Three little words

(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

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...

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

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

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...

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

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

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

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

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

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

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.