for this kiddo. Nope, he has a low tolerance for seizures, which make these a no-no. Tylenol, Lil' Noses, and Vicks Baby Rub are our only arsenal against the nasty colds. Which, can be quite an ordeal when your child still hasn't mastered the skill of blowing his nose. Every surface he touches becomes covered in drool because he doesn't want to swallow and snot because he smears it everywhere. And don't think I'm ranting because he happens to have his second cold in just a month. I wouldn't freak over that. Austin tends to have eczema flare ups during the slightest illness. A cold included. He's been scratching, scratching, and SCRATCHING. You should see the kid's back. Can anyone tell where this is going? Let's see, partially healed incision + scratching = INFECTION. Not fun. At all. This boy is never out of my sight, therefore you'd think nothing like that could escape my attention. Regardless whether I should have seen the beginnings of a problem. So, I've beat myself down enough over the last two months (or three years), I'm choosing to pass it off this time.

It's here

2011-03-17T07:30:00.005-05:00

I can't honestly say it's been worth every penny...just yet. We've had a few issues -which I'll go into more detail later on, and it's quality has left something to be desired. But, it's serving it's purpose nonetheless.

After our little insurance mishap, I put all the other, more expensive beds on hold. We're also in the application process for our state's disability medicaid that also assists with medical equipment and so forth, so I thought it best to wait until we could possibly get help with funding. The least expensive one of the three I chose was still going to cost about two grand, so 150 bucks didn't seem so bad as a temporary relief. I figured if it didn't hold up well, we wouldn't be out thousands.

I'd like to say it seems worth $150, but I'm not so sure. The construction is quite flimsy and the only thing that sets it apart (in my opinion) from a cheap camping tent are the dimensions which accommodate a twin size mattress -sort of.

We already had a large twin size mattress from the guest bedroom. The thickness of it definitely cuts down on overall height on the inside and head room for Austin. He can sit up in it without straining his neck, but just barely. It definitely won't be that way long though as he's always growing.

Now, for the major flaw. Even with a large twin size mattress, there are spaces on each side between it and the sides of the tent. When I set it up, I felt the gaps and crammed pillows to fill them in on one side. It seemed safe with no gaps (or so I thought). That night went well. I got sweet photos and was so excited to share the news. My first Austin free night of sleep! Okay, he was still in our bedroom, but still. Out of the bed at least. The next night, however, didn't go so smoothly. I miraculously woke up about 2:30 am. I could tell that he was awake. He wasn't super loud, but I knew he was awake. I sat up and leaned forward to see him. When I couldn't, I walked over to the side and peered through the screen. Still didn't see him. I unzipped it to find him completely wedged between the mattress and sides. His little body was sideways facing the mattress but his head was turned looking up. I can't even tell you the terror that went through me when I saw him like that. He had no leverage to get himself out since his arm was in a bind underneath him. Needless to say, I fished him out and spent the rest of the night in there with him. Apparently, even though there were no obvious or concerning gaps, the fabric stretched enough for him to slip down. I think I found a temporary solution by double cramming every pillow we own into the spaces. I don't even think his paci can slide down there, much less an extremity or his whole body.

My initial plan was to give it week's trial in our bedroom since I wasn't comfortable with him sleeping alone in it yet and then move it to his bedroom (providing I could adjust the video monitor where I could see him). After the other night, I don't think that's happening anytime soon though...

So...IF anyone is considering this bed enclosure...STUFF STUFF CRAM CRAM...and then CRAM some more into those sides.

He sure is adorable in it though, I have to say. :)

This set up is a temporary arrangement. It really should be strapped to a sturdy bed frame or at the very least pushed into a corner for added stability...especially if you are using an air mattress or another light weight mattress.

Another joyful day at Texas Children's

2011-03-06T16:51:00.006-06:00

We just can't seem to stay away from this place. Since our nearly one week visit for Austin's surgery back in January, we've been back four times. One follow up two weeks after surgery, one in February, and most recently, our Tuesday follow up and yesterday's ER visit.

Yep, our little mystery boy's newest...

The strangest facial swelling that apparently had all six doctors involved (and one neurosurgeon) baffled.

I could just sum it up by stating it started as a bulge in the forehead and ended up as a swollen eye over the course of three days. But, to keep from sounding like the most neglectful mother on Earth, I feel the need to explain our reasons for hesitating so long to get him seen. So, you may skip over the next two paragraphs if you don't want the mommy guilt detailed play by play.

After our most recent post op follow up on Tuesday with the neurosurgeon (that's another blog post), Austin's head started subtly and gradually morphing into the oddest series of swelling. It started Wednesday. Certainly not significant enough for me to panic. So subtle, in fact, that Chad and I repeatedly wondered if we were crazy. Or if it may have been the way his hair was laying. We both noticed within an hour on separate occasions. I noticed while giving him a bath. It's dim lighting in our bathroom so I assumed it was the shadows on his head. Then about an hour later, I saw Chad holding him, looking at him strangely trying to get him to hold his head still. I asked him what was wrong and he asked me if his head looked strange. I immediately asked, "kind of lopsided?" We looked in one light, then another, and then a different position and then another. Something was different, but we couldn't put our finger on it at first. I took several photos, but the changes were so vague. He seemed like his normal self, so we just assumed we were imagining it.

Thursday morning, it seemed similar to the night before only the definition of the bulging was less obvious on his forehead. The contour on the side of the forehead was the same though. Once again, I took some photos periodically throughout the day wondering if I was crazy. One thing I need to point out is that it did not look swollen. More like oddly shaped. It was not soft as if it were swollen with fluid. It was on the right side (opposite side where they operated). His left side had previously appeared misshaped for a while after surgery so a lot of our suspicions were that the right side may have seemed larger because the left side was flatter. And with the scar being just to left of the center it already has a slightly asymmetrical appearance. That's how much we analyzed it...every little detail. Anyway, it wasn't until Friday that I knew it actually had been shaped differently. The defined contour on the side was gone. To me, it looked a bit puffy, but there I went wondering again if that was actually normal now that the bulging had subsided. More photos to compare throughout the day. I knew Wednesday and Thursday were different, but was it back to normal now? When Chad got home from work, he agreed it seemed a little swollen, but we still weren't completely sure what to make of it. We decided to watch it overnight and if it was any worse the next morning, we would definitely take him in.

The first thing I asked when we both looked at him Saturday morning was, Are we going to Beaumont or Houston? Not much more debate needed. I called TCH and had a neurosurgeon paged. He said he'd be happy to look him over, but that the symptoms I was describing didn't sound like an emergency or anything related to the surgery. He did insist, though, that whether we opted for a local hospital or TCH, he thought it was necessary to have him evaluated over the weekend.

Seven hours we were in the ER. We saw seven different doctors. He fasted for hours waiting on CT scan. Over the course of the day, the swelling mysteriously faded, leaving only slight puffiness and a pink eyelid. The CT was cancelled and antibiotics were given. A script for more antibiotics was written, although they told us not to fill it unless the swelling returned. Two different diagnoses were mentioned, but even they admitted they were merely guessing. The swelling was the only common symptom. So, seven hours, seven doctors, one dosage of antibiotics and zero explanations. Oh, by the way, did I ever mention we are insurance-less until April (yet another blog post)? Coverage just happened to expire on Tuesday. Go figure, right?

Wednesday night. If you look very closely, you may can see the difference in the right & left side. *

Thursday morning. Still a slight protrusion.

Friday morning. The more clear definition of bulging is gone, but the right side is a bit swollen.

Saturday morning. I don't think a description is necessary.

* Even after expanding this photo, it's still difficult to see unless you know what you're looking for. The camera doesn't show it well (and it wasn't very obvious to begin with). It's right along the hairline and along the side.

Time for a change

2011-02-17T14:29:00.007-06:00

Past time, actually.

Oh, the decisions...

I worried about this last year. Austin is getting BIG. And he's definitely a mover. I knew it wouldn't be long before a crib was no longer an option. It made me nuts anyway. The padding, padding, and more padding to protect his little head from nasty drops. Even with all the extra attention I've put into that thing, I still worried. I bought a video monitor a long time ago so I could when he was having seizures and/or getting up acting wild. That helped A LOT. It helped me see what was going on so I'd know whether or not I needed to intervene or leave him be. Unfortunately, there were still incidents. Despite all the padding, he's still gotten bloody lips a couple times from smacking his head on the rail.

Then came surgery talk. I held off on any special equipment in the hopes that seizures wouldn't be an issue anymore. Surgery came and went. We arrived home still with seizures, but also with a sensitive incision and weakness to boot. That crib was completely out of the question. Chad was generous enough to give up his spot in the bed for Austin and take the couch temporarily.

And just when we thought we were approaching the end of our special sleeping arrangements, I found out his crib had been recalled and the exact model was associated in an infant's death. Assuming Austin is twice the size of a 12 month old that collapsed the metal bars under the mattress, I KNEW he wasn't getting back into that thing again. So, instead of taking it down, returning it, purchasing another crib, and padding it so he could outgrow it in a few months, I thought it was time to start exploring other options. It's only a matter of time before Chad's back can't take the couch anymore. It's not exactly ideal for me either, though. I bound to the bed once Austin's in there.

He certainly cannot sleep in a typical toddler bed. He has no safety awareness and, of course, has the dangerous seizures. It must have an enclosure. Something soft enough to not cause injury in the event of a drop seizure, but durable enough to withstand his mighty 37 lbs of weight -and activity. He definitely likes to get up and move around in the bed.

This is what I've found so far (with the help of my mom and Chad):

This is the Pedicraft Homecare Canopy Bed. It will definitely suit our needs, but comes with a hefty price tag and not to mention jumping through hoops with our insurance company, a vicious cycle of paperwork, evaluations, doctor's script, and lots of waiting I'm sure. Time is of the essence here, a guy that has to get up at 4:30 am for work can only be patient for so long. lol Also, not exactly aesthetically pleasing to the eye. ;)

Then there's this one, The Courtney Bed. Much more visually pleasing and less sterile looking. Not as pricey, but not really affordable either. Another long wait since I think they build them as you order them. We'd probably have to pay out of pocket for this one. LOTS of color options.

Then, The Safety Sleeper. Basically just an enclosure for a bed. Originally designed for kids with autism, but their website states parents of kids with seizures use them too. Much more affordable but definitely out of pocket, plus we'd have to buy a bed in addition. It's portable and can be used on an air mattress. Shipped directly, other color options, and padding available for the metal bars on the side. I like it. My main concern is the durability and weight resistance. I'm waiting on a response from the company now.

And thanks Danielle for showing me this option, The Nickel Bed Tent. I really like the price on this one. Much MUCH more budget friendly. I have a big decision to make! (I tried uploading a photo, but dang Blogger won't let me rearrange my photos!)

As promised

2011-02-16T13:09:00.005-06:00

Now for the GOOD of the surgery.

I've spent so much more time emphasizing what has gone wrong and the negatives since surgery, it's time to share the wonderful changes we've seen.

First his smiles...I cannot get enough. I keep taking photo after photo after photo! There are never enough smiley photos for me. Before surgery, I was lucky to get a real smile (not seizure associated) very seldom. VERY seldom. A vibrant smile where he's not only smiling with his mouth, but his eyes too.

And that LAUGH! Oh my goodness. I don't think many people even knew what an Austin laugh sounded like. They were extremely rare. I'd get giggles or chuckles from time to time and the very very occasional belly laugh. Always short-lived though. Now? I hear them ALL THE TIME! A silly face or sound is enough to get him in stitches. Absolutely amazing!

The walk. I didn't fully realize until just this weekend (exactly one month after surgery to be exact) just how much his walking/balance has improved. We were extra cautious with his free walking (putting the helmet over his incision and of course because of the seizures), so we were walking him by hand this whole time. Even then I knew there was improvement because it was so much easier. Instead of dragging his feet, hanging, and wobbling all over killing my back, he just walked. Like a feather. Also, before surgery, he'd run back and forth across his playroom with his head down making noises and balance was so bad. Tripping, stumbling, and just generally wobbly. It's like a night and day difference. He walks with his head up looking for things to explore. The video I shot doesn't do him justice. I think he's over stimulated in his playroom now (I need to get cleaning some of that stuff out), but it's the only place I felt comfortable letting him go without being right beside him (so I could hold the camera). Typically, he likes to stay out of there and likes to take his time walking and looking around. Like a different child, I swear. I think the improved balance has also made the difference in climbing on the couch too. He started doing that late Oct or early Nov. It was difficult for him though and he actually quit doing it altogether before surgery. He doesn't have an overwhelming desire to get on the couch most times, but I can put something he wants up there and he climbs with ease up to get it.

Then there's the attention span. Devon, you can vouch for this. Unless he was mouthing a hand held toy, he would give something 10-30 seconds..tops. He had very little interest in anything anymore. He may try to work it briefly, but then he was up ready to move. He has puzzles that we couldn't get him to finish. Now, he can sit there and take every piece out. And that Leap Frog barn toy. I cannot count the time he's spent playing with that thing. I'm not kidding when I say he can sit there completely content playing with it for 10-15 minutes. MINUTES!!! Probably longer if I could handle it. It has removable magnets and a push button chicken that plays music. He first started just trying to take out the magnets. Then he'd rub it over and over (typical pre-surgery Austin move). Then, just like he always knew, he started pushing the chicken instead of rubbing it. Now he pushes it with one finger. I think we've been working on that for over TWO YEARS! He's done it before, but I don't think it was intentional. There's absolutely no doubt now. Trust me, he does it over and over. And over! And just to test out the consistency, I've introduced other toys with push buttons. He's not quite as interested in that many other ones, but his new skill is consistent. And the barn toy has found a rival...the steering wheel (although not quite as pleasant to listen to -lol).

Let's not forget the increased vocalization. Seems like every week he takes on a new persona. One week he was affectionately called Goat Boy for his crazy goat sounds. He's been the emphysema patient (he'd cough to get our attention and to tell us "no"). He was the gasper last week -thank goodness that one's played out! It sounded like he was gasping for air and he'd do it over and over. I even took him to his pedi. You should have seen some of the looks I'd get when we went out. Imagine a kid laughing really hard and trying to catch his breath with a loud gasp (only subract the laughing). He wasn't used to laughing so much, it was like a new sound. A new sound that he wanted to experiment again and again and again. lol Laugh or no laugh, the sound just stuck. He was my hummingbird -humming all day it seemed at times. And here lately, he's the snob. His "emphysema" has been refined into an arrogant sounding "A-heeem" or "A-hmmm" or "A-huuuum" (with just the right amount of snobby undertone). It's not just the new experimentation of noises but the increased vocalization to express himself as well. He cries when he doesn't get his way (and he definitely knows what he wants and doesn't want by the way). If I'm walking him by hand and steer him in a direction other than what he wants, crying. If I put away his barn toy, crying. If I steer him away from his barn toy, crying. If I offer him a sippy and he doesn't want it, crying. If I give him peas on his tray without grilled cheese, crying. As terrible as it sounds to be applauding crying...it's not. I'm just happy to get his opinion and I can deal with the fits. :)

Overall, he is also much calmer. I have yet to see one of his crazy bursts of energy. I always suspected that behavior was associated with seizures. I can't even describe in detail what that involved. He was completely unaware of anything around him, he'd get worked up in this state and dance around in circles, stomping his feet and basically just going nuts. If he was sitting he'd kick like mad and you could just tell he wasn't in control. He does have his moments now, where he zones and exhibits seizure like behavior, but I have not seen one of those fits that I described since surgery. And this may seem small, but it's one of the first things I noticed after we got home and settled. He doesn't continuously kick his feet in the high chair anymore. He was always either kicking me or kicking his leg all the way up to the tray. Up and down from the footrest to the tray through the whole meal. It wasn't unusual for me to have bruises all over my thighs from this. Hasn't done that once. He just sits nicely with his feet properly positioned on the footrest. I wish he was still as calm as he was the first week when we got home. He would sit and watch TV, let me hold him as long as I wanted, cuddle up to me in bed and rest his head on my shoulder. He's much busier now, in part probably due to his energy level, but partly due to the seizure activity as well. Regardless, it is still not the level of restlessness he had before surgery.

Trust me, there is more, but this turned out much longer than I had planned. I've been meaning to do this for weeks now, and after the series of depressing posts, I thought it was time to let everyone know it's not all tears here. Sure, we're disappointed he's still having so many seizures, but I'm still oh so grateful to see so many improvements elsewhere.

Austin Feb '11 at OneTrueMedia.com

2011-02-16T12:41:00.005-06:00

My balance is 90% improved, I walk with my head up now, I can climb on the couch SO much easier, and I'm pushing buttons on purpose! With ONE finger!!! Oh, yeah and I LAUGH so much!!!

If only Ms. Brenda could see me now!

Make an on-line slideshow at www.OneTrueMedia.com

Information Overload

2011-02-14T11:54:00.003-06:00

We had that all important appointment with our epilepsy specialist this past Friday. Unfortunately, I didn't get the news I wanted to hear.

We talked past, present, and future. I did get the information I was seeking, just not what I was wanting.

The first burning question was WHY WHY WHY things aren't playing out the way they had originally thought immediately after surgery.

The answer?

Let me start by saying that we are dealing with lesional epilepsy. There was a clear lesion on Austin's last three MRI scans. In cases of surgical intervention with lesional epilepsy, the most common predictor of a successful or favorable outcome is the ability to remove all affected areas depicted on imaging (or MRI). Failure to resect the entire area of abnormal tissue shown is the most common reason for the surgery to fail or not produce a favorable outcome.

Austin had an incomplete frontal lobectomy -meaning the entire lesion as seen on the MRI was not removed. They could not safely remove the entire area without causing harm (right-sided paralysis). At the back of the frontal lobe lies the motor strip (this is where the motor function controlling his right side resides). Removing that removes his ability to move his right side. Even though that area was clearly spiking (favorable for seizure production) during electrode placement in surgery, they felt it better to leave it alone. Austin is quite delayed in every area. However, his mobility is one of his stronger areas. Even with a clearly defined lesion (abnormal area) on his MRI, a deficit such as paralysis would be devastating to a child with so many other "problems". They wanted to leave him with this function and see if removing the other area would be sufficient. They also did not want to take the chance that there could be more extensive abnormalities causing seizures that MRI was not showing, and removing that would mean causing paralysis and still not stopping seizures. I did not even consider this scenario, and it was not explained to me until I asked him point blank, Why? What is more devastating...a motor deficit involving one side, or daily seizures affecting his development? He definitely answered my question. More devastating would be paralysis on one side AND seizures.

They also felt that the areas that were removed were so significant that they anticipated a huge improvement. They felt it was enough to make a huge impact, and in the case that it didn't, we could always go back and take another look. The areas removed could have been enough to suppress any other abnormal areas from producing seizures -or it could have the opposite effect...the removal could make any other areas take over and produce seizures. This is what he feels happened.

We talked about other scenarios as well. Austin has confirmed Focal Cortical Dysplasia Type II (or FCD Type II). This type tends to be more extensive and widespread. It is the leading cause for intractable epilepsy. It could be that the only remaining area is the motor strip and removing that (causing paralysis on his right side) would stop the seizures. Or, it could be multilobar (involving other lobes of his left side) in which a total hemispherectomy (complete removal of the left side of his brain) would work. However, there is also the possibility that it is in multiple areas ALL over his brain -right hemisphere as well. That is the worse case scenario because that would mean surgery would never be an option.

Not that we are talking surgery again. I did want to know ALL our future options though. It's not completely out of the question later on, but there would have to be more convincing evidence ruling out anything that suggests his dysplasia is bilateral (both side of the brain). Right now, though, all we have is the MRI which showed the lesion to be contained to the frontal lobe. It may or may not be in other areas and is just not showing up (like his previous "normal" MRIs). We just can't take the chance that it is far more extensive in which case another surgery could be unsuccessful. My heart could not take that again.

In my heart, I do not feel it is bilateral. Although my eyes are clearly not enough to validate this, I truly believe it is only the left side. I could be wrong. What do I know? But, if seizure appearance really does play an important role in determining which side is affected, it is clearly only his left. I don't think I have ever seen a left sided seizure. Sure, he has generalized seizures, but almost all the seizures I see definitely have more of a right sided appearance. I've pointed it out numerous times. And when I had no clue there was left frontal lobe dysplasia, I knew something was going on with the left side. Even when there was absolutely no other evidence to suggest this. They are more right sided now than ever. And he has a strange new behavior that involves picking at his right thumb (always associated with either seizures or seizure behavior, aka the zoning) in addition to still rubbing his right hand before/during/after seizures and/or clusters. I feel just as confident as I did before, but I'm leaving it at that for now. It has only been one month since surgery and we are in no place to be considering it again. Our wounds are still too fresh to even really go there. Not to mention Austin is still healing and will need much more time before another surgery is even an option anyway.

We discussed our present options. We don't have any new meds to try. We didn't get a good start on the LGIT (low glycemic index treatment), thanks to the steroids wreaking havoc on everything. Which reminds me...the steroids, although showing some success (drops are down and there are extended periods with no seizures at all), cannot be a long term treatment. There are too many health risks and side effects associated with them. When treating seizures, they are only meant to be short term. Either they will stop the seizures or they won't. Improvement is not enough. The only thing worse than a med not helping is a med that helps that has to be withdrawn. That is where we are.

Since we have no more meds to trial, we start over. He asked me which ones I would like to give another try -ones that I thought might have helped. He said there is a possibility they will help now -due to the time that has passed and the areas left from surgery may be more responsive. The only ones that came to mind were zonisamide (Zonegran) and Depakene. We have a long history with the Zonegran and I really didn't want to go back there (we finally got him off after two years of trying last fall). He was on Depakene for about six months back in 2009. During that time he had no drops at all. I always blamed the vigabatrin for the drops since they started when he was first given it and stopped when he got off. During the vigabatrin wean, we added the Depakene. It wasn't until a month after stopping Depakene that the drops came back. Our lives were so much different before the drops came back. I really leaned more toward starting Depakene again first, but he settled on Zonegran. We started him back on a decent dosage. No wasting time on this trial because I was adamant that I didn't want to draw it out again. If there is not significant improvement within a couple weeks, we will go to Depakene. Hopefully, we will start the clonazepam wean sometime soon when we're not making other changes. I'm dreading that one, but there's absolutely no reason to have him on it. The only reason he is still on it is because it will be a very long and difficult wean and there have always been other changes taking place. I'm going to ask if we can maybe to a little at a time in between other changes. The key is to not make simultaneous changes. Which is why we decided against the LGIT for the moment. He said we should keep it in our back pocket for now and rethink it if these other two meds fail. There's also the ketogenic diet we can consider again since it did have an effect. No comment on that one for now.

We will go in April for another follow up and an MRI to check that his brain is healing properly. Then, we will have an EEG.

So, that's it. That's the plan for now.

Ping Pong Anyone?

2011-02-10T10:49:00.005-06:00

Never in the almost three years of dealing with daily seizures have I ever been so indecisive about our situation. Sure, it's been up and down since this all started, but it's never changed so rapidly over such a short period of time -multiple times at that.

Before his surgery, his changes were almost always gradual. He's never had consistently high or low amounts of seizures, but the inconsistencies have never been to this extreme. There is only one time that I can recall where seizures were so scarce that I could actually imagine them stopping altogether. One time in nearly three years. And he wasn't seizure free for even a day. Instead of having five or six clusters of 15-90 seizures, he would have random, single seizures scattered throughout the day totaling maybe 15-25. I think that lasted a couple weeks. It was immediately following the ACTH wean while he was on the lowest AED dose he's ever been on (50mg of zonisamide). Then, just like someone flipped a switch it was over. Clusters started back up and he was having (on average) 50 a day. I never realized at the time that I would eventually wish he was only having 50 seizures a day. That was a long time ago. Ages it seems now.

From that point on until now, we've seen them gradually evolve. Over the past two and half years, we've seen new ones appear and disappear and reappear. We've seen intensity and frequency increase and decrease. We've seen development progress and regress and progress again. We've seen his personality peek and decline. It's been a never ending cycle of changes. And the only thing that was ever consistent is that nothing was ever consistent. It's what we began to realize as our normal. We adapted.

As humans, one of our most basic survival mechanisms is our ability to adapt. Adapt I have -without even realizing it most of the time. Little by little. I slowly changed and adjusted my expectations from praying it would stop so we could resume our lives to praying it would stop so we could save our son's life. Three years worth of daily seizures, I know now that there's no turning back. I also know that our life is no longer on pause until we can stop the seizures. This is our life. The damage has been done and it's unlikely we will ever be able to repair the damage that has been caused by the thousands and thousands of seizures he's had in his life. It's been a very very slow realization, but it happened.

I adapted.

The difference, though, between what has transpired over the last few years and now, is the fact that nothing happened overnight. Other than that infamous day of diagnosis, we've had the luxury of gradually adjusting to and accepting the changes that have taken place. Not now. We've seen more change in three weeks than we saw in three years. And it changes EVERY SINGLE DAY. Just when I think it's better, it gets worse. And when I think it won't get better, it does.

I can't even describe his progress. I've never been so completely confused. Picture different types of seizures, intensity, frequency, clusters, no clusters, alertness, little alertness, interaction, little interaction, laughter, and screaming. Then jumble all those up into every combination imaginable. And change it everyday. That's what we're seeing.

I've said it many times before, I expected to see seizures after surgery. I expected mood swings and irritability. Our doctors even prepared me that I may see different types of seizures immediately following surgery. But these extreme changes occurring every single day, four weeks after surgery, I did not expect.

Yep, today is exactly four weeks since surgery. Four weeks ago today, I was sitting in the waiting room at TCH anxiously waiting for those phone calls from the OR. For six excruciating hours, I waited. I can still vividly remember almost everything about that day. Surrounded by friends and family, we were praying for our miracle. With every minute that ticked by, we got closer. I can still almost feel that hope coursing through my body like it did that day. Finally, I thought all day. Finally, Austin was getting his chance to overcome this. A real fighting chance.

And here we are. Still no closer to knowing anything than we were four weeks ago. Still praying for improvement. We do see it. Then, we don't. Then we do. I have to admit, there is still overall improvement, but it's not enough. Had I known where we'd be four weeks out before the surgery, it certainly wouldn't have been enough then either.

How in the world do I adapt to something that changes every single day? It's difficult not to get my hopes up when I see him go hours and hours without a seizure, something we never ever saw before surgery. On the flip side, it's difficult to keep my hopes up when the days seem no different than before surgery. We've never been at such a crossroads before, and it's never shifted so much from day to day.

I've never been so eager to go see our less than personable epi. We go tomorrow for our one month follow up. Maybe we'll get some insight into what's going on and where to go from here.

We don't have an EEG scheduled (why I don't know), but I'm in the process of collecting some of Austin's seizures and behaviors on video to take with me tomorrow. He's going to see what's going on one way or another!

By the way, I do appreciate all the advice, support and encouragement I've received over the past month. Whether cards, balloons, sending food, prayer chains, comments here, texts, phone calls and emails...I feel very blessed for our support system. I haven't been great at keeping up with many of you, but I am still very grateful and nothing has gone unnoticed.

Mommy vs Doctor

2011-02-07T08:42:00.004-06:00

That's how it feels sometimes. Like when we went behind his back to see Dr. Chugani in Detroit. We never discussed it with him. Not even once.

We've been seeing him for over two years now, and I have to admit, it's been a love-hate relationship. Lately, it's been less lovin' him, since we got home anyway. A panicked mother who has just let her son have brain surgery to control seizures that are nowhere near controlled may just need some comforting and reassurance...especially from the doctor that recommended it. Not from a nurse relaying messages that has no earthly idea what's going on. And that's why there's been less lovin' and more...well, hate is a strong word. Strong dislike is more like it. ;)

So, to the point. I quickly realized, after several failed attempts to get this guy on the phone, that we were going nowhere. And I was desperate. Desperate to get back that little boy with the sparkle in his eyes. The one we saw for a week and three days after surgery.

We racked our brains trying to pinpoint what happened. My mom kept mentioning the steroid we had to stop. I immediately blew it off because it was prescribed for swelling after the surgery. Finally, when I was at my lowest point, I decided to google it. To my surprise, there were actually a lot of indications that it could have been making a difference.

I finally managed to get our doctor's nurse practitioner on the phone and explained to her everything that has taken place. I couldn't stress more that I felt like something had happened. The only major change in anything (besides the Benadryl -which had long been taken out of consideration) was the discontinuation of the steroid. She agreed another trial of it was worth a shot. If nothing else, I would be at peace knowing we tried it.

Our doctor couldn't have disagreed more. The first words out of the NP's mouth when she called me back were that he was not happy with the proposed trial and that he felt it would have no effect at all. But, he agreed we could do a very short trial and gave dosage and weaning instructions for the next 20 days. Also, he felt so strongly that it was a waste of time that he wanted us to start the LGIT diet simultaneously.

Ugh, the thought of another diet makes me nuts. More on that later...

We started this dexamethasone trial with our doctor's instructions and permission but without his blessing. He must think I'm crazy. How could I not want to try it though? If that were the only change between a dream and a nightmare, wouldn't anyone want to try it? If for nothing else, to rule it out?

It's Monday. Day 5 of 20 of the trial. The last day for three daily doses. Tomorrow we go down to twice daily. The results we've seen have been confusing to say the least. Thursday (Day 1), he went over four hours with no seizures that afternoon. Then a rough night followed by a rough morning. Then, almost nothing for 20 hours. A medium intensity head drop and a few light jerks. We haven't seen such long breaks like that since that first week after surgery. Overall, frequency and intensity seem to be much better.

Almost ALL of the ones he does have are SO blatantly right sided it makes me cringe. Eyes to the right, head to the right, right arm flying up or out, right leg jerks. From everything I've read, obvious right or left sided seizures typically indicate issues on the opposite side of the brain. Austin had his LEFT frontal lobe resected. He was having right sided seizures before surgery. He is STILL having right sided seizures. It makes me so angry that they left that tissue there to keep producing seizures.

In any event, we are trying and trying to duplicate that what appeared to be success -or immense improvement. The steroid trial seems to be making a difference. Whether it's overall effects will be enough, I can't say. It doesn't seem to be consistently getting better with every day, it's more like complete unpredictability. He does amazing for maybe 12 hours, then we start all over. But, at least there are those amazing moments sprinkled in there rather than it getting progressively worse like it was before we started it. I have no clue what to expect from here on out.

And, of course, like with any steroid treatment, there are major side effects. The most obvious being IRRITABILITY!! The 'roid rage has begun. For the first time since his surgery, I'm flying solo here with him. It has taken me HOURS to write this post. Constant interruptions...this kid can go from laughing to SCREAMING in seconds. Everything seems to set him off -music, singing, loud noises, and sometimes nothing at all. The photos below are a typical meal lately.

Happy as can be one minute...

'Roid rage the next...

I think I started singing him a song in this particular fit he had. Tears, lip puckering, snotty meltdowns...and nothing seems to help. I remember reading that Vitamin B6 is a mood stabilizer. I think he took it when he was on Keppra (another AED that causes extreme irritability). Wonder if it helps on steroids...

And it continues...

2011-01-29T12:53:00.008-06:00

We've had a few scares since my last post -which is why I never got to the good stuff I promised. I will get to it soon. There are so many. But, first...

Seizures are no better. Actually they are worse. So instead of just being devastated that he is not having better improvement like last week, I've been beside myself with worry on top of that. He started having not only more of his typical pre-surgery seizures, but new and different ones as well. One that prompted the 8:30pm call to the on-call neuro at the hospital. He had what appeared to be a typical drop seizure only this time he remained dazed and wouldn't breathe for what seemed like an eternity. In reality though, it was only about thirty seconds. We've never had anything quite like this so I've never even been given a prescription for a rescue med like Diastat. Not that we would have needed it in this case, but I was not comfortable knowing how far out we live and not having anything like that on hand...just in case. I didn't trust our past experiences. I don't trust anything anymore. Nothing is going the way we had hoped -or even told by dozens of doctors and surgeons we've seen and spoken to over the past two weeks. Needless to say, I stayed up til the early morning hours just watching him sleep.

Then the next morning (yesterday), another new one. Uncontrollable lip quivering and up and down jaw movement. What was so strange about this one is that it appeared very mild, yet he was so out of it once it was over...like he'd just had an exhausting tonic seizure.

Of course I called our epi. And, of course he didn't return the call himself (even after I specifically asked that I speak to him or his nurse practitioner -whom I'm very comfortable with- directly). The word back was...The increase in seizures could be due to a delayed response to the Benedryl (I can be a gullible person, but I don't buy that). Do not give any more Benedryl (he had 3 doses total and it had been 6 days since the last one). Watch him over the weekend and call on Monday to report his condition. If there's no improvement, the LGIT (low glycemic index treatment -it's like a liberal form of the ketogenic diet) will likely be initiated. Instructions can be given over the phone and no hospital admission is required for this one.

He seemed to do slightly better yesterday than the day before. Until this morning. Cluster after cluster, drop after drop. Two hours of being awake and he'd seized nearly sixty times. I called Chad to tell him an ER trip was in our near future. I feared post op complications. How the heck could he be worsening so much?? I imagined swelling, bleeding, you name it. The on-call neurosurgeon rejected all of those suspicions. He said it was too far out since the surgery to be seeing any of that based on an increase in seizures alone. He didn't have any other symptoms that would make him suspect any complications related directly to the surgery. He didn't recommend that we come in. He didn't discourage it though and said they would certainly check him out if we did come, but he didn't think we needed to. He was actually the one that released us and he remembered us. He was surprised that Austin's improvement had declined (he's not the only one) because he remembered how well he was doing.

Really. How can 80-90% initial seizure reduction go down so drastically so quickly? Really. I'm completely lost.

Like I mentioned before, I keep replaying past conversations I've had with ALL the doctors and surgeons we've talked to. Nothing. Nothing prepared us for this. Even the speculations that this was unlikely to stop all the seizures. It certainly didn't prepare me any when the surgeon came out and the first thing out of his mouth regarding the surgery was they were confident they got the majority of the seizures. And it definitely wasn't when our epi (Mr. Doom & Gloom himself) came in to check on us and said he was really really pleased with how it went. They all just knew we were in for great improvement.

Update: It's been several hours since I started this entry (duty called, Austin woke up from his nap), and I'm relieved to say there's been some improvement since this morning. I'm still holding my breath, praying, crossing my fingers and my toes, and hoping this continues. That's one of the hardest parts. No day is the same. Every single day brings us something different. Even morning vs evening. He could have a terrible morning and a wonderful afternoon (and vice versa).

First the not so good

2011-01-27T13:56:00.004-06:00

I guess I'll just dive right into it. No sense in stalling or beating around the bush.

This has been an awful week for Austin and seizures. Awful because he just had brain surgery to relieve him of some of this. Yes, we still see improvement in every area. But, dang it, this is NOT good enough considering what he's been through to help him. There. I said it.

I've been holding on to that for days. Scared to say anything to anyone besides my mom. Because she is here with me every minute of everyday, so she knows and I can't hide it from her.

I knew not to expect a miracle. I prayed for one, of course. I tried to expect it (because you need to expect your prayers to be answered -that's faith, or so I'm told), but there was always that little piece of me that said I needed to be realistic. So I didn't expect 100% seizure freedom. I was crushed to see post-op seizures. Crushed. Regardless of what the doctors said (...it's not uncommon, don't freak, blah, blah, blah, etc.), I did hope we wouldn't see anymore though. He'd have a rough cluster and my heart would sink. But, then, maybe nothing for hours. HOURS. We never EVER got 3+ hours with no seizures. Much less 8-9. Never. So, after several days of this, I thought I could handle it. Especially since they were still considered post-op seizures. The ones they said they generally write off anyway. And when he did have a cluster, it was usually no more than 7 or 8.

Then came Saturday. The morning after we discovered a strange rash (of course he gets weird stuff on Friday nights...always). By the way, our neurosurgeon was paged and he told us to discontinue Austin's Decadron & Zantac (steroids he was taking for swelling and the Zantac to protect his tummy from the steroids). We were in the weaning process for the steroid, but because it was the only drug Austin had never been on before, he wanted to stop it in case it was an allergic reaction. I was also instructed to give him Benedryl every 6-8 hours. I vaguely remembered a nurse telling me a couple years ago that antihistamines tend to lower seizure thresholds -which is what Benedryl is. Now, back to Saturday. Austin had a mean cluster of nearly 30 seizures. I blamed the Benedryl, of course. Then nothing for about 9 hours. We had a wonderful day...nearly all day. A vibrant, smiling, calm, laughing, interactive, responsive, non-seizing Austin for NINE WHOLE HOURS. Unheard of before surgery. The rash wasn't going away, but he didn't seem to be bothered (other than a little scratching here and there) by it.

Then Sunday. The rash was looking much better so I decided no more Benedryl. Seizures weren't great, but he still had hours between some of them. Happy, alert, calm, interactive once again. Until Sunday night. He started having these strange bursts of laughter for no apparent reason. I've heard of laughing seizures, but I've never seen one. I'm not saying that what he was having, but it was very weird. My gut told me something wasn't quite right. I'd been paranoid since Day 1 about everything, but I knew this was not good. He also developed a new behavior since surgery. He picks at his right thumb. This increased quite a bit. He seemed to zone out a lot more -like pre-surgery Austin.

Oh, and before I forget, he started having seizures in his sleep last Thursday or Friday night as well. I'd never seen him have them like that before. He may only have eight seizures all day. But as soon as he started drifting off to sleep, he'd have a couple. Then he'd wake up. Drift off again. Have a couple more. Then he'd just sleep right through them. He'd have more in an hour of sleeping than he'd had all day. Before surgery, he'd typically wake up, THEN start having seizures. I can't recall ever seeing any while he slept. This worried me. A lot.

So, by Monday, I started to unravel. He had stayed up 14-16 hours at a time over the weekend. WOULD NOT take a nap. Then he only slept 8-9 hours at night. So, after a nasty morning cluster of about 10 seizures, he finally seemed to want to take a nap. Seizures kept waking him up. Sleep. Seizure. Wake up crying. Sleep. Seizure. Wake up. About four or five times.

Drops started coming more frequent. He was no longer getting hours in between anymore. An hour -two at the most. I was flashing back to our life before surgery. Sure, seizures are still down overall. But, if they're attacking him every hour or so, his life may not be much different in the long run. He seemed to zone out more.

Tuesday. Even more seizures. And I swear, that new sparkle in his eyes seemed to start fading.

Wednesday. More than Tuesday.

Today. At the rate he's going, it will be more than yesterday.

That's the best summary of his seizures I can muster while I'm gently typing so as not to wake him while he naps just 10 ft away from me.

We have instructions to increase the dosage of his current seizure med and will have a follow up with the epilepsy specialist in a couple weeks. He still keeps saying seizures the first month are common. I keep replaying our neurosurgeon saying, I really think we got the majority. And our usually very depressing epi flashing a big smile and telling me how optimistic he is. Hugging me. Encouraging me. Very uncharacteristic of him. I keep revisiting that in my mind for strength. Because what Austin's doing right now is taking all the strength I have -and then some. They said this was expected. But here we are, two weeks to the day. I expected gradual improvement over this month. Not the opposite. So, it's scaring the shit out of me. That it may actually get worse than this.

I can't give you such a heavy load of depressing junk and not recognize the positives though. There are many. Whether (at this point) it's worth him having part of his brain removed...I don't know. Maybe time will tell. It's too early to start making assumptions (about that AND seizures). I promise to share these positives. Hopefully tomorrow.

Because I'm too lazy to write...

2011-01-22T14:08:00.004-06:00

Austin has definitely been keeping us on our toes...hence, my brief update. To sum this week up, he's been pretty well over all. Seizures are still much lower than the norm (although they seem to fluctuate still), he's had huge bursts of the happys, sometimes followed by major crankys (which accounts for my being so lazy). Yesterday was one of those days. He was pissed all day, and like trying to learn your newborn, we were trying every trick in the book to soothe & please him. Today...giggles...smiles...calm.

Here's a catch up on photos.

The first time I got to hold my baby boy after surgery

Home sweet home

First time up and about. Immediate smiles :)

The new 'do. Just like Daddy!

Wanna see my food?! ;)

Home at last

2011-01-19T16:15:00.004-06:00

Just a very quick update so I'm not leaving everyone hanging (those of you not following on facebook)...

We are home!

Austin is VERY hard to read right now. Like my mom said, I almost have to relearn all his cues and expressions...movements, noises, even seizures and so forth. What I used to know were seizures is out the window almost. I do know some are definitely seizures, but others are questionable. All are different overall. Some are far more subtle and others are...just different.

I've almost been scared to update because every time I do, something changes. We haven't had consistent highs or lows. It's been all over the board so far. I thought it may finally be safe to report about his day yesterday and our trip home...I was planning on doing that first thing this morning. Then, at 6 am the seizures started back up. He'd gone 36 hours without a "big" seizure or cluster. I can't even describe how that felt. I was still cautious because we'd seen him do that (not quite 36 hours) before and it immediately went downhill about 5 minutes after I updated all my family and friends. And I was right to hold off. He's had about 50 definite seizures today.

I know, I know, I know it's still early. Our doctors just keep stressing that. But, can you imagine how devastating it is to witness such a wonderful day with no major seizures (maybe 10 light twitches), to see him smile again, hear him belt out giggles, and just feel like what I just put him through may just be worth it? Then, to wake up to a day that seemed no different than any other before surgery -only today he's hurting, weak, and sporting a massive incision on his head as a reminder of what I just put him through...And for what? I'm not saying it won't improve. That's just how it felt this morning. That nothing had changed except a missing frontal lobe.

It has gradually improved as the day's gone by. There have been hours between seizures some of the time -still an improvement. He was so happy to get up and walk around (he's still weak so we're holding both hands). Hopefully our PT will get going next week.

So, we're not just dealing with recovery. We're dealing with seizures as well. A rollercoaster so to speak. I was about as realistic as I thought I could be going into this knowing we'd still possibly be dealing with seizures. It's never enough though. There's absolutely no way to not be devastated. There's just not.

We have to just wait it out. Concentrate on getting him well is priority. He's a very strong and determined kiddo. He's been through hell and back this past week, but he's doing amazingly well regaining his strength. His interaction is wonderful and I've never seen him laugh so much consistently where seizures weren't involved.

I will hopefully try to update again tomorrow and maybe get some new photos up. I still have a lot to say. We've all just been so tired and there's always one eye on Austin -even when he sleeps (he keeps waking up wanting to scratch his incision, so we've been trying to keep that under control).

Post-Op Photos (Days 2-3)

2011-01-16T20:37:00.007-06:00

Consider yourself warned! The photos are actually not bad at all though. They will probably tug at your heart more than your stomach. But, it's a warning nonetheless...just in case you're eating. Or not prepared. I don't think it's bad at all really. Much cleaner than I expected, honestly.

Post-op

Day 2

The incision is much larger than I expected. They also shaved much more than I expected. A comb-over won't even work here. Neither will a mohawk. We're wishing we would have had them shave his whole head.

Finally holding (and wanting) his bottle.

Day 3

The swelling has increased, but it's actually not as bad as I thought it would be. He's a little puffier right now (no photo), but still not what I expected.

I just had to snap this one. He's been watching the TV for a couple hours here. He's never paid any attention to the TV for more than a couple minutes before. I'm not saying he's taken a liking to TV overnight, but it was something I've never seen and had to capture it to remember.

Post-op -Day 3

2011-01-16T20:15:00.006-06:00

I have to start by saying today started as one of the worst days of my life. Mom (aka Nana) took the night shift last night so Chad and I could go get rest at the hotel. I came back this morning fully rested and refreshed...ready to take on anything. When I got here and found out he'd had not one but two nasty clusters plus 4-5 of his "holding" seizures, I thought someone cut out my heart. He'd been showing more pain symptoms too. I just kept thinking to myself...all of this he's going through...for nothing. For nothing. I wanted to crawl in a ball and sob on the floor like a baby.

We also had a lengthy chat with the on call neurologist -the same one from yesterday. She told us that although we can't tell what the outcome will be for some time, his chances of seizure freedom are obviously very low considering all the post op seizures he's been having. That doesn't necessarily mean there's not room for more improvement to come...it's just highly unlikely at this point to expect zero seizures in the future from this surgery. And even though I so desperately wanted that, I was warned that chances were slim earlier on. She also mentioned that it takes a good 4-6 months to know the true effect of the surgery. We will have a very good idea earlier, but seizures have the possibility to increase or decrease over this time frame. I was aware of that too...just from following our IS friends through their battles and surgeries. Even with that being said, she also told us that seizures this early on post-operative, are generally written off.

So, we started this day with many burdens. Many fears weighing on our minds. I like to be the hopeful type, but I don't like getting set up for disappointment either. I thought it more realistic to not expect seizure freedom, but to secretly hope for it. To not freak when I saw seizures and not to celebrate when I didn't (thanks to our neurosurgeon's advice). To be water (thanks to Ken's advice).

I'm not saying it worked entirely, but I tried. I'm still trying.

Austin showed me today why this is so important. Each day has been so very different. There have been ups and downs every day and all in different areas. One day there are very few seizures, but no other notable improvements. The next, there are worrisome seizures, but huge strides in alertness and gained strength. Today started absolutely terrible. Discouraging and depressing. But now? Tonight at 10:30? Austin has been calmly resting...awake. Watching TV, eating real food, drinking bottle after bottle, functioning toys, making wonderful eye contact, and having very few seizures. I've seen less than 10 all day since the awful morning cluster my mom reported. And they weren't the typical spasms or tonics I usually see. Small twitches, but seizures nonetheless. But I haven't seem him have this few seizures while being awake for so long in...almost 3 years.

I'm not making assumptions. Believe me, I learned NOT to do that. And I'm not celebrating either. But, I am taking it in for what it is. My son has been awake for hours today and is not seizing like crazy. Even if it's only for today, I got to see him get some relief for a change.

And that has somehow made this excruciating experience of seeing him in this state bearable. It still completely sucks and breaks my heart to see him not wanting to move (he's ALWAYS been a mover -ALWAYS). But, it makes me think I can still take on tomorrow.

And the next day. And the day after that. I learned today that each day can be completely different.

Goodbye ICU, Hello 10th floor!

2011-01-15T12:07:00.004-06:00

Just before they took him back for surgery

In ICU about 6 hrs post surgery

It's so good to finally be in a room now. We got up here around 10:30 last night -just when I thought all hope was lost and assumed we'd be down in ICU til morning. What a relief!

Austin has had quite a turnaround as well. He finally woke enough to actually suck a bottle and his paci. He also had a small amount of banana for breakfast too. I was really worried about it coming back up, but he was able to keep it down until it was time for his oral steroids. I can't imagine what that must taste like because he's vomited both times after getting it. As soon as he tastes it, he vomits.

So, I started the first two paragraphs earlier this morning. One of the neurologists came in while I working on this post, and four hours later, I'm finally getting back to it. There's been a few changes since then.

We are pleased to see him alert enough to take a bottle and able to eat...but...I just wish he could have kept it all down. He kept the banana down and the other fluids he was getting, but not his lunch. He'd only had a few bites and about 5 oz of water, but it came right back up. They gave him some Zofran and he was able to take his meds after that mixed in a little grape juice. So far so good.

He's also been having a few more twitches and jerks since then, and I'm afraid to say they are most likely seizures. The attending neuro actually witnessed one and she agreed.

They also came in and took the dressings off his head. The incision is much larger than I thought, but they are pleased with how it's looking overall. There is a little swelling, but it's not overwhelming at the moment. They warned me that today and tomorrow will probably be the worst of it. It seems to gradually getting puffier since this morning. When neurosurgery came in this morning, they said if all goes well, we may be getting discharged either tomorrow or Monday.

That was before the vomiting and discussion with neurology. They want to do an EEG Monday to get an idea of what's going on. It's a little late for anesthesia to still be having many effects. They are still not dramatic or prolonged seizures, mind you. We've seen zero of those. But, we still need to know what's happening. Our attending was not surprised and said she wouldn't be surprised if this was still going on two months from now (even though she said what's happening now doesn't necessarily reflect what will happen a month or two from now). She was present during surgery and did the readings from the electrode placement. There was still some spiking going on in areas that could not be touched because it was the motor area. However, even with that being said, they are still confident that the majority of Austin's problems were located in the areas that were removed. Even if he is still having seizures, she said she still considers this surgery to be successful. They weren't expecting seizure freedom, but rather major improvement, and they are confident this will be achieved.

I would love to share my thoughts on the subject, but I'm just emotionally drained. I'm afraid if I veer too far from the facts, I'll lose it. I knew I was doing a little too well yesterday and the day before. Reality hadn't hit yet. Today was the day I guess. Maybe it's because he's awake more now and I don't see my Austin. Elaine, you were right. When he was sleeping 99.9% of the time and had the dressings on his head, it just didn't seem as real. Now, my nerves are on overload. Trying to figure out what certain looks and reactions mean..whimpers, groans, and whines...movements...the vomiting...and every single time he looks into my eyes, I want to cry. I feel so guilty and afraid of what he may be thinking, and wondering if he thinks I failed him. I'm Mommy. I'm supposed to mean protection, love, and security to him. But, I was the last person he saw before he went to sleep in a safe world. And the first person he saw when he opened his eyes when the world he knew collapsed. Is this normal? I so hope that once he starts recovering a little more and gets back to himself, the guilt won't be so overwhelming. He has no clue we're only trying to help him.

Okay, I can't go anymore on that...ugh.

There's still so much to say...I'll try to get it posted soon. And some photos. Here's a couple for now.

Houston, We have an update...finally!

2011-01-14T19:49:00.004-06:00

So very sorry for the delay in updates. I really meant to check in sooner. I never thought we'd still be in ICU at this point and completely drained beyond imaginable. Yes, a full 24+ hours after surgery was finished, we're still in ICU. Not because of Austin's condition but because of the lack of beds on the neurology floor. We were actually approved to move up there this morning, but we've been waiting for a bed to open up. We even waited to get into ICU from recovery.

Anyway, I know you just want me to hurry up and get on with how everything's going, right? I have soooo much I want to jam in here, but not a lot of time. Well, so far, so good. Austin doesn't seem to be in much pain. He's very very groggy. Still sleeping about 99% of the time. He does wake up, but he's really only in and out. We've gotten to hear a few raspberries, and he's been quite feisty lately...letting everyone know when he wants to be left alone. Swelling hasn't really started yet. His left side is a little puffy, but not super noticeable..it will likely set in tomorrow or the day after from what they say.

Here's what the neurosurgeon had to say (as best as I can remember -he got me a little worked up -more on that later).. It went really really well. Mapping went smoothly, electrode placement worked out nicely also. One of the first things he said was that he thinks we got most of the seizures. Remember what I said in an earlier post about the supplementary motor area causing temporary paralysis? Well, we lucked out. There was a chance that it would, and also a chance that it wouldn't. It most definitely did not! He's moving that side with no problems whatsoever! We dodged a setback there.. He also said that it's still left to be determined whether or not we are dealing with the "tip of the iceberg". Only time will tell. He implied that if seizures persist badly, we are still not at the end of the road. They did not do the corpus callosotomy, so he said that can be done later on if needed. Also, he said not to freak if we see seizures after surgery -even though he never gave me hopes that Austin would be seizure free from this surgery. But, he also added...don't celebrate if you don't see any either. It's just too soon to tell right now. A brain surgery can provoke a seizure in someone who's never had one in their life. There's just a lot going on in there right now.

So have we seen any? I can't say with complete confidence one way or another. I've always had a keen eye for those things, but I'm not so sure what's going on right now. It started in recovery after the surgery. Twitches and jerks. Quite a few of them. I kept my cool and didn't lose it even though my heart was crying. And this morning when he had four of what I thought were mild looking body jerks -not just jerks of the hand or leg like I was seeing last night. But....we've only seen about six of those today...along with the occasional jerk of the leg or arm (which is tapering off by the way). About 6 pm, our regular epilepsy doctor (who I haven't seen in forever and who was out of town yesterday but closely followed the surgery) stopped in to check up on us. He told me everything looked really good. He also filled me in on the jerks and twitches (which I'm surprised no one else did). He said it was most likely from the anaesthesia. Apparently that is very common after being under anesthesia for so long. Austin happened to have one of the body jerks that I just knew was a seizure. However, he felt fairly confident that was not a seizure. Of course, no one can be certain without an EEG, but it still made me feel soooo much better. So, if that is the case, and that was not a seizure after all, he hasn't had any that I have seen. No eye rolling. No arms way up seizures, no head swaying or tonics. No facial space outs. No prolonged body tensing.

We are encouraged..but still cautious of course. Austin's doctors didn't expect 100% seizure freedom. But, we are very optimistic that if he's not seizure free he will be much much better. Considering all his little body has been through...I'm very happy with how he's doing in that area. Normally, just waking up will bring on a hard set of seizures. Or a fever (which he's had since last night). Not to mention the surgery itself. So, even if those were seizures we were seeing, it's about 95% better than it was two days ago. And under the circumstances where he is at such a high risk to have seizures...very encouraging.

I do have so much more to say, but I know his Nana needs a break. Chad went home with his parents to get his truck and will be coming back first thing in the morning. He needed some rest too. He took the night shift for me last night and was functioning on about 5 hours of sleep in the last 48. So it's just the two of us here with him until tomorrow. I have some photos to post, but hopefully I can get around to that later tonight or tomorrow sometime.

2011-01-13T17:12:00.002-06:00

This is Austins Nana. Austin is out of surgery and doing well. Holli is with Austin, of course and asked me to post a short update to let everyone know everything is fine. He is still in recovery but will be moved to ICU soon. Im sure Holli ill post the specifics as soon as she can.

Thanks everyone for all your prayers and support and encouragement!

Update: Surgery underway

2011-01-13T13:12:00.003-06:00

Surgery began around 9:45 am. Updates are coming every 1-2 hrs. The last I heard was about 11:50 am (central time) and all was fine then.

I had originally planned to be more thorough in my posts, but I didn't realize I wouldn't want to think much. I'm trying to stay distracted and so far it's been easy since we have so many people here for us right now.

I will say..I got the scare of my life a couple hours ago. One of the doctors came out to talk to us. Asked to speak to us in private and took us to a private room. My. Heart. Nearly. Stopped. I wish he would have given me a heads up before scaring the life out of me. He was only wanting our consent to use leftover tissue for research. I think I shook for a good 20 minutes after that.

I'll try to update when I can. Battery is running low and I haven't found an outlet to charge yet.

I also wanted to thank everyone again for all the prayers and generosity. And also thanks Ken & Elaine for your advice and support. It really really helped and made a lot of sense. :)

Now we wait

2011-01-12T12:23:00.003-06:00

First off, I'm overwhelmed at the outpouring of support from everyone. All the calls, texts, emails, facebook posts. We truly appreciate it so much. You all are wonderful. :)

I don't have much time, Austin's napping with his daddy and these naps are usually very short. I've been meaning to get on here and give a rundown of our plans for tomorrow, expectations, and so forth.

First, our visit with Dr. Yoshor was surprisingly short this time. I won't get into interpreting what I took away from our discussion, just a short overview of what was said. Austin will have the left frontal lobectomy but no corpus callosotomy. They met again and reviewed the scans once more and decided it just isn't necessary at the moment. Also, the portion to removed from his frontal lobe is a very large one. The majority is what he said. Their philosophy is get it all the first time. Although he did mention his main concern is what he described as "the tip of the iceberg". I won't get into specifics right this minute, but it is possible that there is more of the dysplasia that is not showing up on the MRI. However, they were truly impressed with the images on MrI, which is why it was unanimously decided that surgery is his best option. They will be leaving the main motor area intact, however, they will have to remove what is called the supplementary motor area. He told us that this may cause a temporary paralysis on his right side. But, as long as the main motor area is spared, the supplementary can be removed without permanent damage or deficit. Language? This is a major uncertainty. He reassured us that Austin being nonverbal is most likely because of the severe abnormalities in his left frontal lobe. The fact that they will be operating at this age is a plus, however, language may or may not come.

Now, the expectations. He did not want to give us false hopes of seizure freedom and major cognitive improvement. He did say, though, that they are hoping for major seizure reduction and some cognitive development. We go back to the "tip of the iceberg" thing here. It all just depends on if this is Austin's sole problem. He said it is clearly abnormal. Very abnormal. It needs to come out regardless because it is not functioning properly. This may or may not make a tremendous difference. These were not the types of things I wanted to hear two days before, but I pretty much asked him point blank. I needed realistic expectations. I can't deal with complete devastation again.

So, that's the gist of it. Surgery will take place tomorrow morning around 8 am. We will arrive at 6 for all the preparations and such. It will take 4-6 hrs (not the 8 I was originally told). I have lots of friends and family making the trip down tonight. Can't wait to see everyone. Actually, my best friend got into town (and is staying in this very same hotel) on Monday, but we have yet to get together. Hoping she gets her work done and can come by for a much needed visit. We're trying to lay low today. No major plans. Just rest.

One more thing, if you're the praying type, please PLEASE say a quick one today that Austin isn't coming down with anything. I'm completely freaking that he may be catching a cold. Not now!! Please not now!! No major symptoms, just a dry cough here and there. I'm praying it's nothing but his way of telling me to back off (he tends to do that when he's fussy). Sickness is the LAST thing we need.

I'll will most definitely try to keep the updates coming. I'm waiting right now to hear back from neurosurgeon's office about the labs he had done yesterday. They're just checking to make sure he's healthy for the surgery and that all organs are on the up and up. Then we'll have the official green light to show up in the morning.

Thank you, Houston

2011-01-05T11:33:00.004-06:00

It's no secret to anyone I know personally.

I HATE HOUSTON.

Hate it. With a passion.

Of all the cities in Texas, I hate Houston the most. The traffic, the air, you name, I don't like it. I hate that our hospital is there. I hate that we live in such a huge state that it's the closest one to us and it's still two hours away. Austin, Dallas, San Antonio, Ft Worth...hate the drive, don't mind the cities. I've never liked Houston. Even when it didn't spell S-E-I-Z-U-R-E-S to me. It was never a place I cared to visit. Now, after all we've been through there, it will probably be forever tainted in my mind. Reminding me of pain and lost dreams.

Back when I was younger and still had my passion for music, we'd go on a semi-regular basis for concerts. I hated it then, but it was tolerable. I was going for something I loved. I wouldn't even know where to begin to count the concerts I've been to there. Started going when I was 15 and continued until my crazy work hours and the weekday concerts ruined it in my 20's. I think the last time we tried to pull off a weeknight concert, we got in a wreck coming home. Ruined that. Okay, that's off topic. Anyway, my point is, so many people venture over there for all the city has to offer...Entertainment, great shopping, food, the zoo, museums. We never go for pleasure anymore. It's the last place we want to go.

Nope, we've made countless trips to Houston, but not for something we love -or even like. We go for something we loathe -the children's hospital. We go so that Austin can get testing done, blood drawn, and electrodes glued to his scalp. We have to go to hear doctors tell us he will probably never be a normal kid. So, no. We don't exactly get the urge too often to go for the heck of it. We hate it. And it's just too flippin' far and we're usually too exhausted to go for fun anyway. Having a special needs child will do that to a person.

But, for the first time in a loooong time, I'm so thankful to be going to Houston. I'm thankful for that two hour drive for once. So very very thankful we will be close enough to home that our family and friends can be there with us. I can't imagine the surgery being anywhere else. If it would have been in Detroit, we would likely be going alone. I know some of my family will be heading over Wednesday evening and possibly some of Chad's. My best friend is even planning on flying in from Dallas to be there with us. I couldn't ask for a better support system to be with us through this (you beat me to it, Ken -lol).

So, yeah, even though I'm dreading this upcoming trip, having the most special people in my life surrounding us as we endure this most excruciating ordeal, makes the thought of Houston seem...not so bad this time around.

And although the gadgets will be a nice distraction, nothing can replace the need for emotional support and encouragement.

Eight days...

The rundown...

2011-01-04T10:31:00.003-06:00

We are finally finally all scheduled and set for next week. Here's how it will play out..

We'll leave Tuesday for the first of three appointments to take place that day:

Tuesday, January 11
11:30 am
Clinic visit with neurosurgeon to discuss details of surgery and ask questions

1:30 pm
MRI-images to be used during surgery

3:00 pm
Pre-op -Labs and medical history will be taken in preparation for the surgery

We don't have anything scheduled for Wednesday at the moment. We'll most likely stay in Houston though just to keep us from driving back and forth two days in a row.

Thursday, January 13
6:00 am
Arrive for surgery

8:00 am
Surgery

Of course, there are many more details to come. Details of the surgery itself and duration, ICU time, and recovery time are some of the specifics I will get during our clinic visit next Tuesday. I was told that the surgery is expected to last about 8 hours (but after the callosotomy debate, I'm not sure now), ICU for at least 24 hrs, and inpatient recovery 3-5 days. I'm still uncertain about the callosotomy, so depending on which way it goes, all this could change. There will be mapping prior to surgery, however, I don't think they are doing grids. Again, all this will be covered on Tuesday.

My dear and generous husband has me ready to go as far as gadgets to keep me occupied and in touch. Since Austin was born, I've been quite the homebody -not needing anything more than your basic cell phone. I didn't even want a data package on my phone when my upgrade came a few months back. As long as I had my desktop, I was happy. Then, we started really imagining the possibility of surgery, and I told him a laptop would helpful. I think it took him a while to understand my deep need to update and to document this, because he kept saying I have a cell phone to keep everyone up to date...Maybe it was just his bluff, because he surprised me with a netbook and a new mp3 player with WiFi for Christmas! Not only that, my mom also contributed to my electronic stash with a GPS -also with WiFi and internet. So...I'm covered in that department! I have no excuse not to update now. I'm not sure how often I will be able to, but I will definitely make sure someone does. And like I said, we have nothing on Wednesday, so I should have time to at least cover our discussion with the neurosurgeon thoroughly.

By the way, I cannot believe that we were able to get all those appointments on the same day. And I even found out a day early...without having to call them! That totally blew my mind. Now, Chad can work that Monday to cover the health insurance for the week. I can finally breathe about that! :)

Nightline on ABC

2011-01-03T11:23:00.003-06:00

Did anyone happen to catch the Nightline episode on ABC Thursday night?

Mom called me that evening to tell me a friend of hers from church called to let her know they were doing a story on the same surgery Austin was having. I quickly learned it wasn't the same surgery, but still one I've read about numerous times. I meant to post this sooner, but you know how it goes. I must have seen something shiny and got distracted (as Chad likes to say about my short term memory).

Anyway, it was to treat epilepsy seizures (Infantile Spasms even), but it's a more invasive surgery called a hemispherectomy. I did assume for a long time that if Austin ever was a candidate for surgery, this would most likely be the one he would have. Mainly because statistically speaking, it's usually the most successful for treating seizures once the correct side of the brain can be determined (meaning the hemisphere that contains the focus for the seizures.).

We've followed several kiddos on blogger that have had this procedure done (well, close enough, I think I've only followed kids that have had the subtotal hemispherectomy -where motor function is spared, preventing permanent paralysis on the opposite side of the body.).

This was still interesting, because it's not every day that I see the major networks air stories on epilepsy surgery...much less utter the words Infantile Spasms.

Watch it here...

Two weeks...

2010-12-30T11:27:00.002-06:00

It looks like. I'm not certain that it's all officially coordinated, but as of yesterday, we were still on the schedule for January 13.

Of course, it's that time of year. Between holidays so no one seems to be in the office, so I didn't get to personally speak with the schedule coordinator. She's on vacay until the 4th. And the neurosurgeon...out of the country until the 10th. She was nice enough to answer emails yesterday from the clinic ::note sarcasm here::. Apparently we will have a busy week leading up to surgery with imaging and pre-op for the 7th or 10th, clinic visit to discuss procedure with neurosurgeon on the 11th, and the actual surgery to take place on the 13th.

How considerate of them to give me such advance notice! ::note more sarcasm here:: We won't know until the 4th whether it's all official and if we'll need to be there on the 7th for the imaging and pre-op. I don't even know what that consists of yet. The guy I spoke to was just a messenger with absolutely no clue who just reading an email to me.

For the life of me, I don't know how we will work this. I am a planner, people!! AAHHH!! I don't know any specifics and it's driving me nuts. If we have our appointments on the 10th, 11th, and 13th, should we just plan to stay the entire week? Or drive down each day (2 hrs each way). I can't even imagine how exhausting that will be for us. One day is enough to require a full days recovery. Why would we want to put ourselves through that when we will need all the energy and strength we can muster for the days after? Seems like a simple decision, right? Well, here's the catch. Although Chad has a wonderful paying job, he gets zero paid vacation or sick leave. So, there's not only expenses to think about if we stay, but a complete loss of wages for probably two weeks. I guess that's what our savings is for, right?

I'm rambling here. So much clutter in the head going on right now. I think I'd feel better if plans were concrete. I hate limbo. Hate it, hate it, hate it! And this is all just what's on the surface. The planning that I feel like I should be able to control. I haven't even touched on what I can't control.

It dawned on me just this morning while gazing into that sweet face of his and gently stroking that thick brown hair. He was having a cluster. Parents who have comforted their kids through these things may know what I'm talking about when I say it's the single most heartbreaking yet endearing experience. He always makes the most precious expressions that melt my heart at the core. A look that's half pure sweetness and half sheer confusion. I hug him. Kiss his forehead. Run my fingers through his hair. Admiring the perfection that is my son. Two weeks, I think. Two weeks and our lives will be forever changed. Whether seizure free or not, that's not certain. Reduced, hopefully. But, regardless, we will have embarked on yet another journey where there is no turning back. My head is spinning with uncertainties, hopes, fears, and gratitude. I'm grateful that this is even an option. But, I'm scared to death of it too.

And this is only a glimpse of what lies beneath the surface. It's what I'm holding back in an attempt to keep myself sane and why I seem so focused on planning. The planning is not the most important part. But, it's what I feel I can control the most. And I can't even do that right now.

To top it all off, this kid has almost completely refused to nap for nearly two months now. With the holidays, worrying about the surgery, and no clear headed thinking time of my own, my brain has really been on overload. He's also been waking between 4 and 5 am without fail every night since being off the diet (and occasionally before then too). It's like his little body has an internal alarm to get up and have seizures. Sometimes he's only up for a few minutes, sometimes it's two hours. And Bailey...oh my. What was I thinking? I got her a mini soccer ball for Christmas (which she absolutely loves) and I've been having to hide it at times for some peace and quiet. Seems like she's ready to play when Austin's ready to rest and vice versa. So when he does actually nap, it's sometimes short-lived because I forgot to hide the ball. Maybe once a week he'll go down for more than 20 minutes. Please, someone tell me this is just temporary! Surely he's not done napping yet. Don't three year olds normally still take naps???? The only time he seems to want to take a good, solid nap is when we need to be somewhere. Typical.

I will definitely post when I hear from neurosurgeon's office. Maybe Monday, but most likely Tues. or Wed.

Until then...

This will undoubtedly make you feel all warm and fuzzy..

2010-12-22T10:32:00.002-06:00

And give you a reason to believe in the magic of the season. My last post touched on why I love Christmas so much. This is a very clear illustration.

Thanks to Jen for sharing this with me, so I can share it with you!

A truly amazing display of generosity. (It's a little lengthy, which is why I'm including the link rather than the post itself. I promise, though, you'll want to read this.)

Slo-Mo

2010-12-21T09:57:00.003-06:00

Never in my life have I been so eager to get through December. If you've been reading, you know about me and Christmas. I usually want this month to last forever. Wishing there was a pause button to keep December 26th from coming. Always a sad day for me. Seeing everyone resume their lives and get back to the grind. The joy and generosity slowly fading. Just another day.

Sure, most people love this time of year too. And a lot of people are sad to see it end. I'm probably not alone on that one. Despite the chaos, the shrinking finances, and the stress of figuring out how to divide our time between families, it's still always been my favorite month of the year. And I've always always always hated to hear people say they'll be glad when it's over. I've always despised hearing people say they hate Christmas. Made me so sad. Yeah, it's stressful. Yeah, it can be a financial burden. But, why does that have to be the focus? People have always said my attitude would change when I had a kid. They were right. And wrong.

My single greatest joy of the holiday season is seeing people happy. Honestly. When I was a kid, I'm sure it was the gifts. Now, I'd much rather give a great one than get one. I'd be lying if I said it didn't stress me out sometimes trying to find the perfect gift. And I rarely do find it. But, when I do, and I see their reaction...priceless. And, no, it's not always about the gifts. I love to see people get inspired to make someone happy. I love to celebrate the birth of my Savior. I love to believe there is something magical about the season. Love, kindness, generosity, and...miracles.

And don't get me wrong, I'm not hinting that I don't like Christmas or that I'm dreading it this year. But, I'm completely distracted from the festivities. All I can think about is Austin and January. Austin and January. Austin and January. Where is my fast forward?

A couple weeks ago, Chad asked me what I wanted for Christmas. It took me a week to give him any ideas at all. By the way, he completely spoils me. But, there's a catch. I HAVE to tell him what to get me! He will not go shopping without a detailed list. Drives me nuts because I adore surprises. Anyway, I was absolutely stuck. I so didn't care. I wanted to tell him no one could buy me what I want this year.

I want the miracle.

I want no seizures. I want a happy, safe, energetic, laughing, running all over the house, excited, talking Austin. I want to hear him tell me what he wants for Christmas. I want to leave out cookies for Santa with him. I want to see his face light up when he opens his gifts. I want him to open his gifts. I want him to tell him about the Baby Jesus. I want him to oohh and aahh at the Christmas lights.

That isn't something I'll find under the tree.

So, where's my fast forward?

This month is dragging by. I mean dragging.

I still love this month, I truly do. But, dangit, it's going by way too slowly. You woulda never heard me complain about that one before.

We're nearly there, patience, Holli. I've waited two years to find out if he was a surgical candidate. What's a few more weeks? Hard to explain how this feels, some of you know exactly what I'm talking about. Patience is hard to come by when your child's future is possibly at stake. And the potentially life altering moment is penciled in on next month's calendar page.

Does it make any sense when I say I'm ready, but nowhere near ready? Probably not.

This month's slow motion feeling is excruciating, but I'm thankful it's this month and not April or July or something like that. At least it's the one month I truly adore, otherwise I'd be in trouble. :)

Merry Christmas!!

It's not official yet...

2010-12-16T14:42:00.003-06:00

But, we have a tentative date set for the surgery.

January 13.

That is...if we can get everything all in alignment for that particular day. Our neurosurgeon's schedule coordinator lady is supposed to be letting me know fairly soon whether this is actually going to happen. He will be traveling the first week or so of January and won't be back until the 10th. She said she never schedules surgeries for him on his first day back (thank goodness), and we need another clinic visit to discuss the procedure and ask questions (yes, what we should have done at the appointment in November). So, that leaves the 13th. Pending O.R. and imaging availability of course.

I'm annoyed -as usual. We still don't know about the corpus callosotomy and I practically had to stalk her to get this info. Call me demanding, but I really sort of expected them to get this lined up in the very beginning. You know, see what's available and call me. Not, get yet another run around where I feel like I have to stay on top of them and make them do it. Yes, I know there's a lot involved in a procedure of this magnitude -staff, OR, imaging, etc. But, this is not my job. I shouldn't have to keep calling to check in to see if it's been done. I shouldn't be sitting here worrying that she's not getting everything in order and we may lose that slot. I am ready to get this behind us.

Anyway...that's all I know.

And as a side thought...

Why couldn't Austin have flashed just one of these cutsie smiles while we were getting portraits yesterday???

Because that's usually how it happens...

2010-12-14T14:16:00.004-06:00

I'm short on Christmas cards yet once again. And because they're sold in sets of 20 rather than individually or 5 (or even 10 would be ok). I apologize early, but this year's budget is already maxed to our eyeballs and ordering 20 more plus more postage is would have it bursting wide open. I can't justify a final tally of nearly $100 on cards (being the crazy dog lady that I am, I ordered cards from an organization that I'm not even using -sorry, Chad if you're reading this, I may have forgotten to mention that).

So, the budget-friendly Christmas card (crooked and all from my lack of patience with my scanner) :

In photos

2010-12-13T11:28:00.015-06:00

I gave a very long and ramble-y rundown of our past Christmases and traditions in my last post. Kind of depressing if you ask me! I was definitely feeling the heat of the holidays and stressed to the max over my super high expectations.

I've caught my breath now. And exhaled. ::smile::

And I'm ready to enjoy this to the fullest extent. It's far from what I imagined, and certainly not how I hoped it would be. But, it is what it is.

Now, for our Christmases past and present...the fun way! In photos!

Bailey's first Christmas 2006

When Chad was the only brown eyed boy in my life and my only 'child' had four legs. Yes, I was even the crazy dog lady back then!

Austin's first Christmas 2007

He was two months old. I was still sporting the baby weight, and never in my life was I more sleep deprived!

Austin's 2nd Christmas 2008

I had to learn to get creative with the photos since telling him to smile and him actually doing it were out of the question. Lots of fun, but definitely hard work.

Austin's 3rd Christmas 2009

This one was rough. He didn't want to do anything but get up and walk. That Bailey, though, she'll sit as long as you have a treat nearby.

Austin's 4th Christmas 2010

Yep, I decided to go ahead and do photos this year! We haven't done the portraits yet, but we're planning on it anyway. These aren't what I'm using for cards...More of a glimpse of the process of getting a wiggly toddler to stay put, smile, and look at the camera -all at the same time no less! It didn't go over that well, but I was able to find a few that will work.

Christmases past...

2010-12-09T10:38:00.003-06:00

I've always loved Christmas. LOVE it. Even during the stress of the commercialism, lack of time (and usually finances too), and chaos (did you know I used to be a postal worker? lol). I still loved it, and one month of being exhausted was always worth the joy of season. I've even loved it during...Infantile Spasms.

I'm extremely traditional. Really, ex-treme-ly. It kills me to break tradition -especially Christmas traditions. Sadly, getting married (not sadly that I'm married) added even more traditions to the mix and all those long hours keying thousands of Christmas cards at work complicated my previously quiet and calm life. It got to the point where it was physically impossible to keep up with the flow. When I was growing up, we had a traditional Christmas Eve watching of A Christmas Carol (absolutely the George C. Scott -no other would do). It was always right before bed, there was just something magical about it. It didn't matter how many times I would watch it (but I only watched it on Christmas Eve -like I said, extremely traditional), it always evoked sense of love and gratitude within us all. Like watching it the very first time. It's been several years since I got to watch it with my family. I completely missed it year before last, and I think last year I made Chad watch it with me, but not on Christmas Eve. Those are busy busy for us now. His family also has a Christmas Eve tradition. A family gathering in the evening and then gift exchange that night. Gosh, it was so incredibly hard letting that one go. I tried to make it work for about six years. Working on Christmas Eve, heading to the in laws, quick gift exchange, then off to my parents for the movie. Then back to our home (which has never been less than 30-45 minutes away). Then back up to our parents' town the next day for dinner and gifts with my family. A very long day almost always followed by work the day after.

My point? Just a glimpse of how hard I try to keep tradition going. When Austin was born, I just had to get Christmas portraits. He was just over a month old when we got them done. His birthday falls exactly two months before Christmas, so I thought that instead of getting annual age AND Christmas portraits, that we could just get them done at one time. The first year was just how I imagined it. The next year...well, he'd been seizing for almost eight months by then. It was his portraits that made me see what the meds and seizures were doing to him. Just two months before his seizures started I had some five month portraits done. I had some of the most engaging, alert, and vibrant smiles you'd ever seen. By Christmas, we didn't get a single smile on camera. Not one. His face was drooping from the loss of tone and drool was in nearly every photo. But, I still went the next year (last year) and we did get a couple smiles. I booked for early November this year. He was doing SO well. His giggles and smiles. Seizures were still a problem, but manageable (since we have to keep his helmet off). We've had to reschedule twice and it appears that the smiley, giggly boy I was so excited to capture on camera is fading. Now I'm debating postponing again indefinitely.

It seems like he always slips about this time of year. The first year (after seizures started), we'd just started Vigabatrin that November. We'd increased his Zonegran so much that he was like an empty shell of a boy. No sparkle, no interaction. Last year, we'd been tweaking his meds again. He had such a wonderful summer full of new developmental gain and laughter. By November, drops were back and life was barely tolerable. Same goes for this year. We weaned the diet and all seemed to be okay in the beginning. Now...he's had four bloody lips in less than a week. And I watch the kid like a hawk. I'd probably be pushing to get him back on the diet if it weren't for surgery. He can't be on it if we go that route. And the jury is still out on that one. I'm waiting on a call as I type. I'll get into that in another post.

Again, my point. As much as I want to just enjoy this time and keep it going as if he were okay, I just don't know if I have it in me. Oh, and the Christmas cards! His first Christmas was simple, sit him in his bouncy seat by the tree and have Bailey sit beside him (she's a posing pro by the way). The next, a little more challenging, but we made it happen in his Radio Flyer wagon with him as Santa and Bailey a reindeer lol. Last year? A nightmare. He was miserable and just wanted to get up. Of course, me trying to take that task on completely by myself was a really bad idea. How in the world will I pull it off this year? And do I even want to attempt it? The Christmas tree is just a few little Austin steps from a brick fireplace, a ceramic tile entry, and a sofa table. Red flags galore! But, how will I feel next year when I'm putting out my Christmas decorations and there's no photos from this year to display? How will I feel when I don't have any cutsie Christmas tree photos to scrapbook? Defeated.

I've always always always gotten on to my mom for letting trivial things get to her during the holidays. Now look at me. It feels like total defeat. Every Christmas I've tried to make the best of it and say next year it will be different. Next year. Three down and it's not different. It's worse. That's not to say I don't have faith that we will get through this. I'm just disappointed that it hasn't happened yet.

Maybe there's something better in store for us in 2011. I can only pray that there is. Until then, I guess I will just have to suck it up and get through one more? Hopefully?

(I'd planned on sharing the Christmas card photos from the past three years, but I forgot that only last years are on my computer! Maybe I'll dig them out and post them soon along with this years when we get it done. Yes, I'll probably do it. Breaking tradition does not come easily for me! lol)

Is less more?

2010-11-24T11:57:00.003-06:00

Well, yesterday's appointment couldn't have been further from my expectations. This will be a super quick summary as it's already noon here and I have yet to start baking my goodies for Turkey Day tomorrow (had lots to catch up on since yesterday -rest mostly!)...

First, we didn't schedule the surgery like I thought we would (or told we would). There seemed to be some confusion regarding whether or not a corpus callosotomy will be performed. After the first surgical conference (the one where they said a clear 3T MRI was needed to determine surgical candidacy), our doctor told us the proposed procedure would most likely be a left frontal lobectomy with the corpus callosotomy (a procedure usually done for drop seizures that disconnects the two side of the brain to cut off communication -therefore decreasing the chance for seizures to spread (or generalize). But, after the most recent conference, it was decided they would not do it. So where's the confusion? Well, once we met the neurosurgeon and he asked some questions, he started to question whether or not to go ahead and do it with the lobectomy versus waiting to see if it would even be needed. See, Austin does have a very very obvious and clearly defined lesion on his left frontal lobe. No doubt it's a cause for seizures. However, the million dollar question is...Is it the source of his drop seizures? Why? In his opinion, it's quite unlikely that such a generalized type seizure is originating from that one little place. Possible? Yes. Which is why he would like to just do the lobectomy and then, if needed, the callosotomy at a later time.

This was extremely disheartening. Although our doctor did not give me high expectations for complete and total seizure freedom with the surgery, he did sound very confident that this was the spot. The big bad spot that has wreaked havoc on our lives. That although not 100% sure this would be the be all end all, we had a very good chance. So, to hear this...very scary. And why not have one surgery and be done with it? Why take the chance to have to operate on my baby's brain a second time? In his opinion. Less is more. You can go back and do more, but you can't undo anything. I talked about my lack of recent research in my last post, but this one needs some googling. I will have to really understand more about this procedure before I will understand why he thinks two brain surgeries could be better than one.

We didn't get a chance to get too in depth with specifics. In part because our epilepsy doctor happens to be in London (he's always abroad when we need him) and couldn't be reached. He really didn't want to overwhelm us with too many possibilities. I think he came in with a plan of action and abandoned it when I told him how the drops ruin our lives. Even so, he still doesn't want to do the callosotomy with the lobectomy, but didn't want to mislead me as this would be a group decision. He thought it was worth another discussion.

So this is where we stand. Definitely a lobectomy -most likely the first of the year. Possibly a corpus callosotomy, but maybe not. We got a lot accomplished, huh? By the way, it's hard to really convey the intended sarcasm in writing! It was actually a colossal waste of a day. All of this could have taken place over the phone, and none of it was real news. I did get to meet the guy (and this is one that actually has a decent personality), but that's about it. We rushed out yesterday morning, fixed a flat when we were already running behind. Dealt with traffic delays and weather because this appointment was far too important to reschedule. Sat in the waiting room for two hours. To not schedule the surgery or learn anything we didn't already know. My whole body ached when we got home.

Now...I must bake!

Tomorrow's the day...

2010-11-22T17:14:00.002-06:00

We will meet with the neurosurgeon, Dr. Yoshor, to discuss Austin's (potential) frontal lobectomy.

So far I'm relieved to say that I'm still relatively calm about everything. Why get too worked up until I hear what he has to say? That's what I've been telling myself...repeatedly.

It feels as if I'll be walking into this appointment with a blindfold on. Unprepared and under informed. I did my own research on this guy, and I'm comfortable with that part so far. I have not done much research on the proposed surgical procedure though. I decided to abandon the whole "internet medical degree" and go in with a fresh mind that's clear of previously read research studies and other parents' accounts. Why not be as prepared as possible? First, I couldn't find much on anything similar to Austin's case as a viable comparison. And second, because I didn't want any other studies to skew my thinking and understanding of what I'll be learning tomorrow.

This is not (at all) to say I don't have tons of questions ready to fire. And already gained knowledge from my two years of researching and following epilepsy surgeries. I just didn't think it was necessarily a good idea for me to go in with the assumption that I already know all about frontal lobectomies, or how it will affect Austin.

It could very well be just a coping mechanism rather than a game plan, but regardless, that's how it's gonna go. By coping mechanism I mean my way of not overwhelming myself before I hear it from the doctor himself. And not drawing my own conclusions and so on. One of my personality flaws is that I tend to over analyze everything. When I do that, I start to make my own assumptions and then the worry sets in.

Anyway, because I haven't spent every spare moment on googling frontal lobectomies, I am actually in a fairly peaceful state of mind. We'll just go in there and see what he says and decide from there. That's my plan. No second opinions until I speak to him, no freaking out over articles I've read that may or may not have a drop of relevance, and no false hopes.

That's it.

I'll definitely update at some point tomorrow or Wednesday.

Life After Keto

2010-11-18T12:11:00.006-06:00

It's been eight days since we said farewell to the keto way of life. I mean that literally too. It wasn't just a diet, but really and truly an entire life change. From calculating the meals to the these meals actually controlling what we could do and when, we had to shift the way we lived for over eight months.

And I'm still adjusting. Austin's doing a much better job at it than I am. The giggles at meal time tell me so. Don't get me wrong, I'm not missing the diet (at all), I'm just still trying reset my mind to regular life again. I still wake up in the morning and immediately look at the clock in fear that we may have overslept for Austin's breakfast, because that one meal sets the tone for our entire day. Meal spacing was very very important. If breakfast was late, lunch was usually late. If lunch was late then his snack was too, etc. As crazy as it may sound, the time he ate his breakfast affected what time he would be going to bed that night. Or, when I could get out and run errands, or whether therapies would be interrupted. The meals ran my life. Now, it's about getting back that spontaneity that I forgot about and not feeling like we're on lockdown anymore.

I'm still very hesitant about sweets and sugars. Honestly, Austin never really got full doses of that kind of stuff anyway. Everything I bought pre-keto was usually already the "no sugar added" or "unsweetened". When we started the weaning process, I imagined a pigfest of cakes and cookies and all the juice he could drink when it was over. So far he's had a few bites of cookie and he's still drinking water. But, hey, water's good. And now he loves the stuff. I see no reason to spoil him to tons of sugar where it will be a battle to get him to drink it willingly again. As far as the sweets go, the dietitian advised me to slowly add those in and to start with complex carbohydrates first. I'm really not in a big hurry to get that going like I thought I would be. The kid is happy just having his toast back!

As for the actual meals. That took me a bit too. I was really not expecting them to give me the green light on that particular day. I knew it was coming soon, but I wasn't sure exactly when. I hadn't been to the grocery store to stock up on Austin's old favorites yet, and I was still very much still stuck in keto-mode! So many people were anxious to know what I gave him for dinner that night. I'm pretty sure my mom cringed when I told her...salmon and broccoli & cheese (similar to a keto meal I would make him minus the oil and butter). I told her, But there's no oil and the butter was flavored with lemon! Oh, well. He enjoyed it.

It wasn't until the next day that the thought finally occurred to me that Austin could actually eat with us again. That I didn't have to make him his own "special dinner". Crazy, I know. But, when you live a certain way for so many months, it becomes normal. I've always been the first to admit that I'm not the biggest fan of cooking. I love the idea of cooking much more than the actual act of it. I dig the Food Network and love trying out new recipes...But, that's where my love of it ends. The day to day cooking...not so much. On the diet though, take out and cereal for dinner is not an option, no matter how tired or desperate for a night off you are. So, I'd be lying if I said my hubby didn't lack a home-cooked meal on a regular basis. The thought of cooking one more dinner would have sent me over the edge some days. Some days I would make up to twenty meals to prepare for the week, so Chad and I sometimes sacrificed because I was too pooped. He was probably just grateful he didn't have to manage the diet and prepare Austin's meals that he never once complained that it was chili dogs, sandwiches, or take out again for dinner. Bless him. lol

I have to say though, I've actually enjoyed cooking a little more over the last few days. Surprising Austin everyday with something new or an old favorite and getting his reactions have been worth it. After I (finally) made it to the grocery store, and cooked our first Austin included family dinner in over eight months, I couldn't have asked for a more delightful reaction. His laughing through the ENTIRE meal made scrubbing all those pots and pans no sweat. Hamburger steak with mushroom gravy, fresh baby spinach sauteed with garlic, onion, and bacon (we're Southern, bacon goes with everything -lol), mashed potatoes, and yeast rolls...The baby cleaned his plate with a smile. :) And let's not forget last night's first. Pot roast, carrots, and garlic & creamy potatoes (hey, I needed to use some of this cream I have left over..and yes, we (Southerners) love mashed potatoes very much -they too can go with just about anything)... Gosh, I sound like a facebook status where people are telling you what they're making for dinner. Any of you notice I've never done that? Because McD's is nothing to rave about! lol

And the seizures post-keto. Not what I would have hoped. Lord knows I didn't expect them to get better, but I was at least hoping they wouldn't get worse. It's been pretty rough. Whether or not it's because of stopping the diet, I can't say with certainty. It could be. Or it could be Austin's typical seizure cycling that he tends to do. Up and down to the point where you don't even know if meds are helping or not. When a change takes place, like a wean or med addition, I tend to "forget" how his seizures can fluctuate when there's been no change in anything for a while. I sometimes focus on the change that occurred and it's to blame (hence the Zonegran wean that took over a year). Truth is, there is a reason we chose to wean in the first place and it wasn't because of achieved seizure control. It was because on days like these, I thought why? Why put him and myself through this insane diet when he still has these days? And maybe stopping the diet is a teeny weeny bit to blame. We definitely saw great improvement at first. And maybe it was still helping to an extent and we didn't realize it. But, the risks of the diet (side effects such a ketoacidosis, elevated lipids, kidney stones, etc) were starting to outweigh the benefits. Not to mention the interference in his feeding skills and the strain it puts on the entire family. We probably saw a 50%+ reduction in seizures with a 100% reduction in drop seizures for the first two months. If you read this post, you know where I stand on that. I'd still be calculating, weighing, and scraping food right now.

We'll just have to wait this out and see....

Adios Keto

2010-11-10T15:02:00.004-06:00

Little did I know that within an hour of publishing my last post, I would receive a call from Austin's dietitian saying it's okay to DISCONTINUE KETOGENIC DIET!!!

I had placed a call earlier this morning to report his trace ketone readings (she told me once I started seeing trace to no ketones we could probably discontinue). Of course she had to check with the keto team leader first, so I was skeptical that today would be the day.

The above photo shows just a few of our (former) daily necessities. I really wanted to put the scale under the wheel of my Pathfinder and put into Drive...But, what the heck, it may come in handy one day. lol

Goodbye weighing, and restrictions, and scraping every last bite. Goodbye greasy bottles and bowls and an endless sink of dishes!! Goodbye heavy cream, gobs of butter, and oily messes!!

Hello flexibility, munching, and MILK!! Hello Goldfish, and Teddy Grahams, and Cheerios!! Hello pancakes, and grilled cheese, and peas!!

Tonight's dinner has GOT to be good. But, I have NO CLUE what I will be making him! Too many possibilities!

I do know that lunch was a hit. That first bite of grilled cheese stirred up some major giggles! He actually got so excited that when he finished the few pieces I put on his tray, he reached over for the plate on the table. To the floor it went (of course I had my camera in one hand so I couldn't catch it in time). Bailey was happy. lol Thankfully, I had made myself one and hadn't started it yet. He's taking a big chunk of mine in the photo. :)

An actual update?

2010-11-10T10:34:00.007-06:00

After months of biting my tongue, I guess it's time for full update. No surgery talk, just what's been going on. I'm still not quite ready for spilling about what's ahead. Maybe soon. Maybe not until we discuss specifics with the neurosurgeon on the 23rd. Because until then, I doubt my mind will be fully wrapped around the idea.

So, on to the latests...

As some of you know, we've decided to wean the ketogenic diet. We are in the very last stages now, and the anticipation of resuming a typical diet is growing by the day! Oh, I can't even imagine how much more simplified our life will become! Don't get me wrong, as each month passed, it did get easier...BUT, the fact that we will hopefully soon have the freedom to just go without an ice packed cooler with pre-made meals is going to change everything. No more strict windows of opportunity to get out and get back before mealtime. Trust me, as difficult as that's been, it much more stressful (for me) to line up, weigh, prepare, and pack food for an errand or outing. And I've tried to really stick to our schedule...Which, between Austin's naps and various therapies, it's not always easy to make it happen -whether I pack them or have to prepare it when I get home. I used to have days I would set aside to prepare the majority of meals for a week or two. I would freeze them and reheat them as needed. But, once we decided to start the wean, I've just been winging it everyday -especially since we starting lowering the ratio on a regular basis. Plus, I've gotten into such a rhythm that it doesn't take me nearly as long as it used to to get something whipped up. :) I remember the very first meal I made here at home. It took me nearly an hour to make his breakfast (egg, cheese, butter, cream, & applesauce)!! Now, it takes less than 15 minutes. Like I said, much easier! ;)

Another big one. We FINALLY (and I can't stress that enough) made it through the Zonegran wean. He'd been on that one for nearly two years. It was just one of those questionable ones that we would always second guess. The difference is absolutely remarkable! He's so much more alive now! That's why included so many photos. He keeps smiling and I keep snapping! I'll get 10-20 per sitting and when they're all smiles, it's impossible to delete! I've waited too long to get those again. Makes my heart all warm and bubbly. :)

We've also noticed quite a difference in cognitive and motor development since the wean. In addition to his brighter smiley faces, he's reacting to so much more. Initiating interaction, responding to requests and gestures, communicating his needs better...just to name a few. He's also starting to climb and has a new found need to explore his surroundings more. Before a couple months ago, I could strap his helmet on and let him go in his playroom with a gate at one door way and ottomans blocking the other. He'd stay there completely content. Or, I could leave him in his extra large play space (super large play pen) and he'd be fine there too. Oh, man...not now! He lets me know when he wants out of the play pen, and when I put his helmet on, he either reaches for my hand to help him climb over the ottomans or tries himself. He can climb onto the couch unassisted now (which takes encouragement, because he'd much rather be climbing OFF the couch) and has his route he likes me to take him throughout the house. (Because of the seizures, he still can't do this freely. When his drops came back last October, we had to start holding his hand again on the hard floors.)

So, how are the seizures after the Zonegran and diet wean? Well, they're not worse. But, he's most likely going to have surgery so they're very much still ongoing.

Saying goodbye to the diet is a little bittersweet. I'm dying for this to be over, yet a little sad to admit it was a failure for us. We saw so much potential in the beginning. Nearly two months of no drops was wonderful and to be honest, we probably wouldn't be weaning if they were still gone. With or without other seizures. The drops are what makes this 100x harder. The drops are what keeps him restricted and limited. No seizures are okay, but those complicate our already complicated life to an extent only a parent dealing with this would understand. To not be able to buy certain toys because they are a safety hazard, to have to make sure every seat has a shoulder harness, to have to pad everything imaginable, to have to carry him all the time or have him in a stroller because he cannot safely walk on his own has been indescribable as a parent. That's all I can say...there are no words to describe what this life is like with these drops seizures occurring on a daily basis.

THAT is why it's been so difficult for me to comment much on the possibility of surgery. Our life has been so full of accommodations that just letting him be is hard to fathom.

Austin loves getting his arms rubbed and tickled. He'll hold them up to you if he even senses your hand is nearby. In this case, he was holding it up for Bailey to rub. She obviously wasn't interested. ;)
But, I helped him out and got some giggles. lol

This was last night after an extensive play session. Don't know what got into the kid, but he decided to run sprints across his playroom until Chad intervened! We're still getting used to Austin sweating (he couldn't sweat while on Zonegran which we had to take very seriously as he could get easily get overheated. We had to strip his clothes off and his head was soaking with sweat (under the helmet). I just had to snap this new Nick Nolte 'do! lol

So his sweet little face has been breaking out since being on the diet. No one knows exactly what's going on, but it pops up and clears up on a regular basis.

I got him some awesome sensory balls for his bday. He LOVES the texture and I LOVE that I can usually get some belly busting laughs out of him when I rub them on his hands!

Flashing a smile full of Goldfish. He's finally on a low enough ratio that he can have them again. He enjoys every last one of them!

Is it just me?

2010-11-05T17:02:00.002-05:00

Or does everything seem a little bit more beautiful today?

I couldn't get that out of my head as I drove through town today. Even lugging my 37 lb three year old into the post office didn't seem to break my smile. Yes, an errand as "simple" as a stamp run can put a damper on my day very quickly. Life's little dailys have gotten just a wee bit more difficult lately. The bigger Austin gets, the harder it gets. With the seizures it's impossible to just get him out of the car and put him down so he can walk with me. It's either the stroller (another pain) or my hip (which is begging me for the stroller). Not today. The load wasn't near as heavy or maybe I was stronger...Maybe a little of both?

That weight of "the not knowing, the what if, the when" was lifted from me today. I was stronger, I think.

The call came at 11:46 am. I had just gotten everything situated to check ketones (keto moms know what this means). I even remember what I was thinking just before I heard it ring. I thought, "Yeah, I'll bet he calls now, while I have a ketone strip end in my mouth, a urine soaked cotton ball in one hand, a syringe in the other, and Austin's bare-bottomed." No surprise there, two seconds later my phone was ringing. HA!

I pretended I was calm and exchanged the pleasantries, but my mind was screaming!!!! GET TO IT DOC!!!!

Anyway, long story short...The whole team was astounded at just how "absolutely, amazingly clear" the 3T MRI was. He said that was exactly what they were hoping for and they all agreed in favor of surgery.

Which will be (no major specifics until we meet with neurosurgeon) a left frontal lobectomy. They even said they didn't feel that any additional testing was necessary as the MRI was so amazingly defined.

We meet with Dr. Yoshor, the neurosurgeon, November 23.

I definitely have a lot more to say, but I'm still reeling and had a hard enough time just composing the facts...can't imagine interpreting what I'm feeling at the moment! Relief, disbelief, awe, anxiety, fear, satisfaction, gratitude...just to name a few.

We have more HOPE now!! The door is OPEN!!

Waiting

2010-11-04T10:33:00.003-05:00

It's been months since my last post. It certainly hasn't been because I've been super busy. I just haven't wanted to to be completely honest. I really haven't had the desire to sort through everything we've been dealing with -in an emotional sense. Probably because I still don't even know myself what I feel. My facebook friends have an idea what's been going on for the last few months, and they probably also know I've become the "crazy dog lady" too lately...lol. What a distraction that has been. Much much needed. I needed something to take my mind off researching seizures and resection surgeries to keep me from going nuts.

It hasn't been working for the last few days. I just entered Day 3 of waiting on "the call". How a doctor can purposely postpone one of the most anticipated phone calls a parent can get is beyond me. I'm amazed at his audacity to make me wait like this. And for those of you scratching your heads because I haven't been in touch...

I'm waiting to hear whether or not Austin is a surgical candidate for epilepsy surgery. Every single time the phone rings, I start trembling...my head spins and I feel nauseous. This makes the fourth time I've waited on a call like this in the past month and a half. First for the PET scan results, then the first surgical committee meeting, then the 3T MRI...Now the second surgical board meeting. Each and every time I thought we would get huge info and some type of direction.

Our lives have pretty much been on hold this entire time. Not knowing which way to go because everything is dependent on this call. And while I wait, I imagine both scenarios in my mind. Scared to death either way. Will I really be happy if he says they recommend surgery? Not really. I never ever wanted this. Relieved maybe...not happy. Will I be devastated if they say no? I don't know. I do know we will get a second opinion, but I honestly don't know how I will feel either way.

So, this is exactly why I haven't been posting. My emotions are swirling and it's been so much easier to let myself be distracted because until I know what their decision was Tuesday morning...there's just nothing. No news, nothing but nerves and confusion.

And just to recap all the evidence we do have to support Austin's (possible) left sided focus:

MRI with suggested dysplasia left frontal lobe (Feb 10)
48 hr EEG with slightly more activity in left hemisphere (Sept 10)
3T MRI with suggested dysplasia left frontal lobe (Oct10)
Early left hand preference with slight right sided hemiparesis (noticed Sept 08 -ongoing)
Visible right sided seizures (videotaped July '10)
Right hand irritation (May 08 -present)

Looks kind of convincing, right?

Not supporting this are FDG & FMZ PET scans that show right sided abnormalities (March 09)
That coupled with the fact that all the other evidence is subjective. Nothing is a clear indication or very well defined. It can all be interpreted differently depending on who is viewing it. THAT's why I'm a wreck. Because it could really and truly go either way.

Maybe we'll find out today...maybe.

Imagine my surprise...

2010-07-08T09:36:00.003-05:00

...when I actually received a call back this morning. I had already decided I would have to place a call myself after Austin's breakfast to give them a nudge. Surprisingly, I didn't have to.

And once again, I was shocked when I found out our doctor actually wanted to do more investigation. Another dreadful EEG, possibly up to three days this time depending on how long it takes to capture all his seizures. And a PET scan. I was confused on this one since I wasn't aware that there was one in the area that was capable of accurately scanning Austin. Turns out, it's not at our hospital, but another one in the community. Wonder where that may be. Maybe the hospital I'm trying to get into. Regardless though, I'm pleasantly surprised that they're taking this seriously.

There definitely are several questionable factors in the equation. The first being the EEG. The second being last year's PET. But, with solid MRI evidence, they think it's worth checking out. Especially since his seizures have taken on a new appearance, the premature preference for his left hand, and the obvious signs of right sided discomfort in connection with seizures. She certainly seemed hesitant in giving me much hope, but the fact that they are willing to check it out is enough to go on for the moment.

In other news, the doctor I was trying to switch to...not taking new patients...as of two weeks ago. That so figures. On top of that, there's not another epilepsy specialist in the hospital. I asked about a recommendation for another one, which turns out to be about 5 hours away in Austin. But, my mom actually found a job posting where they are looking for new epis, so we'll see what happens there.

Here goes nothin'

2010-07-07T10:22:00.002-05:00

In a desperate attempt to get this whole MRI thing resolved, I broke down and emailed Dr. C. I had originally planned on waiting until hearing back from our clinic and getting their opinion first, but I just couldn't help myself. It tore at me all weekend and keeping in mind their history of response time vs his...It was a no brainer.

I spared no detail in my original message, fully expecting a negative response. What I got?

Not quite as negative as I thought. Although he said it could be an indication of bilateral abnormalities, he did leave the door open and seemed eager to look it over. He explained that focal slowing typically means there is a structural lesion on that side, but still wanted to review them before making assumptions. Of course, there's no telling when our hospital will actually get the discs sent over. Why can't I ever remember to request copies while we're there? Ugh, I want to kick myself sometimes. Actually, in my defense, I truly don't think I was expecting any change in the MRI. I thought my correspondence with Detroit was history. I guess it may be after he reviews everything. But I gotta keep trying, right?

Regarding the MRI

2010-07-05T11:25:00.004-05:00

I've had a little more time to process the information I received on Friday (the left sided findings from the MRI), and realized this probably doesn't change much. It may, in fact, be another indication of bilateral abnormalities, largely due to the VEEG he had back in January. Although there was no focus detected, there was focal slowing to the right side between seizures. Not the left. The two do not correlate at all. That's definitely not good.

I was so distracted by the fact that there was finally evidence that supported my left sided theory that I didn't stop to really focus on the main issue. Yes, there's a left sided abnormality. But...it's extremely likely that there's a right one as well. Which probably explains why I wasn't informed and steps were not taken. I'm certainly not defending a doctor that did not have to decency to discuss my son's first abnormal MRI, but I'm starting to understand why is wasn't a pivotal moment when the results came back.

I'm still planning on trying someone new, regardless of the outcome. Many of you know I've never been satisfied with our current hospital. But, it was the only place in our area that any of the other doctors and specialists we've seen have recommended...especially Dr. C. I truly valued his opinion and if he said we should try to stick with them, I thought I'd give it another go with an open mind. Well, it's been over a year and I'm still not happy with them. I'm thinking I'll most likely just try to get an appointment at the other hospital in the area and just see if they're a good fit and go from there.

I mainly just wanted to clear up the inconsistencies from my last post. I knew at the time that the EEG wasn't particularly supportive, but for some reason I thought it could be wrong or not even be a major factor. But, after all the nonstop thinking and comparing other test results over the weekend, I finally stopped and saw it for what it really is. Very likely bilateral. I really just wanted to believe that it wouldn't matter. I guess that's just what happens when my heart responds more quickly than my brain.

New findings

2010-07-03T11:44:00.002-05:00

I finally got the disc of seizures/behaviors together to send to our clinic. Then spent an entire week anxiously waiting to hear back, and finally yesterday I did.

Even though I included a very detailed note, it still took quite a bit of conversation to convince them of my purpose. Which, by the way, was two-sided. First, I wanted to know if they could identify the types of seizures Austin's been having, and second, whether or not there is any significance to the right sided behaviors and seizures. I practically had to spell it out. And what did I find out?

Well, first of all, they are categorizing his seizures as tonics and atonics.

But, the most surprising of all?

ONCE I finally got the message across that I wasn't concerned that the hand slapping and leg grabbing were seizures, but rather an aura of sorts, I got her attention. By the way, I still had to get past the fact that our lead doctor didn't care if they were auras or not. He said that regardless if it is in fact an aura, it doesn't matter. I told her my concern wasn't whether it was an aura, but does it give any indication whatsoever of a focal point? That in combination with his recent right sided seizures AND the early preference for his left hand.

"Well, that's a very good question, and that's exactly the types of things we like to look for in trying to locate a focal point."

Okay...so....?

Here's the most mind boggling part for me.

She looks back for the report on his most recent MRI (from February). I never did get the results from this one. I cornered our doctor in the elevator and asked him while we were in the hospital initiating the diet if he had results, and he hadn't reviewed it yet. He pretty much said he would let me know if there was anything different. So, about five months later, I'm still assuming it was clean. But it wasn't. And no one notified me.

Apparently, there appears to be dysplasia in his left frontal lobe. LEFT.

And when I inquired about whether or not there was any significance to his latest behaviors and seizures, he didn't even bother to think about it. He just said the hand slapping is not a seizure (which wasn't at all my question) and that it could be an aura, but it "doesn't matter".

Needless to say, I'm 100% convinced that it does matter. And the doctor I was speaking to (she's the one we've been dealing with for the diet, but reports to our main epilepsy specialist) agreed.

She said that she certainly believes this warrants further investigation. Duh.

However, there is one potential problem. There is no correlation with his last VEEG (from January). Actually, even though there's no focus indicated during the seizures themselves, it shows more activity on the right side between seizures. Which is not supportive of his MRI and behaviors.

She said they definitely need correlation to pursue surgery, and will discuss with our other doctor what steps we may need to take in order to get more information. She's already mentioned the "E" word. I hate that one. EEG.

I, on the other hand, have another plan in mind, depending on what his opinion is. I'm thinking (especially if he blows me off again) about another doctor in another hospital. In fact, I think I've already found one. They boast a PET scan & the only MEG scan in North America specifically developed for children. And it just happens to be in the same medical center. I don't know what the chances are for getting a MEG scan. Or the PET. Or even if the PET scanner they have can accommodate a child Austin's age. But, if we don't transfer we certainly won't get them done. And if we do transfer, we'll at least have our foot in the door and be one step closer to getting these tests done.

I was just talking to my mom this morning. I think the part I have the most problem comprehending, is that this guy has all the education and the resources to try to make a difference in a child's life. My child's life. And, as she said, he dropped the ball. Now, I don't know whether or not Austin is a surgical candidate, but what if he is? And this doctor doesn't even care. This isn't just any situation. It's my son's future. His entire future is on the line here. I've completely lost any and all confidence I had in this guy, regardless whether or not Austin's seizures can be stopped by surgery. I just can't trust that he's trying everything in his power to help us.

So, that's where we are. Oh, and by the way, we're going down on Austin's ratio on the diet. Seizures and lipids are just too high to continue like this. The risks are starting to outweigh the benefits. Our plan is to lower it slowly and monitor closely for changes. If the seizures don't change we will keep lowering it until we either: a) see a change, at which point we will reassess the diet's effectiveness, or b) have him completely weaned from the diet.

For any of you parents that have dealt with the surgery, I'm curious how many of you have had solid EEG evidence correlating with the PET and/or MRI. I know it can't contradict, but how many have proceeded with surgery without a useful EEG?

Another clip

2010-06-22T15:21:00.003-05:00

This is another clip of Austin grabbing his right leg and slapping his right hand before/during/after the small set of spasms. I find it extremely odd that there were right sided abnormalities found on the PET scan. If anything has ever been consistent during this rollercoaster of IS, it's that he has never strayed from the right hand issues. This has been going on since just before I saw the first spasms. It has never been his left hand and the frequency and severity of it has only intensified. Not only that, but it goes with his partiality to his left hand (he's shown a preference since he was 9-10 months old). And now? His head jerks to the right with certain types of seizures. I so wish we could get a repeat PET scan. I just wish we could do it closer to home. I guess just because he has consistent left hemisphere symptoms, it doesn't mean it's not bilateral. Not that I'm wanting to revisit the surgical world...but, I just wish I knew why his behaviors and symptoms don't seem to support the findings.

What kind of seizure is this?

2010-06-21T17:21:00.003-05:00

After months and months, I was finally able to catch this seizure on video (47 seconds into the video). I have no clue what type it is -if it's not a spasm. I'm hoping someone more knowledgeable can help me figure this out because my description to our epi hasn't resulted in a definitive answer.

Also, check out how Austin grabs at his right leg about 30 seconds before the seizure. This is typical as is the way he slaps his right hand (in another video I'll post soon). Another thing I've noticed and been trying to catch is the change in his left eye after these seizures. I know it appears to be the helmet, because when I take it off in the video, it looks normal again. I think this is just a coincidence because his eye does this with or without his helmet on. I'm curious what's causing this. I've noticed changes in the appearance of his eye since his diagnosis. I always thought it was nothing, until lately when it started getting more pronounced. The eye may be difficult to spot...the video quality is awful.

Days like today - I didn't want to...

2010-05-20T14:40:00.002-05:00

But, I couldn't not acknowledge this day...or this entire week for that matter. I mean, it's sole reason behind this blog.

Another year has gone by. Two total since we began this journey. On May 19, 2008, we made the two hour drive to Texas Children's Hospital in hopes we would be sent home with a new found peace. Instead, we spent the rest of the week there. And on this day that year, May 20, 2008, Austin had his first EEG. We were still clueless as to what that really meant. Even after returning home with a new diagnosis, we had no idea what it really meant.

I wish I never really did have to find out what infantile spasms meant. Thinking back to the prego days, I always wanted a happy, healthy, thriving baby. Health was critical. And he is healthy. But, in all the times I worried about things that may happen or complications or diseases I feared...I never once thought Gee, I really hope he doesn't develop epilepsy.

Nope, never entered my mind. Never realized how severe it could be. To me, epilepsy was not an ongoing battle. People I knew of that had it only had occasional seizures. Certainly not 100+ every single day. And none had deficits because of it.

Even with all my new spiritual growth and optimism, I can't deny that days like today don't nag at me. I do still grieve over the life we didn't have and the milestones we have yet to reach. Days like today force me to wonder what life would be like right now had the term "infantile spasms" never been said two years ago today.

I would probably still be an over the top safety nut...a constant worrier...and a proud mama. I would most likely be dreading the beginning of potty training days right about now. I bet I would probably enjoy getting out more than I do now. We probably would have made lots of family outings by now...restaurants, shopping, the zoo, boating at the lake, parks, and maybe even a vacation? Who knows, I might would even be working and/or thinking about family additions at this point.

It's so easy to go "there". That place you wish you were. So easy. It's sad...very sad when you snap out of it and realize you're not there and may never be. But, if these past two years have taught me anything, it's that anything can happen. And not just devastating epilepsy disorders like infantile spasms. But, good stuff too. At least five of the eight kids that I have followed closely over the past couple years are seizure free now. Just because something horrible has happened, doesn't mean it will always be this way. That kind of thinking and my faith is how I manage days like today.

We'll get there too.

Jay Mohr on Diaper Duty

2010-05-13T13:30:00.001-05:00

I had to lighten the mood a bit since my last post. This definitely made me laugh! :)

A must read for any of you potty training parents...or actually just about anyone with a sense of humor!

Jay Mohr on Diaper Duty

In honor of Mother's Day

2010-05-06T14:25:00.002-05:00

So, this Mother's Day weekend has already gotten off to a terrible start. I woke to a text from my mother telling me to call her when I got up. I knew before even calling what happened. My great grandmother was gone. I can't even describe what an emotional year this has been with both sides of my family. We've lost too many loved ones lately...Chad's family included. And to make matters worse, it's almost Mother's Day. And I've had the looming reminder that we buried my other grandmother eight years ago this week. There's more. Just last week Chad lost his aunt and two days later I lost a great great aunt (my great grandmother's sister). All mothers. And grandmothers. Two were great grandmothers. And one a great great grandmother. All dearly loved and all will be dearly missed this Mother's Day.

Is it May already?!

2010-05-02T14:50:00.007-05:00

Yikes, has it really been that long since my last post? I've been so buried under the day-to-day that I didn't realize it's been over a month.

I have to say...it's been a relief to have had a break though. Freeing myself from the nonstop obsession with IS has helped me. Not that I don't still think about it nearly every minute of every day, but it's different when I'm not swimming in it like I was before. I like the new me. I get more done around the house, I spend more time with Austin, and I'm finding new interests (like being a rockstar in my spare time -a lot of you will know what I'm talking about!)...

Once again though, I have to say...I miss the close contact I had with everyone on here. I thought of little Trevy on his birthday (a date that's permanently stamped into my mind because we are birthday buddies) and wondered how his mommy was handling this momentous milestone. I've had Bennett in my thoughts as well...curious how his new school has been for him. And precious Sophie. Her one year mark since the surgery is fast approaching. What a big girl she is! I've especially thought of Maddie and how she's done post-diet. And big girl sitter Madie...and the sweetheart Colby. All these kiddos have always been on my mind. But, I haven't had the courage to dive back into that. Scared I would get back into old habits of the seizure obsession and disorder comparisons...knowing the fears I've worked so hard to conquer would most likely creep back in to haunt me again. I just couldn't go back there just yet. Trying to keep a safe distance for my family's sake, because I know they prefer me to be here rather than seizure land. Not that checking up on our buddies is a bad thing. But, three of our buddies are seizure free now -which is WONDERFUL! But, that's where my fear comes in. I get scared of never getting there. Comparing and obsessing and despairing and pitying my situation. That was not working for me. I LOVE these kids. I love their parents. I love that they have had the chance to try and start over. I've just needed to live here in my own reality for a while and not compare Austin to other kids. And it has helped me celebrate the smaller things he accomplished so much more.

Anyway, on to business...We have seen Austin transform again since the Lamictal wean was complete. Blowing noises are back (he stopped a couple weeks into the start of the med and started back two days after coming off)! Interaction is considerably improved. Smiles, laughs, giggles, toy banging and functioning!! Lots of great new moments around here!

The diet is still going well. My mom and I have a "date" about every other Saturday where we make Austin dinners all day to freeze. It makes this SO much easier. Usually the only meal I will prepare on the spot is breakfast -the others are pre-made. She has been a tremendous help! She knows when I'm starting to wear down and always steps in and helps...whether it's helping prepare food, buying new contraptions to simplify my life (see pic below), or watching him for me for the night so I can relax a bit. I honestly couldn't handle any of this diet or disorder without her.

Last night was the best surprise ever...no noticeable seizures for at least 5 waking hours!! Yeah! And this morning started awesome as well with only 2 seizures in 3 hours.

We will continue to tweak the diet and medication to get even more improvement. My hope is for him to get off the last two meds sometime soon. We saw cognitive AND seizure improvement after the Lamictal wean. And thinking back, the best he's ever done (seizure wise and cognitively) was when he was on the least amount of AEDs. I'd like to see how the diet will work for him without the meds. There are sometimes more improvements in kids once all meds are removed. It's a goal anyway.

So, that's where we are. Finally moving in the right direction!

Austin's new "no helmet zone".

The long haul

2010-03-27T11:12:00.003-05:00

Okay, so my imagination was bigger than my common sense. I had big plans of keeping in touch, updating on our progress throughout the diet, etc. Obviously, I underestimated the time this would require. Still totally worth it though!

We continue to see improvements. Not as steady or as huge as I anticipated, but they're there nonetheless. That's good enough for me to settle into this for the long haul.

The thing I really really love about this diet...That there are SO many variables. So if something's not working, there are many areas to explore and tweak. It can certainly get overwhelming at times as far as knowing where to look for problems...but it's not like a med where you try it and that's that. Triggers for seizures can be in the food, meds, fluids, calories, timing, meal spacing, ratio...I could go on and on. So, for me, I feel like there's always a light at the end of the tunnel.

What I hate...the portion sizes and the redundancy. I'm not completely sure where Austin ranked in the appetite department compared to other kids his age before the diet, but these amounts are definitely not what he's used to. He always seems hungry, even after our efforts to address this. He cries when meals are over or when he knows it's getting time to eat. It's hard denying food to him when I know that's what he wants. Even fluids are restricted. And I hate that we have to cycle through the same boring meals over and over. We don't have access to the nifty KetoCalculator yet, so I'm stuck with our dietitian's handful of meals. I've found a few recipes online that I've asked her to calculate for us, but that becomes a pain. Wish I could do it myself.

There are trade offs for sure. I would gladly trade in my free time to prepare his meals for even a little seizure control. Good days are down to the 50ish range. Bad ones...about 100. I remember when the good days were at least 100. I have to remind myself of that every time he has a bad day. The spontaneous full body drops are gone. There's been only one incident since we started the diet and that's even questionable, since I didn't see him fall. He tends to trip a lot as his balance has never been on the stable side. The head rocking has almost completely subsided. I'm not sure if I ever got into this in detail on here, but he would have these moments that he would fixate on an object in his hand or his hands and rock his head from side to side -states we couldn't snap him out of. They were always associated with seizures in the beginning, but it became so frequent that nearly every time he was still he would do it. It's very rare for him to do it now, and if he does, it's very brief.

We decided to wean him off Lamictal. What a terrible med for him. It did nothing but produce side effects and possibly more seizures. Only two more weeks to go on the wean. Yeah!!

So, we are very pleased with the results so far. We didn't get to bring him home from the hospital seizure free, but we did bring home tons of hope for it in the future.

We'll most likely be sticking with it for a while.

Where to start...

2010-02-19T12:19:00.002-06:00

This new, rigid schedule has me spinning...

We still see some improvement, although some days are better than others. I'm back to my ridiculous counting habits trying to spot trends in improvement and decline. Nothing to bank on yet...I see great hours that leave me excited and filled with optimism, only to see the tally marks fill the page the next hour.

Still, even with these horrific hours, the grand total for the day consistently stays under 150 (worst day so far 149 -the day he was extremely acidodic...the best 61). On average he will have around 80-90. Not great. But better.

There are questions regarding, well, just about everything. From the food ingredients to his lotion. What is keto-friendly what is not? I had no idea that something as simple as chapstick or toothpaste could throw him out of ketosis or cause increased seizure activity.

So because of this, every issue seems to be magnified...like his irregularity (fun times). Even more so when no one seems to be available to answer these questions for me. Who would have thought that upon getting released from the hospital (before a holiday weekend nonetheless), that his epi would be going on vacation or that the doctor over the diet would be out sick for an entire week! Of course, the dietician can only tell me what's safe for the diet -not what to give him or how much.

I'm pretty much bound to the house (and practically the kitchen) at least until this lifestyle becomes a bit more familiar. There are ALWAYS dishes in the sink since every meal requires nearly a cabinet full of cups and bowls for measuring, cooking, serving, etc. But, all of this I will gladly do as long as it seems to be helping. Seizure freedom is the goal...but even relief is welcomed right now.

It's exhausting. But, not nearly as exhausting as seeing forceful drops and falls every 10 minutes -which is where we were. He was clustering or dropping literally every time I turned around. That was much more stressful than checking for ketones, weighing food, cooking, and adding up fluids.

Even though my having to keep such a watchful eye for seizures and all the new added responsibilities seems to be more than I can handle at times (if you only knew the state of my laundry pile up!), seeing him go two hours without a seizure is more than worth it.

Finally...

2010-02-16T16:28:00.003-06:00

...something that seems to be at least helping the seizures.

They are still very much here, and very much a part of everyday...but they are better.

There was some improvement before we even left the hospital (I didn't want to get ahead of myself and post it though), and at least 50% or more reduction until Sunday. Sunday and Monday were a bit higher, but today is much better. I've only seen 34 so far (before the diet, he'd already had over a hundred by this time).

It's still way too early to make any assumptions about how well it's going to work for Austin, but it's looking very promising at least right now. I've never seen such consistent results from any treatment since he began having seizures almost two years ago. Even though he's been topping out between 60-100 (average) a day this past week, and this would have been extremely high for him a year ago, it's quite an improvement. They had been steadily increasing since August, and by Christmas, I would estimate he was having somewhere in the range of 200-300 a day. So, 34 at 4:30 pm is wonderful for him right now.

Like I said though...still too early to draw any conclusions...but he's doing very well right now. His energy level is still quite low, but there seems to be improvement there each day as well.

I'm just going to take this one day at a time and see what happens. Hopefully, we will continue to see more and more improvement...

keto is underway

2010-02-12T11:37:00.005-06:00

I thought I'd let everyone know that we have initiated the ketogenic diet and arrived home from the hospital. All is well so far.

As with any hospital stay, we were stressed out of our minds. I read up on the keto diet before going, but there were still many surprising twists and turns. For one, Austin became extremely acidotic immediately. Our clinic does not require a long fasting period, but Austin was an exception since he had to fast for sedation for the MRI and LP. He started getting moderate ketones within 6 hours of starting the diet and large ketones soon after that. The next morning he (and his bedding) were covered with the previous night's dinner...yuck!

But, with meds, we've been able to keep the acidosis under control and everything else is looking good. He seems pretty disappointed with the quantity of meals (he's quite a hefty eater), and the fact that water is his main source of fluid...but other than that, he's adjusting well. A little weak and sluggish, but that was to be expected as well.

A few things I've noticed about myself and dealing with the ketogenic diet...

#1 -I MUST be organized!!! To keep this from consuming me & my entire day, I've found that the more organized, the better.

#2 -I MUST stay positive!! If this is going to be our new way of life for the next few months (or even years), I'm going to have to accept the changes and make the best of it.

#3 -Creativity is important! Some of the ingredients alone are enough to make anyone want to gag, so incorporating them in different, exciting ways is going to be the key to getting that heavy cream and canola oil down the hatch! :)

#4 -I've gotta keep the faith! Probably the most important because with it, all the others will fall into place much more easily. Austin's miracle treatment is out there, and I must treat this like this is it. Otherwise, I may not have the motivation to stay organized, or the energy to stay positive, or the patience to get creative.

I must applaud every parent who has taken on this diet and stuck with it. It's much more involved than I ever imagined...and I expected it to be difficult and tedious.

So...that's our latest.

In case you were wondering...

2010-01-28T15:14:00.002-06:00

Yes, we're still here.

I've been SO out of touch with just about everyone these days. I've got a boatload of reasons, but I'll spare you...

The main reason...there just hasn't been much to report. Seizures have been extremely high (& extremely intense) so my eyes stay on Austin all day (sometimes all night) everyday. In my spare time I completely shut down and focus on doing anything I can to distract myself from thinking about seizures. So, there's the condensed version.

I'm updating because I actually have something new. We had a 23-hr EMU study done at TCH last week (that's an EEG for anyone who doesn't already know). Still no hypps, but still no focus either. Still generalized...blah, blah, blah. It didn't give us much to go on in the way of treatment options.

So...after much discussion, debate, and procrastination, we've decided to go ahead with the ketogenic diet. We check in Sunday, Feb. 7 and will be there until that Wednesday or Thursday. While we're there, we'll most likely get a repeat MRI scan and lumbar puncture.

I'm sorry I haven't been better at keeping in touch with everyone. I've seriously needed a break from this though. It all just became too much to handle -and I'm still working on it.

I'll try to check back in soon...

The Good News

2009-11-13T13:00:00.003-06:00

I guess I wouldn't blame you if you've forgotten about us. There have been very few reminders on my part to keep you up to speed. But, I guess if you're reading, we haven't been completely forgotten, huh? :)

You know how it goes, after such a long lapse it's hard to recap the entire series of events, but I'll do my best.

The past few weeks have had me either completely away from the computer or just plain too tired to sit and focus on it. It's been my last priority I guess I could say.

My old blogging used to serve as my own personal (and free of charge) therapy, but I'm just not thriving on it like before. I'd like to keep friends and family in the loop, but it's doubtful that I'll be releasing much of that old emotion for a while. Just not feelin' it anymore. I have been popping in occasionally to my favorite blogs but haven't quite had the concentration or energy to compose a comment.

So...for the updates.

We've started a new med, Lamictal. Slow intro on this one. Going up by 5mg twice a day each week. I believe we're at Week 4 and have two more to go until we reach the recommended treatable dose of 30mg twice daily.

We had a visit with the epilepsy specialist on 10/30. Besides my being dog tired and sick that day and him telling us that Austin will most likely die without immunizations, it was routine. Could have had this appointment over the phone. No labs, no eeg, no new meds to discuss (since we'd already started Lamictal two weeks prior)...just a "keep with the plan" and "see ya in three months". Oh, and the "you need to get Austin's immunizations up to date or he'll die". That I wasn't really fond of. I'm not a moron. I think I know the vaccs are important. But, the rock and the hard place saying pops into mind. Enough said.

I actually made an appointment with the pedi for a "revised catch up vaccs schedule", but I ended up being a no-show and rescheduled. He wants to give him the MMR and Varicella to start. I've got until the 20th to either get them or back out again. We'll see. No easy decision.

On the seizure front...not much to report there. Same ol' I guess. Although we are seeing some variations of his typical presentations. Instead of a quick head drop sometimes, he freezes with his head down and eyes locked in place...sometimes arms frozen in extension. This is new. About three weeks new. He doesn't have many of those in comparison to the more common drops and clusters though. Oh, and I've been seeing some head/arm jerks to the right. Also new.

Development has it's ups and downs. Progress here, regression there. Changes from week to week really. Eating suffered for a while, now it's number one in terms of progress. Now, play interest is low. Oral up one week...down this week. Never know with this kiddo.

I guess the most noteworthy piece to mention has been my continued focus on Christian Healings & Miracles. That's where my attention has been lately. Reading, studying, practicing, and last weekend attending a seminar in DFW area (about a 5-6 hr drive from here). I have books, cds, dvds, cards, prayer cloths, you name it. I've got it. And I've poured every ounce of myself into these. And have been just trying to spend some time with Austin minus the distraction of what's going on in cyberspace. Trying to keep the positives rolling.

It's probably the main reason for my hiatus. But certainly not the only. In the past three weeks, we've had birthdays (2), well checks, an epi visit in Houston, a touch of sickness, a highly anticipated trip to Dallas...and a death of a beloved family member, Chad's grandfather, Cowboy. So, to say we've had our hands full is an understatement.

I so wanted him to hang around until I got equipped with the knowledge and understanding of this healing thing. I'm still learning. After countless hours of prayer & reading & listening, and a six hour seminar, it's still a work in progress. It's actually a very simple concept, however, it can get tricky and complex to anyone raised under different teachings. It's certainly not alternative...I don't want anyone to get the wrong idea here. It's just not what I was taught in church. It's not twisted interpretations or radical thinking. It's just taking the Gospels and bringing them to life...here...today. It's been quite the task of unlearning a lot of previous beliefs. One being that a miraculous healing is like winning the lottery. That some people will just get lucky. That's so not supposed to be the case. It should be flowing just as frequently and should be just as accepted as someone getting saved.

And I'm not going to force this on all my readers (if I have any left lol). I'm just simply bringing it out in the open where anyone who may be interested can learn what I have. Any many will not want to. And that's cool. Religious views cannot be forced. Some of you will not accept this until you either a) see it or b) seek it.

This blog was created (in the beginning -before the true reality hit and my emotions took over) to serve as a central place for everything Austin. Austin's progress with IS, development, etc. I'm reverting (from my soap box) and holding to that from now on. I just wanted to give you an idea on where I am in the scheme of things and let you know that I am happy to share if you want to learn more. Freely I have received, freely I will give. Just drop me an email ( chadburnett@att.net ). I'm tellin' ya, it's totally worth a look.

Heb 11:1

two

2009-10-26T11:23:00.006-05:00

Well, the big day came and went. He's officially two as of Sunday. Two. Can't believe it, I really can't. This year has completely flown by. Yet, each day seems to drag on and blur into the next. Weird.

Honestly, the anticipation was much greater than the satisfaction it produced. Austin was not in the best of moods. At all. We had increased his Zonegran the night before the party, so he was groggy and over stimulated by the commotion. Not that we even had many people here. We chose to do a small, intimate celebration with just close family. Last year, having about 30 people cramped in my not so big house was a challenge. Visiting with friends and family I hadn't seen in a while, coupled with making sure everything ran smoothly, and not to mention the cranky birthday boy who had refused to take a nap prior...I think I was over stimulated! Anyway, small and toned down was the goal this year. I wanted to spend more time with Austin without worrying about making sure the chip bowl was full and that everyone had something to drink. It would have been perfect had Austin been a bit more alert. The seizures on Friday were horrendous which prompted me to make that tough decision. I had to choose between the seizures or alertness. The seizures won.

I don't think I got a single photo with a smile. But, that's okay. Next year will be better. I know it.

He didn't scream through "Happy Birthday" this year. That was a plus. I don't even think he got cranky at all. Another plus. But, he wasn't himself. He tends to keep inside his shell with people around...and then there's the increased med on top of that. After everyone left, he did perk up a lot. Playing with all his new goodies and running around his play room.

Sunday was his actual birthday. I wanted that day to be just the three of us (four if you count our dogger, Bailey:) We spent it playing with new birthday toys and relaxing with the birthday boy. Seizures were much better which kept the emotions in check. I wasn't sure how I would be in that department, which is why I chose to do his birthday party the day before. So that if I did have a meltdown, I wouldn't be raining on his party.

Another difference from last year. He was able to actually feed himself the cake rather than just smash it in between his fingers. What a sight! The boy was picking up half of it and cramming it in his mouth! Definitely dug it this time around. I think we had to dip his paci in the icing last year to calm his screaming. It worked. But, he wasn't even close to eating anything that wasn't pureed, so that was the extent of it.

So, all in all, it went well. Not as grand as I was imagining, but special and memorable nonetheless. He'll only turn two once and we did everything in our power to embrace and capture it.

60 Minutes, CURE, and epilepsy

2009-10-16T12:40:00.003-05:00

This post was taken from a fellow IS parent/blogger. I'm only copying and pasting from the letter he received from CURE. You can read his entire post here.

We have some great news to share--on Sunday, October 25, 60 Minutes will feature an in-depth examination with Katie Couric of the problems and challenges of epilepsy. The segment will feature CURE and CURE founder, Susan Axelrod and her family.

CURE supporters around the country will be gathering at "viewing parties" for this program and we hope you'll join them by settling in front of your TV to watch. (If you'd like to host your own party, please call 800.765.7118.)

This is yet one more opportunity for all of us to raise awareness in this amazing year for epilepsy! Beginning with PARADE Magazine in February, we've enjoyed tremendous exposure in Newsweek and on CNN, MSNBC, the TODAY Show and Oprah's Dr. Oz radio show.

It's clear that momentum is on our side...this is our time to change the playing field and finally begin to make the difference we've been waiting for, for far too long.

Please help spread the word about 60 Minutes and make sure the voices of the over three million Americans suffering from epilepsy are heard loud and clear.

Warm Regards,

Michelle

I'll be watching. Hope you will be too.

this

2009-10-14T11:10:00.005-05:00

This is what keeps me pushing through. Because beneath the medication, I sometimes see this side of him. And it reminds me that this is the way he should be.

By the way, I cannot figure out why all my photos are coming out orange-ish. There's no telling what I've done to my camera!

seizures and all

2009-10-12T10:51:00.004-05:00

I will be so glad when this blog is less focused on seizures and developmental delay talk, and more focused on developmental strides...but, until then...

The usual updates...

We are OFF Felbatol. Finally. I was hoping to see more of the real Austin peeking back out by now, but not quite yet. The upside has definitely been the reduction of those nasty side effects. He's eating MUCH better again, sleeping pretty well, and even "going" more.

Still waiting on that playful side with the laughter and curiosity to increase. He IS better, but not where he was pre-Felbatol.

I'm just praying it's still effects from the med rather than the hyps being back. I don't typically want to have EEGs at our epi visits, but this time is different. We have an appointment on the 30th but no EEG. It would be nice to know for sure. It's a strong possibility that it is back, seeing as the clusters are still going strong.

The last time I mentioned his seizures, I talked about a 70% reduction. They've picked back up again since then, but it hasn't deterred my faith. I'm still holding on to the prospect of seizure freedom. Med or no med, surgery or no surgery. It WILL happen.

So, I thought I would avoid this, but it feels weird just writing in standard update mode. I haven't gotten into anything more than just daily happenings and so forth. Problem is, I used to write about how horrible this felt and my struggles to live it and accept it. It was my passion. Trying to cope. I would pour my anger and my broken heart out here in hopes of gaining new prospective or just needing a release from the collection of emotions. But, now that I have reached this new path, I've left that behind. Now, I'm left with the struggle to write about something I cannot explain. I can't. So, for now, until I can explain this new passion, I will most likely keep to the standard updates. That also explains my lack of regular posting, by the way.

But, I will say, seizures and all...We are doing better than ever. Weird, huh? :)

Had to share this...

Someone fell asleep in the high chair yesterday! Craziest thing, he feel asleep mid-chew! One minute he's chomping away, the next...out like a light! He was tired and hungry...guess what won? :)

This one's for Trevy

2009-10-05T10:55:00.005-05:00

I read a little more than a handful of blogs. All by people I've connected with throughout this journey with Austin. Most of you understand this connection.

It starts by a common ground. Seizures. Monster seizures. Infantile spasm seizures. An automatic bond forms. Because we all truly know. We get it. But, sometimes that bond continues to strengthen. We see each other through mad seizure days. We celebrate new skills and triumphs. We give advice and compare notes. And console each other and try to give a boost when living with seizures seems unbearable. It's all of these things that keep us connected.

I've been following this one, Dear Trevor, for about a year now. I could give you a background story, but his mommy tells it much better than I ever could. Through her writing you can actually see her heart.

And right now...my heart is exploding for them. Trevy (as she likes to call him) is in Detroit as I type. He had a PET scan today. For his brain surgery this week.

Tomorrow it starts. The grid placement. An invasive and more precise way to monitor the seizure activity. Then on Friday, October 9th, the resection begins. A subtotal hemispherectomy. Which we pray will leave this little boy seizure free!

Please remember this family this week. Say a prayer (or a hundred) for them.

Sabril/vigabatrin

2009-10-02T14:54:00.003-05:00

Saw the link to this Forbes article in the IS forum. Interesting read about how the only infantile spasm approved drug made it's way to FDA approval.

A Long And Deadly Wait
Matthew Herper, 09.30.09, 06:00 AM EDT
Sabril could help babies with brain-destroying seizures. So why did it take so long to approve?

Timothy Zirkel will never forget the seizures that assaulted his 4-month-old son, Jake. "You could see the pain in his body as it happened," says Zirkel. "I just remember always wanting to trade places with him."

Every seizure was damaging Jake's brain. Infantile spasms, a rare form of epilepsy, strike 2,500 babies in the U.S. every year. Unless the seizures are stopped early, permanent neurological problems result. These children may never walk or talk. Some have IQs of less than 50.

After a first treatment failed, Jake was helped by an experimental medicine called Sabril that carried the risk of destroying his peripheral vision.

It was "a no brainer" to take the chance, says Zirkel. "Within the first day of taking it, his seizures stopped and they have never come back." That was in 2005.

The drug had languished since 1998 when its original maker abandoned it because of the vision side effects. A tiny biotech, Ovation Pharmaceuticals, picked it up in 2003, and fought for six years to get it approved. Its path to patients was the longest of any medicine on record--14 years.

Sabril warrants close attention because it's a clear near-miss for the drug approval system, a case where a medicine with a clear benefit for desperate patients foundered. It's pretty clear that new conflict of interest rules and policies about drug safety contributed to the delay. A small potential market--sales are expected to peak at $300 million--also played a role.

Unlike the controversy over, say, the Dendreon cancer treatment Provenge, there have been few protests and little noise made about the delay. Even now, Ovation's parent company, Lundbeck, will probably make more from selling Sabril to adult epileptics than to babies. Figuring out how to help small groups of people who desperately need a drug without exposing the population at large to necessary risks may be the biggest challenge facing the FDA.

In 1994, Marion Merrill Dow, now part of Sanofi-Aventis ( SNY - news - people ), filed a new drug application for the drug as a treatment for all kinds of epilepsy. In November 1997, the FDA asked for more information about the drug's efficacy. A month later, the first reports emerged that patients in Europe were losing their peripheral vision. Forty percent of the patients who take Sabril have this side effect. In October 1998, the FDA rejected the drug.

That would have been that had it not been for Donald Shields, director of the pediatric epilepsy program at UCLA. In 1996, Shields and his colleague Roy Elterman had started a study of Sabril in infantile spasms. Even after the company backed out, they kept enrolling babies in the study until their supply of the medicine expired, eventually enrolling 200.

They published their results in the journal Neurology in 2001. Patients who were given a high dose of Sabril were three times more likely to have their seizures stop than those who received a low dose. (Because the patients needed treatment, all got at least a low dose of the drug.)

"It's the kind of drug we have to have," says Shields. "It's got its problems, but for the kind of patients we're talking about, it is a godsend."

At a meeting of the Child Neurology Society in Vancouver, Shields saw a booth for a new start-up, Ovation Pharmaceuticals, which was seeking new products. He sold them on Sabril. The FDA had never closed the file on the drug, and in December 2007, Shields' data formed the basis of a new drug application for infantile spasms.

The FDA gave the drug "priority review," which means a decision was due in six months. But from the outset, the agency said it would need extra time to convene a panel of experts to weigh Sabril's merits. Experts in infantile spasms were few and far between.

Then new regulations slowed things down even more. The FDA was facing enormous pressure following controversies like the withdrawal of Merck's ( MRK - news - people ) painkiller Vioxx, linked to heart attacks, and alleged overuse of anti-psychotic drugs like Zyprexa from Eli Lilly ( LLY - news - people ) and Seroquel from AstraZeneca ( AZN - news - people ). New conflict of interest rules led it to cancel a July 2008 panel for Sabril because one key expert no longer qualified.

The FDA finally convened its panel in January 2009, and the panelists voted unanimously that Sabril should be approved both for babies with infantile spasms and for adults who had run out of options. In February, Lundbeck, a Danish drug maker, bought Ovation for $900 million. The press release announcing the deal trumpeted that Sabril was in the final stages of FDA review.

But Sabril needed a Risk Evaluation and Mitigation System (REMS), FDA jargon for a plan that ensures drugs are only used when benefits outweigh risks. One division was uncomfortable with the measurements on the dosing syringe in which the drug was given, and even after the review seemed close to done, a team of lawyers had to go over it. Sabril was finally approved in August.

Shields "whooped" when the approval came through. On the length of the delay, he says only, "The FDA and I have very different jobs."

"I would rather have a blind child who is not suffering neurological damage than the reverse," says Tim Zirkel. He asks himself how many kids have suffered as the drug made its way to the market. Kids whose seizures are stopped early enough are normal developmentally. Jake Zirkel is not quite that lucky. He walks and says a few words, but doesn't talk as much as a normal 4-year-old.

"My son is the most amazing child," Zirkel says. "He is my biggest hero. He has gone through more in the past four years than I ever will."

Welcome to October

2009-10-01T11:40:00.005-05:00

Looks like October will prove to be a big month for us.

We will celebrate Austin's second birthday...And, I'm thinking...we might just get our first Halloween costume too. You'd think it was a given. With Austin's birthday falling to close to Halloween, that he would have already been dressed up. I've never been big on Halloween -haven't donned a costume myself since the 8th grade (not saying how long in years that's been! lol). I soooo did not want him to be the Halloween baby. That's why I gladly took an induction date of the 25th rather than risk letting him arrive on the 31st. Silly, I know. Anyway, I've gotten him some themed clothes the last two years, but never a costume.

My rambling just got me little off track. So, October, right?

We're not the only ones having an eventful month. This month will also be extremely significant for our friend, Trevor, too. He's leaving tomorrow for Detroit in hopes of brain surgery being his chance at seizure freedom. Of course, this little one will get his very own post soon. I've grown too attached to him and his family to cram this in with a typical update!

Anyway, I'll close with a bit of encouragement in Austin news...

Two weeks ago (yeah, a tad bit late on this), Austin starting semi-spoon feeding himself! This photo was taken during that very meal (I didn't realize how dark it was until I uploaded it -my photo editing program won't let me edit!). I have a video too, but I was hooping and hollering like a loon in the background -thought I better not add that one! This is significant progress for him. Unfortunately, very soon after, his appetite started diminishing & he started refusing to take bites -much less do it himself. It's finally starting to improve a bit, so we'll get back to the spoon ASAP! By the way, when I say semi, I mean that he will do it after I put the food on the spoon and lay it down. He's not quite scooping yet. He'll get there though. No doubt about it. He's already surpassed so many expectations!

Gonna get there soon

2009-09-29T09:20:00.003-05:00

First with the updates. Then with the story.

We have reached the Felbatol end. A two week wean. Thank goodness! I have neglected to mention all the different aspects this one has affected.

Appetite.
Mood.
Sleep.
Interaction.
And most dramatic effect. Regularity. Yep, this boy has had SO much trouble "going".

His seizure presentation has changed as well, but I'm doubting it is the med. It may just be that they are evolving and changing. More on that later.

We have decided against taking him off Zonegran since that has been the only questionable one as far as improvement goes. No, it's not making him seizure free and never has. But, if it improves them, I'll take that for now. I will not allow him to reach his previous dose of 300mg a day. We just increased it to 100mg a day from 50mg. I don't see the need in maxing it out as he was just on this dose and there was no difference between it and 100mg. The side effects were the only visible difference.

We are discussing the addition of Lamictal in the near future. After the Felbatol wean of course. No more big changes at once.

And, I'm glad to report that Sunday, we saw a 70% reduction in seizures.

Now with the story...

Several weeks ago a series of events led me to a renewed faith. I will get into the details another time, but I am different. I am peaceful. Hopeful. And excited.

Yes, I received a particularly tough blow last week with the EEG/surgery news. But, oddly enough, I'm okay.

Since Friday, I have not been angry. Or bitter. Or hopeless. Again, oddly, since I received that "tough blow" on Thursday. And this was before the reduction in seizures.

I'm no longer praying for acceptance of this disorder and of seizures.

I'm now praying for a Healing. And I've never been more accepting of this situation.

I've never in my life seen so many seemingly unrelated events point to one particular thing.

I'm not letting go of this.

And over the weekend, Saturday to be exact, a close friend of my parents came over in honor of Austin and our faith that he will be healed. He laid hands on him and prayed.

Sunday was the day of the 70% reduction in seizures.

It may not be immediate. It may not stop all at once. But, it will eventually. I have peace in that.

I've spent many months praying for surgery. Or that this or that med will be the one. I've prayed for acceptance if this is to be our life. But, not once did I truly, whole-heartedly believe he could be healed without that.

But, I do now.

The Hunt

2009-09-24T11:33:00.004-05:00

I originally planned a lengthy update for today. The first day time and errands would allow.

I also have a few choice comments on the Questcor issues as well. But that will have to wait.

Between the internet and Austin mood and seizure interruptions, I have been quietly dealing with another issue.

Surgery.

There are very few people I've mentioned this to, simply because I was afraid of the response I would get in the end. I had to hide my vulnerability to this subject.

It took over a month. I emailed Dr. Chugani about Austin's most recent hyps-free EEG (he told me during our visit in March to let him know if there are any changes with his EEGs -notably the hypsarrythmia).

I had the EEG report sent in early August. It took our local hospital exactly one month to fax a paper copy of the report.

During the spotty internet service, I was a wreck knowing that Detroit had received the report and I could not get into my email inbox.

This morning I had this email waiting for me...

Hi; the EEG does not really show any lateralization to either side, but remains diffuse all over the brain. I don't think I can make a case for surgery. However, as Austin evolves out of the spasms into some other seizure types, there are other meds that can be used. Just because a particular med did not work for spasms does not mean it would not work for other seizure types. So keep your hopes up! Are we having lots of seizures now? HC

I felt my heart shatter. We are nearing our Felbatol end (I hope). It is our eighth AED. EIGHTH. Somehow our parting in Detroit in March left me with slivers of hope. He explained how unclear the evidence was (particularly because of the EEG loaded with hyps), but that doors could be opened in a matter of months -when the hyps clear. Which they have. Which did not even open the door a smidgen. Instead it slammed in my face.

I did respond to that email. Told him about the seizures and the behavior that accompanies them. And asked the very stupid question that I already knew, but had to get confirmation from the guru himself. Should we give up on the possibility of surgery in the future?

A very simple and matter of fact I would not pursue surgery. HC was his response.

So there it is. My secret hopes of new developments making a difference rejected.

My heart is torn in different directions. I don't want surgery to be the answer. I don't. I don't want an AED with unreasonable side effects to be it either. I want the Miracle. The Healing. So, in that respect I'm okay. But, the logistical side is crushed. It sees nothing more than the bottom of the barrel.

This struggle comes at a particularly bad time too. Austin's clusters and seizure-related behaviors are at an all time high. Saving the details for later, I will only say that I was desperately yearning for a new option -or even a new hope for a new option this week.

It's not over. Sadly, the surgery hunt is (for a while until something new suggests otherwise in the future), but the miracle hunt is just beginning.

Alive and well

2009-09-21T14:29:00.000-05:00

I just wanted to let everyone know that we're okay, and unfortunately not on vacation...I haven't been not blogging by choice. I've been battling an insane internet service provider and their errors and ignorance! Internet has been down, and instead of choosing the passive aggressive route to get it reconnected, I probed and pestered until they had no choice but to fix their mistake (yay me!). They should be on speed dial by now as many phone calls as I've put in. :)

Recapping will be quite the chore...I'm still thinking on how I will update in a somewhat organized manner. Undoubtedly I will leave a lot out. But, I'll get to it soon! Promise.

people pleaser (unfiltered)

2009-09-04T12:27:00.009-05:00

I've noticed that my attitude needs some serious adjustment. My words have been twisted by sarcasm and pessimism lately. I'm sorry.

I know, I know, I'm entitled to vent occasionally. And be angry and cry sometimes even. But, seriously, my blog has definitely been reeking of negativity that just leaves me wanting to wash this bad taste out of my mouth.

I've spent more time than not being bitter over the past couple weeks. Not healthy. And certainly not helpful. To me or anyone else that may be reading.

I complain about the doctors and nurses that get snippy with me. But, I'm not snipping back the way I should. To them. I'm snippy behind the scenes. Yes, they deserve a good verbal lashing from time to time. But, I keep writing them off as jerks and go on to bitch and moan here. No one reading here to check in on Austin wants to listen to my soap box every single time I have a confrontation with a health care provider!

I'm honestly ashamed of how much energy I've wasted on negativity. All it does it interfere with the positive energy I should be directing at Austin.

So, take this as an attempt to clean up my act and prioritize my concerns. Which are undoubtedly Austin, his seizures, and our determination to keep fighting for him.

One last thing though...before I completely try wash myself clean of the sarcasm. I feel the urge to go out of Negativeville with a bang.

The last few convos I've had with our providers has stirred up some issues that I need to address. I'm not the quick-talking, assertive type I aspire to be. I rarely say exactly what's on my mind (even if it actually comes to me before the end of the conversation) out of fear of hurt feelings, drama, or me looking callous or ignorant. I'm a people pleaser and it's obviously damaging to my inner strength. But I'm gonna get it out now!!!!!! Yep, I'm hiding behind my blog.

Here are some (possibly taboo) scenarios I've encountered along this journey and my delayed responses...

Warning...the people pleaser in me will be in OFF mode.

My simple requests:

For the clueless parent that feels so inclined to rub salt in my wound with his/her child's brilliance:

I hope that someday I will have accepted this life and be content with it. I hope that someday I will not care how others perceive my life or my son’s. Right now, though, the pain is still very fresh. I am emotionally fragile to the outside world of bystanders peering through the windows of my world. Same goes for me peering in to see your world. I am happy for you and your beautiful, healthy, typical family. I am. But, please know that I may not do the happy dance with you as you boast at how your little Bobby is progressing at the speed of lightening. Sorry, but it is crushingly painful for me. Because it is a reminder. There are always reminders. I’m just overly sensitive that way. Forgive me, but I was presented with that very dream only to see it ripped up and possibly tossed away. Respect that in my own time, I will come to grips with my reality and someday rejoice in your fulfilled life and genius babies. Right now, I’m still picking up my own pieces. I do not wish to play the martyr, but respect my situation, please.

For the gawkers that love to display their disapproval at my parenting skills:

Don't be so quick to pass judgment on me and the decisions I've made. Yes, my almost two year old still sucks a newborn Soothie paci. What's more he still takes a milk bottle too. I understand that this is a no-no and I'm not trying to deliberately baby my son forever. But, please keep in mind that there may be special circumstances. Not all of these babies still on bottles and pacis are spoiled. Some of them have been through more than kids their age should ever have to endure. If they are comforted in the slightest by their bottles and pacis, so be it. They shall have them. Others lack the developmental skills to drink from a cup or a straw. No more explanations needed.

For the grumpy parents who like to complain about their children annoying them:

Maybe you need a clue (see clueless parents), or maybe you do this as an attempt to downplay your life of normalcy to me. Don't. Complaining about how you'll snap if you hear the word, mama, one more time will not make me feel better that my son won't/can't say it. It's only makes me angry that you are not more grateful for your typical and chatty child. Say you're 100 lbs and I'm 400 lbs...Would you complain about your weight to me? Doubtful. Or if I had the flu and you had cancer...Would it baffle you as to why I would be complaining to you? Probably.

For the ones who remind me how much worse off we could be:

I'm fully aware of this. You don't have to remind me. I remind myself everyday. But, that doesn't make this situation any less painful. I do thank God that he doesn't have a fatal disease and that he can sit up and walk and see and hear. Yes, I am thankful. But, I still pray that he will someday wrap his arms around my neck and tell me he loves me.

For everyone who has minimized his disorder by saying he'll just one day grow out of it:

That would be a dream come true. But, have you noticed it has already taken it's toll? Maybe he will grow out of it. But, do you honestly think he will magically just catch up to speed overnight? Regain everything he's lost and fast forward to where he should be without any problem? Would that mean he is going through any less right now? Not later...NOW. Growing out of it doesn't take away the fact that he suffers from over 100 head dropping, sometimes body dropping, seizures a day NOW.

For those of you feel awkward around me and my son because he's not a typical toddler:

Don't. He's still a happy, energetic, lovable sweetheart! He may not participate in pat-a-cake or peek-a-boo with you. He may not laugh at a funny face or sound you make. But, he has his own personality and you are the one missing out if you don't see it. Or at least try to get to know him.

For those of you that always sweat the small stuff:

It’s really amazing, thinking back, at how shallow and superficial my life was before. I focused on having the perfect life and vowed to accept nothing less. My prayers consisted of selfish desires. The perfect dream house and that perfect job with top notch pay. Now, I'd just like to tackle that stack of medical bills. Perfect truly has a new meaning. Now it’s as simple as having a seizure free child that throws age appropriate temper tantrums that protests he will only eat cookies for dinner. Perfect means no neurologist visits, or spinal taps, or routine EEGs and MRIs. No seizure meds that reduce cognition and alertness. Perfect would be hearing MOMMY! to high heaven and finding Austin-height scribbles on my semi-freshly painted walls. Perfect would include toy trucks in the toilet next to a blushing toddler. What might have been a crisis before would suit me just fine now.

So, while I realize I may have surprised some of you, lost a little respect, or maybe even lost some readers, I needed to make these thoughts known. I'm learning that speaking my mind does not always include getting approval. The people pleaser is cringing right now and wanting to post a disclaimer so as to not offend anyone. But, the big mouth in me (that a lot of you know too well) is cheering!!!

Now...

Positive Holli from now on (unless a run in with you-know-who warrants otherwise)...

By the way...

For those of you have graciously and patiently listened to me and offered up comforting advice...or joined in and griped with me:

Thank you! I love you dearly! :)

Okay, so it's only been a few hours since I published this post. And...I caved to that nagging thought from the people pleaser. Request #1 is not sarcastic. I truly am happy for anyone and everyone who has a healthy, disorder-free child. I would never...ever...ever wish this on anyone. And I would never ever imply that my precious boy does make me over the moon happy. I cherish him down to the very last drop. I am just not content with what has happened to him.

It's now after 10:30 pm here. There goes that thought again. Nag. Nag. Nag. You know, the one where I was struggling with myself over whether or not to post a disclaimer? It won. Again. This is not directed at ANY of my readers (that I'm aware of). It's a bunch of randomness that I've encountered over the past year. It's doubtful that anyone who really should be reading it will. It's just all the things I wish I would have said when I had the chance. Like for the people that gave me the dreadful stares while I gave my overweight baby a bottle in the doctor's office (while he was a balloon on ACTH). I felt like I was being mentally name-called by some of the gawd-awful looks I got. LIke, you really could stand to cut back a little, lady.. Or, to the woman in the mall that said my son looked too old for a pacifier.

And, one more thing. I'm not offended by everyone who says that Austin will grow out of it. Some of you truly believe that. I wish I did too. Some of you know that regardless, this is still a serious disorder. But, I have honestly and truthfully had some people say, Oh, he'll grow out of it. Nine times out of ten they do. He'll be fine. Like they don't understand why it bothers me so much. I mean, it's not like he's having grand mals or anything. If they only knew. There's a reason infantile spasms are referred to as the catastrosphic epilepsy disorder. Just because they are small in appearance does not mean that they are affecting him any less than if he were thrashing about on the floor.

Okay, I'm developing a case of what Ken would call verbal diarrhea. Need to stop now.

to the point

2009-09-02T11:55:00.004-05:00

I've been mulling over some different subjects lately. Not sure how I want to approach them. So, until I do, I thought it better to post some sort of update rather than nothing. Even if it is generic and right to the point. Here goes.

We still see clusters. Decrease/Increase? Not sure. Some days are better...some not so much. One improvement is drop seizures. Whether they were atonics all along, who knows, but whatever they were/are, they are very seldom seen. I'd say confidently 90% of his seizures are infantile spasms and occurring in clusters. The other 10% are coming in singles, and the majority of the time it is VERY much like a spasm. A sharp jerk. Startle looking. Know-it-all nurse told me a couple weeks ago it sounded like atonics (because she said a drop is always an atonic) with generalized features. Honestly, our little conversations got my head spinning so much, I gave up on it for now. I know what I see. I've seen spasms for over a year now. These look very much like spasms. I'd like to think she is clueless to boost my confidence a little. But, then again, I'm not an epilepsy clinic nurse either. So I put it to rest with the notion that maybe more observation will tell. So far, I'm still thinking spasms.

Anyway, we reached our treatable dose on Felbatol (2mls 3x daily) last Tuesday. Today we increased to 2.5mls 3x daily. Still waiting to see where this one takes us.

To seizure freedom I hope!

Do you...

2009-08-26T10:30:00.006-05:00

Pray?

Or are you the fingers and toes crossing type? Doesn't matter, really. I know a little boy and his family that could use either or...

All my IS friends reading know exactly who I'm referring to...

One of THE cutest, most adorable kids on the IS block. Bennett.

He's scheduled for a temporal lobectomy tomorrow, Aug. 27th. And, it's not cut and dry. There's more to it than just a surgical resection. Not that a surgical resection is ever just a simple surgery. When you're talking matters of the brain...Nothing is simple. But, he has a unique case. And it's scary beyond description for his family.

Not only does little Bennett need our prayers and support...But his mommy and daddy, too. They need all the strength, encouragement, and comfort right now to be solid for their brave little guy.

So, if you could designate some fingers and toes for crossing...or remember him and his family while saying a prayer...

Every little bit helps!

Pardon me...

2009-08-23T09:57:00.004-05:00

I must be the crazy one!

I think the exhaustion is clouding my judgement.

Because if...IF I were in my right mind...

I would not have attempted a mall visit on the last weekend before school starts!

Not to mention TX tax free weekend at that!!

Can you imagine the craziness?!!

Even the toddler section at TCP was crawling with bargain hunters!

Much MUCH fun, I tell you. Much fun. But, leave it to procrastinator-me to wait until the day before our nephew's 1st birthday party to get a gift. I like getting clothes for 1st birthdays...it's like the last time you can get them clothes for an occasion without getting that sad look of disappointment!

Oh, and by the way...there is an upside to the Felbatol although you'd never know it by reading my previous post.

Between all the fits and nap protesting...I get to see this!

Sleep is for the weak...

2009-08-21T12:29:00.004-05:00

Whoever came up with that phrase had serious issues.

Some of you might have stumbled upon my desperate plea for help on the IS board. Some of you reading may have heard me on the phone. Or had the pleasure (not) of witnessing it firsthand.

THIS BOY IS CRAZY!!!!

Thank you, Felbatol. Thanks a ton.

No, really, I forgot what sleep deprivation was like. I needed a reminder.

All joking aside. This boy does not want to sleep anymore. I have no choice but to blame, you got it, Felbatol.

My trusty standbys and old sleep tactics were no match for Austin and Felbatol last night.

While Chad was waking at 4:30 am to start his day...

I had just ended my previous one.

I've long suspected that he was programmed with some type of sensor that alerts him when I'm drifting off to sleep. He can be as still as the night, but as soon as my eyelids start getting heavy and the groggy state sets in...the stirs and squeals begin.

Case in point...last night.

My poor little restless boy. I had one of those breaking moments around 2 am. That nasty anger brewing that results from a weary mommy on the brink of a meltdown. Not angry at Austin. No way. Sad for Austin. Angry at life in general. The kind of moment that reminds me of what we are living. A life where I am so desperate for seizure relief that I have subjected my baby to this hell. Felbatol.

A vivid reminder of the no nap/no sleep days of ACTH.

Counting down...Three and a half days until we reach our so-called treatable dose. Then maybe another week or two after that to know whether or not this could possibly be beneficial for Austin.

Something's gotta give here! Either these side effects must subside...or we've got...I mean GOT to find a remedy.

I did get a good suggestion (thanks, Elaine). It's called Neurontin. I read up on it. Not a technical sleep aid, but typically does the trick. It's got dozens of uses (most being off-label uses). It can be prescribed for anything from the treatment of seizures, to bipolar disorder, to treatment for withdrawal symptoms.

Of course, I don't want Austin on any more meds than necessary. So, I will keep up my sad attempt of getting him settled the old fashion way for now. For now being the key words here. Too many days of this can't be healthy for either of us.

Coasting on fumes here!

Hoping...hoping...that these are the type of side effects that disappear or lessen over time.

He's not just not sleeping. He's gets in a slightly agitated state. He's biting his fists with ferocity again. The callous that was finally improving is constantly red again and spotted with baby teeth marks. He's been moaning and crying at times. For those of you that really know Austin, you know he's always been a go with the flow, laid back kid -except, of course, those newborn days . For the past year or so, he's rarely been the type to cry without an obvious cause. Not so now. This is not the baby I've grown accustomed to. My days of swaddling and shushing and rocking have been gone for over a year now. All of my old previous tricks are being squashed now. DOA.

Maybe if he doesn't adjust to the meds...I'm hoping I will soon. Re-adjust to our new sleep schedule (or lack of). I lived through life with a newborn. Lived through ACTH. Vigabatrin. I just need a refresher I guess.

Too SWEET!!!

2009-08-19T18:06:00.004-05:00

Sweet is the word!

A basket full of yummy sweets came to my door at 5 pm.

Seems my dear sweet Mommy and sister thought it may cheer me up a bit after my insanely frantic day yesterday...

They were right!

Bless y'all!! Love you both!! And thanks a bunch! You know I'm a sucker for anything sweet!

tornadoes and seizures?

2009-08-19T11:02:00.006-05:00

Did any of you happen to watch The Weather Channel yesterday? Man...our neighbors in Beaumont had a little excitement. An F2 ( I think, might have been a strong F1) tornado blew through some of the largest retailers in town (right before the big TX tax free weekend for school shopping)...the mall, Wal Mart, and Kohls. I tell ya, if it's not a hurricane it's something else. They were determined to make the news again this summer! No one was seriously hurt though, thank goodness. Even the woman that was in her car when an SUV landed upside down on top it. Not injured, just a little in shock.

Completely unaware, and smack dab in the middle of fixing Austin's lunch, I got a call from my mom who'd heard that there was a funnel cloud just a few miles from MY house!! There's no type of weather I fear more than tornadoes. And our house...not exactly tornado ready. I ended up piling a mattress, pillows, Austin's helmet and my cell phone in the bathroom...you know..just in case! Can't you just see us all (me, Austin, and the Bailey) all camped out in the bathtub?!!

That certainly didn't come at the best time, although it's not like it was planned. Seizures were the priority of my day. Back up again. Way up from the weekend.

Without getting into too much detail, I concluded from the phone conversation with the epi nurse, that they think I'm a total nutcase. She said there was noooo way that the Felbatol could be causing the increase in seizures. According to them, it was too soon to see this type of effect. I asked her if it was a coincidence that they got dramatically worse the day after the increase...and if it was a coincidence that they got dramatically better the day after the decrease.

Oh, well, what would I know? I'm just his mother. The only person who sees him all day everyday. I guess she would know more since she sits here and counts seizures with me and knows everything about him and seizure meds for that matter. Her having her MD and all.

Not really. But, seriously, I still don't understand why I was under attack for adjusting his meds. I told them in a message something needed to be done. They didn't bother to call me. For four days. A five minute phone call was all it would have took. She pointed the finger at me for disrupting the increase schedule.

I could be wrong, but it seems like I might have mentioned wanting to avoid this type of confusion. It's exactly what I feared would happen if we went adjusting more than one med at a time. Guess my mommy's instinct should be obeyed from now on.

Anyway, thanks everyone for the support. I never feel comfortable adjusting his meds on my own, and to know that I'm not the only one who would have done that restores my confidence a bit.

Why no update?

2009-08-18T10:47:00.003-05:00

Because I have STILL yet to hear back from the epi. Believe it or not.

It's been more like a circus ring with clowns jumping through hoops than anything else.

Quite the disaster. There's no explaining it. No making sense of it. They are nuts. Plain and simple.

By Thursday's end, I was desperate for some sort of relief for Austin. Since no one else seemed to give a flip, I adjusted his Felbatol myself (after much debate and a heads up message to the epi clinic). We had just increased on Wednesday so I brought it back down to that dose of 1 ml. And, whatdaya know...he improved. I would never ever typically adjust his meds on my own. Buuut....since no one would return my frantic calls...and he had just been on that dose one day prior...I did it. And it's okay. Better even.

Sadly, I have still not received any further instructions. It would be so nice to be able to discuss this with our epi and feel like I'm getting genuine feedback. That has so not been the case. They are too busy for us. Too busy for Austin.

And that infuriates me to no end!!!

It's a shame. Really is. I've called over and over. My child was seizing like crazy. Now I'm stuck with a med that I suspect is worsening his seizures...and they won't CALL ME BACK!!!

***********************************************************************************

Update:

I finally received a call back from the epi clinic. According to the epi, the increase in seizures was most likely due to the decrease in zonisamide rather than the increase in Felbatol. After much discussion with the epi nurse, I agreed to restart the zonisamide (his last dose was Sunday night) and keep with the Felbatol increase until he reaches the treatable dose of 2 ml 3x daily. I'm hestitant, of course, because I am leary of the Felbatol. I have only seen negative effects since we started. However, we were adjusting the zonisamide at the same time. Time will tell I suppose. I have to try something. Maybe this will help determine which is responsible -if either. Like I've said many times before, Austin's seizures tend to go up and down regardless of med adjustments.

Lost it

2009-08-13T10:23:00.003-05:00

Where do I begin???

As if the anticipation and prep work weren't enough for this week (and the therapy in half an hour followed by a trip to the lab), I'm frazzled beyond words right now.

Last night I lost it. Lost my patience in med trialing/weaning, lost my cool exterior, lost my friggin' mind!!

After a loooong nap (which I would expect to see a few clusters), Austin proceeded to have nearly 8 clusters in a span of six hours. One right after another. Between 8 & 10 pm he had four. What gives?

What's more...that smiley, glowing boy is gradually fading again. Sometimes turning away from me and avoiding us. Walking around aimlessly. Falling again. Gnawing on his fist again. Irritated. Whiny.

Let me add even more to that. The real zinger.

I have absolutely NO clue what the heck is going on!!! Or even what kinds of seizures he's having for that matter!

I've been exploring the possibility that Austin may not even be having atonics. At least not right now. Long and confusing story...but, bottom line, he's jerking his arm up with the seizures I've always thought to be atonics. Atonics, by description of our epi, should not include a movement like this. It looks to me like a spasm (myoclonic). Maybe they were all along, just not with strong intensity?

I feel like we're back where we were exactly a year ago. Only with 100 more seizures a day. August 13, 2008. The last injection of ACTH. Exactly three months into this hell. Times were so confusing then, but slightly looking up and I swore I was seeing the light at the end of the previously pitch dark tunnel. The ACTH wean was finally over and Austin was having less than 20 seizures a day. On maybe 50mg of Zonegran (but with intentions of going up). Exactly what he's on now (with the intention of going down). Only now it's accompanied by two others -Felbatol and Klonopin. Those were the best seizure days he's had since this all began. And the seizures were not occurring in clusters. I was just starting to suspect that they were atonics. Today? I'm suspecting that they may not be. Ironic, isn't it?

I find it so incredibly strange that we are in this position today.

Plus, that old gut feeling is coming back to haunt me. The one I had when the discussion of adding Felbatol arose. Somehow I knew we would find ourselves questioning everything again.

And, here we are. Clueless. Was Zonegran really helping? Is Felbatol making it worse? Are the hyps back? Are we losing him to this Felbatol? The one that's supposed to be making our lives better?

I only hope I am able to form actual, complete & coherent sentences when we get our call back. At least enough to get my point across!

I'll try to update if I get the chance before we leave...providing I hear something back before then!

Time for some firsts

2009-08-11T14:28:00.006-05:00

We've made the trip up to the lake several times this summer...but always minus Austin. The summer heat has just been too much for him to handle with his previous dosages of zonisamide (one of the many side effects is decrease in sweat production and high risk of heat stroke). Until just recently, he could stay outside in our intense SE Texas sun for a maximum of 20 minutes at a time -maybe, providing he has a cool wash cloth, fans, and plenty of ice water. Our temps here are a bit much for the average person, much less a toddler who's on a med that can cause heat complications. Very little warnings to even know when he's getting overheated. No sweat and he's non-verbal. His skin would get warm to the touch and his little face would get flush. Other than that...no clue as to how he's tolerating the heat. Which is obviously dangerous.

But, fortunately, the baby sweat is picking up these days thanks to our steady decreasing of the med.

So...

To the lake we will go...with Austin in tow this time!

All the firsts this weekend has in store! His first trip to the lake, his first boat ride, the first full-size pool experience, first real getaway with the family (that doesn't include running from a hurricane or hospitals).

And talk about impeccable timing. The recent decrease in his meds mean an increase in his alertness. And curiosity. And interaction. And happy giggles not just seizure giggles (yes, he sometimes smiles and laughs between seizures -it's beyond me why he does this).

It happens to be coincidental that all this is occurring at the same time. We made reservations months ago...well before we knew of this med schedule.

So, I may not be blogging much, if any, until next week. The rest of this week is packed full with therapies, labs, chores, and of course the preparations for the big weekend. My only regret is that it's not all week! To get away from typical day to day life for a week would do us all justice!

Is it just me, or do you almost feel relaxed just by looking at these pictures?!

Oh, another first...the slide!

Med update

2009-08-10T10:26:00.003-05:00

Our first morning in over a year where zonisamide (Zonegran) wasn't a part of the medicine mix.
That was definitely different! I'm so used to the routine where the applesauce is always present with breakfast. No matter what he's having, it's always been accompanied by a side of applesauce -blueberry, strawberry, mixed berry, or any berry to spice it up...containing our old standby...zonisamide. This morning there was none. Just good ole Cinnamon Roll oatmeal -one of Austin's faves. It felt like I was forgetting something. I even reached for it when I opened the fridge out of habit.

We are one week away from completing the wean. Now, he'll only be receiving 50mg at night until next Monday. We're currently at 1ml of Felbatol three times daily & 0.25mg of clonazepam (Klonopin) twice daily.

There have certainly been some differences, but whether or not it's related to the wean, I don't know for sure. Like I've said before, multiple changes at once throw my judgement off. I see the changes, but I can't pinpoint the reason. The stopping of Depakote, the wean off zonisamide, the addition of Felbatol...and now the improved EEG. Who knows what's responsible for what. I hate that. I thought the medicine changes were spaced far enough apart to be able to clearly assess any notable differences -good or bad. NOT!

Never fails. There seems to always be questions surrounding any difference in Austin. I remember last year when the seizures drastically started increasing. First, I thought it was the late and short dosing of meds (Keppra and zonisamide) and the stress of our hurried hurricane evacuation. Then, we found out he had an eye and ear infection that week. That had to have been it. But, the seizures never decreased. After that, he contracted a bacterial infection from the antibiotics. That was it. Once that cleared up and the seizures didn't, I was clueless. I wanted to point my finger at something. Anything is better than the seizures increasing for no reason. And the idea of pinpointing the culprit (even if I don't know what it is yet), seems much easier than accepting that it's all out my control. If I even think there's a logical explanation, and it's just a matter of finding it, I have more peace of mind. Maybe that's not a rational thought process, but...what can I say? This is not an easy life. We all find have to find our own coping mechanisms. That's one of mine.

I got a little off topic there...sorry! My mind is bouncing all over the place...

Getting back on track, I've been seeing some great new skills trying to emerge. I've mentioned before that Austin figured out how to crawl over pillows and such. Now, he's trying to climb the walls...literally! Or the cabinets, or the sides of his play yard... I got him one of those stuffed fold-out couches last week, and I found him standing on top of it, facing the wall, with his little leg propped up as if he were Spiderman about to make his way up. If you know me, I freaked and ran over there thinking it was only a matter of time before he lost his balance and fell backward! He did. But, not quite fulfilling that elaborate mental picture of mine!

By the way, Step 2 is still going strong. No major boo-boos yet. The day after that post, he started having some spontaneous drop seizures again, which made me a little apprehensive about letting him go again. But, thankfully, he's been sitting again the majority of the time. And, if he doesn't, I can usually spot the changes in his mood which is my cue that something's coming. Crossing my fingers that this continues as long as the seizures do.

Article: Single gene mutation responsible for 'catastrophic epilepsy'

2009-08-05T11:39:00.004-05:00

A link to the following article was recently posted on my infantile spasms message board.

It's from Children's Neurobiological Solutions Foundation (cnsfoundation.org)

**side notes**

The university that conducted this study was Baylor College of Medicine. That's the same one affiliated with the hospital where Austin receives treatment, Texas Children's Hospital in Houston, TX. Austin has been checked for this gene mutation already, but it's an interesting read for me nonetheless. It gives a little more hope that there is research going on into his disorder...and treatments are being tested.

Single gene mutation responsible for 'catastrophic epilepsy'

July 8, 2009

Source: Baylor College of Medicine

Catastrophic epilepsy characterized by severe muscle spasms, persistent seizures, mental retardation and sometimes autism results from a mutation in a single gene, said Baylor College of Medicine researchers in a report that appears in the current issue of the Journal of Neuroscience.

The BCM department of neurology team replicated the defect in mice, developing a mouse model of the disease that could help researchers figure out effective treatments for and new approaches to curing the disease, said Dr. Jeffrey Noebels, professor of neurology, neuroscience and molecular and human genetics at BCM and director of the Blue Bird Circle Developmental Neurogenetics Laboratory at BCM, where the research was performed.

"While many genes underlying various forms of childhood epilepsy have been identified in the past decade, most cause a disorder of 'pure' seizures," said Noebels. Why some children have a more complicated set of disorders beginning with major motor spasms in infancy followed by cognitive dysfunction and developmental disorders such as autism remained a mystery until the discovery by the BCM team that a mutation in only a single gene explains all four features of catastrophic epilepsy.

A gene known as Aristaless-related homeobox or ARX has a specific mutation called a triplet repeat, which means that a particular genetic (in this case, GCG) is repeated many times in the gene. When the researchers duplicated this particular mutation in specially bred mice, the animals had motor spasm similar to those seen in human infants. Recordings of their brain waves showed that they had several kinds of seizes, included absence epilepsy and general convulsion. They also had learning disabilities and were four times more likely to avoid contact with other mice than their normal counterparts. This behavior is similar to that seen in children with autism or similar disorders in the same spectrum.

"The new model is an essential tool to find a cure for the disorder," said Noebels.

"Mutation of the ARX gene was previously known to affect interneurons, a class of cells that inhibit electrical activity in the brain," said Dr. Maureen Price, the report's lead author and an instructor in neurology at BCM.

When researchers evaluated the brains of the adult mice with the mutated gene, they found that a special class of interneurons had never developed in specific brain regions.

"Further study will allow use to pinpoint which brain region is liked to the autistic-like behavior," said Price.

Two members of the research team Dr. James Frost, professor of neurology at BCM, who developed the concept of the special mouse, and Dr. Richard Hrachovy, also a professor of neurology at BCM are pioneers in the study of human infantile spasms.

"At present there is no proven cure to offer children with this specific epilepsy", said Noebels. "We now have new clues into the mechanism and have already initiated studies with a new class of drugs not previously explored for this disorder." The new drug testing is supported by the private foundation People Against Childhood Epilepsy.

Step 2 in full swing!

2009-08-04T13:31:00.004-05:00

You may recall a post I made a while back about my new step program for Austin.

We (or I, rather) have been stuck on Step 1 ever since.

But, I'm happy to announce that Step 2 (which consists of giving Austin freedom to roam certain, non-carpeted areas of the house) is now a part of our day! I decided to take that step for several reasons...

1. Austin seems more in tune with his seizures. He's starting to have a pre-seizure/cluster behavior. Aura maybe? Dunno. But, it's definitely becoming more evident to me. What's more, he sits well in advance for some as well. So...I thought maybe he would be okay on the non-carpeted areas.

2. There's no keeping this boy behind make-shift barriers made of pillows and blankets anymore! He will climb a mound nearly his height!!

3. His balance has improved tremendously. He used to take the hardest spills that would leave him crying on carpet. I couldn't imagine him falling on the hard floor...without knee and elbow pads! It's still a bit unsteady...but very much improved.

So, what I've done is added a gate in one hallway and I put his play yard in another doorway that leads into the other living area where the fireplace is. Now, he has free reign over his play room and the kitchen, and I can see him everywhere.

It has made a world of difference. In me. And in him. He gets to see areas of the house from a new prospective...a 2' 10" prospective to be exact!! Instead of from my hip! I do let him walk freely in other areas, but not without me. The gate and play yard barriers create a space for roaming. Just his other area expanded a bit. More to see. More to burn that energy!!

Another change I've made is slowly making some of his toys accessible again. The ones that made me crazy before. Some of the ones made of hard plastic that haven't seen the light of day in months are now a major interest to him. It was like buying new stuff...without spending a penny! Some were either blocked by safety guards (pillows, stuffed animals, or his ballpit was my favorite way to block the bigger ones) or simply put away in his room. Anything hard or tall...forget it. I just kept fearing he'd whack his little noggin from a seizure. But since re-introducing them, I'm happy to say there have been no injuries. I don't really expect there to be either (although one is still driving me nuts -but he is loving it way too much for me to take it away again). His helmet actually gives him ample protection. It's just taken me so long to work up the courage to let it happen.

Scam city

2009-07-31T10:48:00.003-05:00

Thought I'd take a quick break from the seizure topics to pass on a warning...

You know those forwarded emails that would typically be deleted upon arrival to your inbox?

The "It happened to me" and "Don't let it happen to you" scam warnings?

Passed around by so many people, who knows if any are true?

Well, I just got off from an extended call with my phone company.

Seems we've been victims of a scam.

LOL...It really did happen to me!!

$299.98 worth of collect calls charged to my phone number.

Ouch!!

This is how it happened...

Three weeks ago today, Chad answered a call from a Houston pay phone. It was a collect call from the Harris County Jail. Curious whether one of our friends or relatives maybe went wild and landed themselves in the slammer, he accepted. The guy on the other end asked him if he knew a Joe Blow (not the actual name he used, but my memory is failing). Point is, he said "no". The guy then told him he would be charged $10 for that phone call unless he called this number and extension and told the phone company he didn't know this Joe Blow guy.

BIG MISTAKE!!!!

He called. And called. And called. Obviously wanting to avoid a $10 charge. He got nothing. Like it wasn't a working number. Anyway, he wrote the ten bucks off and we forgot about it.

That night, as we were watching a movie, our phone did a funny chirpy ring. Then silence.

About 30 minutes later, it did it again. And so on. Til about 11 pm.

Note: We rarely use our land line. We have lovely dial up internet access, so it usually out of commission anyway.

Back to the story. This went on for about a week. The phone would chirp ever so often. Then, I realized that no one had been calling. I tried dialing my home phone number from my cell. It rang on my cell phone end and clicked. As if someone picked up, but there was nothing. But on my land line end, it was dial tone.

Call me crazy, but I let this go on for three weeks. Thinking it was my phone and not my line. I had even put a new phone on my shopping list. It didn't occur to me that it could be my phone line. Internet worked. I could call out on the phone. And, anyone really needing to reach me has my cell number anyway.

So, last night Chad opens our phone bill. Words cannot describe his reaction and I prefer not to repeat what he said! LOL

There was an entire page worth of collect phone calls from Houston. Thirty-seven to be exact. $299.98 worth of charges.

It slowly started to make sense. The last number that registered on our caller ID was the pay phone number. On 7/10. The night our phone started chirping was 7/10. The charges started on 7/10.

Turns out, when Chad dialed that number to rid the $10 charge, he actually had our calls forwarded to another number. Unlimited access to rack 'em up. Courtesy of us!

All we had to do to remove the forward was dial 73#. But, we were completely clueless as to what was going on.

It seems so obviously deceptive now. We feel pretty ignorant that we were none the wiser.

But, hindsight is 20/20.

By the way, those charges only went thru 7/16. We probably have another hefty bill coming next month. We aren't obligated to pay our phone company, but there was a third party company (the one used for the collect calls) involved.

I did some poking around online. The company associated (the one we owe for the charges) is Correctional Billing Services. It's for inmates to set up accounts to place collect calls to their friends and family. Evidently, fraud is a common problem as there's a Dispute Center link on their website, and fraudulent calls are the first topic listed.

I have to fill out an investigation report, file a police report... complete and total insanity.

It may take up to 30 days for the investigation to be complete...and to release us of financial obligation.

So, guys, heed my warning.

IF YOU ACCEPT A COLLECT CALL FROM A JAIL, AND DO NOT KNOW THE PERSON....HANG UP THE BLEEPING PHONE!!!!

Med Update

2009-07-29T09:59:00.002-05:00

In addition to the new EEG developments and LGS discussion, we also touched on meds at our last epi visit.

You may remember the mention of Felbatol in one of my previous posts. We actually decided at that time that we did not want to introduce it just yet. Too many pending questions that could have easily left us scratching our heads and confused. Stopping, weaning, and starting meds for Austin at the same time is not a good idea. Many factors to consider.

Plus, the warnings online for the med scared me senseless. It's considered a Black Box med. Meaning, there have been serious safety hazards and therefore must contain a warning stating those risks in a black box. Depakene (valproic acid) also carries similar risks. Austin handled that one like a champ though. But, before we started it, it took serious persuasion on our epi's part to convince me it would be okay.

Quick facts:

Felbatol can cause liver and blood complications. So, it's vital to have routine lab work to monitor any changes in the blood or liver function that could occur.

That's why it should never be used as a frontline med. It should only be used in severe cases when many other AEDs have failed.

As dead set against it as I was in the beginning, we did decide to give it a go. After the epi sat us down and thoroughly explained it, we felt much more at ease. He told us that there have been very little, if any, fatalities in young children. He also said that the majority of the serious complications have occurred in adults. I don't think it's even recommended for adults anymore actually. Anyway, he said he would not recommend it for Austin unless he was confident that he could tolerate it.

We will need labs every two weeks for the first few months. Also, it's a fairly concentrated liquid so he will not need much at a time. We will start slowly with .5ml three times daily and work our way up to 2ml three times daily over the next four weeks.

Although this has proven to be a med that helps when others don't, I'm still weary about it. Anxious to see results, but realistic and logical at the same time.

Well, let me get honest here. That's what my brain says. My heart always, ALWAYS hopes it's the one. There's no rationalizing with my heart or talking logic to it. It feels what it feels.

And right now, it's feeling desperation. For just a little help here. Some relief. With no major complications. Or side effects. Something that will benefit him. That will continue to let him see past the fuzziness. Not bring him back down.

So, while my brain keeps the sense in check, my heart really wants to give it a chance. Talk about an internal struggle.

I've gotta keep reminding myself that every new med has potential. Every new med could be our chance. Even if others have failed. We've gotta keep trying, right?

The Good, The Bad, and The Cute!

2009-07-28T11:34:00.011-05:00

You're all caught up on the good news we received in Houston last Friday. No hyps! Yay!

But, I did mention there was some alarming news we learned too. The bad.

I haven't been able to get into it until now. I didn't want to put a damper on the good.

So, here it is.

Our epilepsy specialist dropped the bomb. The one I've been dreading to hear for about a year now. Ever since I started suspecting that Austin was having atonic seizures instead of just single, isolated myoclonic infantile spasm seizures.

It was...

The L word.

LGS.

Lennox-Gastaut Syndrome.

It's a seizure disorder too, just like Infantile Spasms/West Syndrome. It has it's own triad of symptoms too. In order for a diagnosis of West Syndrome (what we've been dealing with -I don't usually refer to it as West Syndrome) to be made, the child having the infantile spasm seizures must have the following: the infantile spasms, of course, an EEG pattern of hypsarrythmia, and developmental delay. In order for LGS to be diagnosed, the child must have multiple types of seizures (typically atonics and tonics and usually resistant to AEDs), have a distinct EEG pattern, and cognitive impairment.

All kids with IS are at a higher risk for developing LGS. Kids who have developed different seizures on top of the infantile spasms are at an even higher risk. Those who have had unsuccessful treatment of those seizures over a long period of time...the risk is even higher.

Austin does not have LGS. BUT, our epi feels quite strongly he is headed in that direction. So, while the hyps-free EEG was good, the fear of another disorder around the corner is looming. It has been a fear of mine for a very long time. As soon as I learned of it and learned about it, all I could do was hope and pray that this would not be our fate.

He does not have the EEG pattern, but he is in the highest risk category he can be in at this point. He also does not have tonic type seizures either. But, he does have the atonics. A very bad sign, according to the epi.

Although he did say that LGS is just another name for another disorder and it wouldn't necessarily mean it would be worst case scenario of LGS, it scares the life out of me. Some kids with it fare well. Others. Not so well.

I haven't heard many positive stories about this syndrome. That doesn't help the fear factor. Fact is, I try to avoid looking it up entirely. And I've been that way for months. Fearing if I knew too much, I would realize it's a very possible future for us. Because he meets several of the diagnostic criteria already. My mind doesn't like to go there. Worrying about another disorder before we've even tackled the first. One thing at a time is the only way I can handle this. But, he said it out loud Friday. There's no more pretending I'm ignorant to it.

But, what can I do about it? Nothing really. Hope, pray, and love him through this. Concentrate on today before I know what tomorrow holds. Although my dreams of beating this IS and continuing on with our lives seizure and disorder free get a little fuzzy sometimes. With multiple interruptions now in my mind containing a bold LGS flashing brightly in my line of vision. All the while, constantly trying to push it aside and remind myself TODAY. TODAY. Not tomorrow. A tug of war in the brain so to speak.

So, that's what I'm working on. Today. Today, he is a happy, squealy, lively new child. There is a new light in his eyes. One that should not be dimmed because of my fears. Of what has yet to happen.

And, so, with that...(And to end this on a good note)

I give you...

THE CUTE!

The past week or so has revealed, little by little, the Austin I remember. It's been months since I've seen this personality of his that, honestly, I almost forgot existed. He's been hiding beneath this hazy cloud of medicine. Slowly, it's lifting. Each day he is being released to me just a little bit more. I can't even begin to imagine what I might see if there were no more seizures stealing their own piece of him.

I know this alertness may only be temporary. There will be new med trials to come...all bound to have their own side effects. But, this possibly temporary phase has given me exactly what I needed. It lights a fire under me again. Because I see now that the Austin I knew is not really gone. He's still in there. Waiting to be saved. And it gives me the strength to keep pushing. And this is just a glimmer of who he really is in there -under the medicine cloud. I don't want just a taste of how he should be. I want all of him back again.

Hyps! Hyps! Hooray!!

2009-07-27T11:19:00.002-05:00

So, I've expressed my excitement for recent absence of hypsarrythmia in Austin's latest EEG. It's a truly positive step in the direction we would like to go.

A more organized, hyps-free EEG is exactly what we were hoping to see -although I was not expecting it.

For all of you that read my last entry, I explained that it was a spontaneous run through of the newest developments...not many explanations to go along with it.

So, this is my best attempt.

Hypsarrythmia is a pattern that is characteristic of Infantile Spasms. I'm not 100% sure, but I think that this pattern is ONLY seen in kids with IS. It is a very chaotic and irregular pattern, also described as an electrical storm occurring throughout the brain. All day. Every day. Regardless whether there are seizures occurring. It just takes over. So, you can imagine what this means for our kids' development and so forth while experiencing this type of constant interruption. Another downside to hyps? It makes it extremely difficult to interpret the EEGs themselves. For a seizure focus and so forth. I am no expert, this is about the extent of my knowledge. There is more specific information available on the web, that describes the voltage and whatnot...but it's over my head most of the time anyway. I'm just explaining what I've gathered over time, and how our epi has described it to me. I guess I could include a link to more reliable, precise info. I'll have to find the best source so maybe later...

Some kids do not have this pattern, but most do. Diagnosis is sometimes difficult when it's not present, simply because there are other infantile spasm-like movements that resemble IS. Hyps is usually the identifying factor in making the diagnosis of IS. Austin's very first EEG did not show the full characteristic hypsarrythmia pattern. I believe it was more of a modified hyps pattern. The neuros at the time said that it wasn't what they would normally see, but that it was most likely headed in that direction. The next EEG, three months later, did show it. And there has been no improvement up until now.

Simultaneously with his new emerging personality. And developmental progress. Our epi said it is most likely the combination of the decrease in meds and improved EEG.

Another reason of mine for not exploding with optimism. It is typical for the hyps to start fading around this time. Dr. Chugani told me that during our visit back in March. Which reminds me, I'm debating on whether or not to contact him and let him know that the hyps are gone. He did tell me to let him know, but deep down, I still think it's too soon for Austin to be reevaluated for surgery. Maybe I'll contact him to find out where to go from here -like what other developments need to occur for us to take another serious look into surgical intervention.

So, what does this mean? I still don't know to be honest. Yes, it's good. Very good. But, his seizures are far from gone.

My main question is, what is it that specifically causes the lack of progression in development? Three factors to consider. The constant, chaos in their brains, the seizures themselves, or the underlying cause which triggered the IS disorder to begin with. Maybe some of my more seasoned IS friends can help me with that.

So, while I'm thrilled to not have that in the picture anymore for the moment, I'm still concerned for the future. This does not mean it's the end of the battle. We still could be a long, long way from the end.

But, I will still celebrate the new skills and joy that are now so evident in him, while still keeping a firm hold on my goal. No seizures and a normal EEG.

Then, maybe I can breathe again.

A loaded week..blogworthy for sure!

2009-07-25T13:59:00.003-05:00

What a week it has been!

A week of holding my breath, counting seizures, freaking out, second guessing the med weans...

Seizures have been up there. Really up there. But, as obvious as it may seem to everyone outside our household, I'm still not entirely convinced it's the weaning. Wondering, but still not sure.

His alertness, personality, cognition, on the other hand...THAT is MAJOR!!! I believe it was Wednesday when my mom called for her daily lunch hour Austin check in. I had been waiting on that call because this time, I had definite good news! He had been a different child all day. Seizures were waaayyy down (he'd only had about 8 or so when she called -he's usually in the 50ish range by then), and he'd been laughing and engaging like I hadn't seen in months! He's also made progress in some motor skills...he's been crawling over objects but would rarely, if ever, take the initiative to do it on his own. I would have to set him up for it (like put him belly down on the pillows or the edge of his ball pit) before he'd crawl over. This week has been full of chasing him around the house because he's been crawling over his playroom barriers (the blankets and pillows in the doorways)!! It's exhausting...but WONDERFUL!!! We've also seen a new curiosity peak in him recently. Instead of focusing only on walking or his select set of toys, he's been exploring more and more. Getting into everything! Wanting everything! It's been amazing...and tiring. So much that I haven't had much opportunity to update. I've been savoring the good moments...but also still very much aware of the nasty seizures that seem to waltz in and take over. Too often. A big high is typically followed by a major crash, right? That's where I've been. One moment is exhilarating, while the ones that follow zap me and take me back to Seizureland. Personally, I think those clusters and drops are much more difficult to witness after such a promising and joyful moment of peace from it. Anyway....

We had a typical EEG and epi visit in Houston yesterday. What did I say earlier about worrying about the EEGs? I'm always worried and nervous. We weren't expecting any improvement because of the ongoing infantile spasm and atonic seizures. They are the same if not worse than they were during his last one.

So...when the epi came in and proceeded to tell us that the hypsarrythmia is gone...I was obviously surprised. That's right. It's gone! The EEG altogether has improved quite a bit. There is much more organization and improved sleep spindles as well. Many of you may know exactly what I mean when I say all that...many may not. This was a spontaneous post, so I will get into specifics later on...when I can collect my thoughts better.

I just wanted to update everyone on this past week. It's definitely a good thing that the EEG has improved. What this means for now on...still unclear. Remember, we are still dealing with atonic seizures as well -a totally different type from the infantile spasm seizures. But, still a positive. Actually, the most positive piece of news we've received since he was diagnosed.

There was also some alarming news we received so that puts a halt on the parade for now. If you were wondering why I'm not as excited as I should be. I am happy though. Very. ANY improvement on the EEG is a step forward. But, I'll get into the rest tomorrow maybe.

As for now. Austin is alerting me that he is awake...and ready to get up!!! We're heading off to visit Grammer!!

Counting again

2009-07-14T20:28:00.004-05:00

Our first full 24 hours off Depakene (valproic acid). I chose not to wean since the epi didn't think it was necessary.

I rarely get anxious or scared over weans. Actually, I'm usually just the opposite. Austin tends to do really well, so I'm always glad to see an ineffective med go. But, this one proved to be a little different. I've been watching and waiting for extra seizures. Nervous. Paranoid.

I even picked up the notebook again to reinstate the counting routine. Day three so far. I thought I should start counting again before the wean.

Sunday he had 15 drops and three clusters containing 24 seizures. Grand total for Sunday: 39

Yesterday (Monday) he had 19 drops and 5 clusters containing 33 seizures. Grand total: 52

So far today (Tuesday 8:30pm) he's had 22 drops and 3 clusters containing 51 seizures. We're at 73 right now.

I only gave him one of his 3 doses of the valproic acid yesterday and none today. So, it may look like there's a trend here with seizures going up. But, this has actually been very common for him. Low even. Sunday was VERY low. He had 4 clusters in one hour on Saturday. I didn't count them all, but I'd be willing to bet that in just that one hour, he had at least 75. So...this isn't unusual for him. Especially to vary so much from one day to the next.

It's impossible to think I've caught them all. There's no way. I would drive us both nuts by smothering him like I used to. Just to catch them all. So, I've been more relaxed this time around, and it's working it out so far.

Zonisamide is going to be a tough one. It will take us six weeks to complete the wean. He's currently taking six 50mg capsules daily. We will lower it by one capsule a week until he's done. I'm nervous about this one too. He's been taking this for over a year now. It was his first med (other than ACTH), and for months and months I was convinced it helped him tremendously. I would even completely freak if I was just a few minutes late in giving it to him. It's hard to believe he'll be off it soon. It's become the one constant since this all began. Our one and only familiar med during all these different trials. I'm relieved it will be so gradual.
(Leave it to me to get emotionally attached to a freakin' med...that is NOT working! I'm not kidding when I say I have issues with change!!)

Update: I started this post about 8:30pm, but wasn't able to finish it all at once. Austin's seizure count for the day ended in 94. Much higher than yesterday...But not above average. I'm trying to be patient...and not paranoid that's it has anything to do with the meds!!

This old house

2009-07-14T11:47:00.013-05:00

A visit this morning from our social worker and ECI services coordinator prompted this post.

During conversation, she pointed out how nice Austin's play room is set up for his needs. Soft carpet, no hard, bulky furniture with sharp edges, padding where necessary, soft toys, etc. She remarked at how we have efficiently accommodated his special needs.

Actually....it just kind of happened that way. Interesting story, really. Full of irony and fate and circumstance.

We started out as first time homeowners about five years ago in a town about thirty minutes from here. Just outside the city where I worked and an easy commute for Chad's job, but nearly an hour away from both of our parents.

Upon moving there, maybe about three months in, we realized there were numerous flood claims on our house that were not disclosed to us. But, after learning that, we would then be obligated to disclose to future potential buyers. We knew when we bought it that it would not be our forever home, merely a good starter house (which by the way was completely covered in ceramic tile). What a bind we were in. A small house with a small yard...and soon to have disruptive and questionable neighbors. Man. We were screwed!

In September of 2005, we were hit with a whopper of a flood, courtesy of Hurricane Rita. Six months of renovating and living in a travel trailer in the yard was quite the test. But, Chad and I soon learned we had a knack for remodels. Turns out he's quite the rookie carpenter!

(we lost three six foot windows in the front)

(Above: Some of the interior water damage Below: The front windows that cracked and buckled from the wind and water)

(Clockwise from left: flood damage; before the flood; after remodel)

(Before and after)

So, we lived there for about another year, when we were confronted with a proposition. A city-wide buyout of excessively flooded homes...which we knew we'd be crazy not to accept. The thought of ever selling our little starter house for enough to recoup costs was no longer conceivable. We desperately wanted to take it.

And this just so happened to come about during my pregnancy. Actually, I also found out during the same week that my job site would be closing it's doors, and I would soon be jobless. The scheduled closing was to take place within a couple weeks of my scheduled due date. How's that for irony? On top of that, my excellent insurance benefits would continue for an extra 30 days beyond the closing.

So, we happened upon this home. Not very big either, but it's sufficient. There's a couple acres here...and it's definitely more private and remote. Sitting halfway between our parents and Chad's work, it was the perfect location. It needed extensive TLC. But, we were ready for another challenge. We began remodeling little by little over the summer of 2007. The first week of October, we were ready to move in (renovation was still not complete, but we were running out of time). My job ended about the same time...we closed on our other house with the city in mid-October. Austin was born on October 25, we were released from the hospital Oct. 28, and my insurance ran out Oct. 29.

Everything just happened to fall into place perfectly, wouldn't you say?

As time went on, and Austin got a little easier for us to handle, we decided to pick up where we left off with the remodel. That's when Austin's play room was started (although the intended purpose at the time was a living room). Actually, Chad had started demo on our master bathroom first. Midway through, I convinced him to shift his focus on the other living room. I told him that Austin would soon be crawling and we needed more living space. So, that he did. In early May of 2008, the room was ready for flooring. Refinish the hardwood floors or install carpet? Hmmm. I really wanted the wood floors. But, we convinced ourselves at the very last minute that carpet would be best for a baby. So, the first week of May, we ordered the carpet. About a week or so later...Austin was diagnosed with Infantile Spasms.

About a week after arriving home from the hospital, the carpet was in and ready to be installed. Of course we wouldn't realize until later how thankful we were for making that last minute decision on the carpet. Or the last minute decision to remodel that room instead. It soon became Austin's hangout. It was wide open and he had it all to himself. He still does.

(Right after new carpet was installed)

So, we never planned to give Austin an entire play room. Not that we didn't want to..but we didn't think we had the space. We didn't plan to carpet that room in the beginning. Just like I didn't plan to lose my job. Or move so close to my parents. It just kind of happened that way.

Shortly after Austin was born, I thought how crazy and lucky and fateful that was. I honestly didn't want to work right after having a new baby. My insurance was so wonderful that I paid $0 altogether. I really wanted to be closer to my parents. And we desperately needed to get out from under that house. So, for nearly six months of mucho stress leading up to it...everything fell together impeccably in just one month.

For so long I've looked back on 2007 as a year of plans and obstacles coming together. Almost as if He was setting the stage for us. Only to wonder why 2008 was the year our world would come crashing down...destroying us...those plans and achievements falling apart before our eyes. Shaking...no wrong word...Rocking my faith beyond belief.

Honestly though, now, I can't even imagine living there in that other house with Austin and the situation we're in now with him. Being so far from family. Ceramic tile galore. An arm's length from neighbors I didn't trust that kept the noise going every hour of the day. Floods and a baby and possibly more travel trailer living in our future. Need I say more?

We have a home here. A home that is still rough around the edges in terms of aesthetics. But, a home that is safe, where neighbors come to lend a hand. Even to help you give your baby an injection. Or offer to watch him while you take a much needed shower.

It's not as cute...or tidy...as the other house..the newly remodeled updated house. But, it's more of a home than that house could have ever been.

Ironic that I say that now. Because just months ago, I had been complaining about how I still hate it here. How I miss our old house. But I wasn't looking at the bigger picture.

I missed our old lifestyle. The life that had no seizures or worries. The one where when I tried to invision the future, I saw a baby running around carefree.

And, I still don't particularly like it here in this small, unfamiliar town in this old house that still needs tons of repairs. It's always felt like a stepping stone. Not our forever home.

Even with that said...I still can't imagine being anywhere else right now. This is home. At least for now.