Tuesday, October 28, 2008


At the party with Mommy and Daddy!

On his birthday!

Once again, sorry for the long lapse in posting...as you know, we've had a lot to keep us busy...as usual! I barely even had time to shower (or did I?).. But, I wouldn't have wanted it any other way. My baby turned ONE on Saturday, so of course I gladly busied myself trying to make it the most perfect 1st birthday ever...but as with most events, there were ups and downs...

First of all, I learned Friday that my grandmother (my Mom's mom) had passed away earlier that morning. It was a total shock, and naturally, devastating. The fact that I hadn't seen her in over a year gave me so many regrets. She never met my baby. I never made the effort to visit her in Alabama. Oh, how she would have loved to have met him! She used to ooh and aah over the pictures I would send her of him...but I never got him over there to meet her in person. I started a dvd for her just before his spasms began but never finished it. No one ever told her about the Infantile Spasms, so when that started, and we began ACTH, I put the dvd on the back burner. Honestly, I don't think the reality of it all has set in just yet. We were faced with that, Austin's first birthday, and this ongoing battle of the spasms all at one time. Mom was adamant about having the party this weekend though. So, we made the best of it, and Meme would have been proud.

The night before his birthday, I couldn't bear to leave him in his crib. I wanted to wake up with him on his big day and see if just maybe he would somehow morph into a one-year old overnight! To my surprise, he still looked like the same baby from Friday night...no apparent or distinct change to be found! But it was so nice to wake up and see him there on his first birthday. It wasn't until Saturday night that a swarm of emotions came over me. I was reminiscing over that infamous day in the hospital when I first laid eyes on him. I remembered all the emotions and thoughts I had on that day when I first held him. I was so relieved that he was pronounced as healthy as he could be. I really and truly thought we were in the clear at that moment. So, on his first birthday, I couldn't help but think of how thankful I was that day, and realize how little I knew of what lied ahead. Add to that the fact that Saturday was one of the worst spasm days I've seen in a long time...I just lost it. But, just as quickly as the tears came, they stopped. My baby was one...he was really starting to walk...he looked at me and smiled. That's when I realized what I do have rather than what I don't have. A beautiful and otherwise healthy baby that I adore.

The party turned out great -with the exceptions of a few minor meltdowns of my own (silly now, but MAJOR then!). So many people came and doted on my *screaming* baby. Why is that when you really, really, really need them to take a nap, they won't?? He was quite the nap-protester so after all those attempts, he won. We had to get on with the party. He screamed through all of "Happy Birthday" and half of the gifts. It wasn't until Chad dipped his paci in cake frosting that he calmed down. Oh, and he seriously dug into that cake! He was reluctant at first, but he got the hang of it eventually...Before long his hands were covered and the plate was upside down! What a day!

By the way, I couldn't end this without thanking a few people who kept me sane Sunday! Erin, Jill, Haley, and Dylan...and Mom. Erin came to help with the decorations and even made an emergency run for a *working* helium tank -my lips are sealed on the truth behind that one! Jill and the kids came to help out with Austin while we were decorating. And, Mom...she tucked her emotions in her pocket for Austin...not because I wanted her to, but because that's how selfless she is...she was determined that her Austin would have a "Happy Birthday".

Thursday, October 23, 2008

2 days til the BIG 1!!!


Well, it's been exactly one year since I found out Austin would be joining us on October 25! My OB checked me out and said, "How's Thursday sound?" Oh, the excitement, the fear, the anticipation! We had just moved in this house and we still had boxes and boxes stacked everywhere (I wasn't exactly doing my share of the unpacking at that point!)...I called my mom in near panic that Austin's goodies wouldn't be ready for him. Bless her heart, she helped me unpack, wash all his clothes, hang drapes, you name it! I was disappointed enough that we wouldn't be completely unpacked and settled when he arrived, I wanted to at least make sure his room was perfect! Ahhh, the memories!

I've went on and on about how I never expected us to be in this situation...the disappointment, the anger...blah, blah, blah...Yeah, I'm soooo sad that this wasn't my ideal life...BUT, who does get their perfect life? Everyone has obstacles and roadblocks on their paths to the perfect life. I'm starting to learn that maybe this is just a detour and not a complete change in destination. Gosh, I hope so. I pray that one day very soon we will get passed this point on the map and just truck on to Italy. I've always dreamed of Italy, but Holland would be okay too!
(Any of you read that post about Holland? If not, please read it...the author explains what it feels like to raise a child with special needs.)

So, here we are...in transition (at the airport?), waiting to see where we will be going!

Oh, this stupid IS! Wouldn't it be so much easier if we just knew something??? What route we will be heading??? Will our babies be part of the lucky 15%? No one knows. Isn't that the hardest part? Wondering what the outcome will be...will the delays or damage be permanent, will they recover...partially...fully..at all? What is the perfect drug...what's the perfect dose? As horrible as this may sound, I would rather a different disease -of course, not life threatening, but treatable. At least then I would know what to prepare for and what to do for my baby.

But, that's not in the cards for us. We are dealing with IS, and I'm trying to learn how to deal with it and accept it. I'm trying to stop pretending that it's a dream, or suddenly time will turn back. It's not, and I have to move on and help Austin. If I only knew how. Love, acceptance, hope, advocacy, and patience are about all I know right now.

The best thing right now is that Austin seems so much happier. The happier he is, the easier the journey. ACTH wrecked everything -we had continuing spasms AND misery to accompany them. Poor baby...he still hasn't recovered his good sleeping habits. But, thankfully, it's nothing like it was! He's losing the weight (and unfortunately his appetite), sleeping much better, seems to feel WAY better...everything is a little better in a sense. At least it's not all the spasms AND the ACTH effects anymore. I wish we would have never started that treatment, but I would have always wondered if it would have worked. At least there are no doubts.

Now Zonegran! I know it does have some effect on the spasms. The nurse at our epilepsy clinic didn't seem to think such a tiny amount spilled would make such a difference. She kind of acted like I was overreacting...I've seen this happen at least three times now! It's not a coincidence. EVERY single time that has happened (where he didn't get all of his dose), there has been a dramatic rise in spasms soon to follow. Plus, there's the new cold, his tummy issues...add it all together for an even lower threshold for seizures. Like I said before, I know my baby. They may have treated lots of kids, but if they knew it all, we wouldn't still be dealing with this right now!
Oh, I have GOT to lighten this up a bit!

We are going BIRTHDAY shopping tomorrow! Yes, I am THE procrastinator! Party is Sunday and I'm shopping on Friday! Classic Holli for you! I'm getting so excited...I've got balloons, banners, crepe paper, you name it...I can't wait to decorate...but, of course, I'm sure I'll wait 'til Sunday morning! :) I'm sure Mom is laughing right about now!
Oh, man, OT in 20 minutes! I hope he cooperates this time! :)

Wednesday, October 22, 2008

Playing Catch Up!

It's been entirely too long since my last post! We have been running around like crazy for a week! My "normal" day was short-lived...

I'm not sure where to begin...can't remember where I left off!

I know the first thing that had us tied up was my high school reunion Saturday...ugh, just another reminder that I'm not 18 anymore!! It was great, but the leading up to it was quite stressful (not that I contributed to the planning)...you know, the hair, the make-up, the outfit...gotta hide the fact that I've in fact aged since these people last saw me! Austin got to go stay with his Nana and Pawpaw, so Chad and I actually got an entire night out! It was nice, we haven't "went out" in ages. Not that he doesn't ever visit the grandparents, but we usually hang back at home and try to catch up on rest!

I think I mentioned before that Austin is having more of the yucky poo. Well, I submitted more stool samples last Monday and got the results Friday. Not blood...WHAT?? I'm no genius, but one thing I do know...that was NOT berries or beets in his diapers! I really have little confidence in the lab that did the analyzing to tell you the truth. They are awful. They've made three different errors with his blood work...I've even called their HR to complain before. Bottom line, I'm not counting on that to be accurate. I decided to drop the argument about the blood findings and just wait until our gastroenterologist appointment...which was yesterday.

I'm as confused as ever now. All the lab results were out of whack (from the ER and last week's), so I got to collect EVEN MORE last night. It's triple-bagged in the fridge right now as we speak! His idea is that it is, in fact, related to the antibiotics he was on for the ear infection. He called it Lactobacillus GG. The newest stool sample should either confirm or rule that out. We'll see. I really thought they tested for bacteria already...We go back in two weeks, and if nothing can be identified from the sample, then he will have to be scoped. I seriously hope that doesn't have to happen.

Oh, and we had quite an interesting night Monday. Austin threw all his meds up so I had to creatively find another method to re-dose. It was a disaster! That stuff DOES NOT dissolve well in liquid, but I was afraid to give him anymore solids. We did the best we could, but he still didn't get it all. He woke at 4 am with a cluster of about 50 spasms. I haven't seen one like that in a while. He gradually improved as the day went on, so that was a relief. I was terrified that it would be another one of those setbacks where he wouldn't easily recover. So far, so good though.

He's also stepping like a maniac! I still can't call it walking, but he's getting better and better! He's also showing a little more interest in his toys and interacting with people. I'm getting more and more smiles now that aren't related to spasms. I just hope he keeps it up. Especially since he'll be having his big one year birthday party this weekend! I really really want him to enjoy it. My biggest fear is that he will be withdrawn through the whole thing. I'm trying to relax a little and get exited about it though, rather than worry about what hasn't even happened yet.

I'm going to try to improve my posting habits! It's been tough with the busy days and long nights! Austin has been a bedtime protester lately, so I'm usually beat when he does finally go to sleep!

Oh, just realized that today was my original due date with Austin! It seems like it was yesterday...that anticipation was killer! Soooo hard to believe it's been a year!

Thursday, October 16, 2008

Busy, Busy, Busy!!

I am FINALLY enjoying one of those "normal" days at home! For the past week or so it's been either doctor appointments, ECI visits, or errands filling up our days. I'm happily sitting in my pjs (yeah even though it's after 2:00pm!) and haven't even thought of brushing my hair! Nothing in the books for us today!! :)

Austin's having more of that yucky poo...We went to the pedi again last Friday, which led us to more poopy-scooping and a referral to a pedi GI specialist. The GI appointment is in Beaumont next week, thankfully not Houston. Still waiting on the results from the samples.

I've been noticing a slight change in him over the past couple days. Spasms are still up there, but probably only half the amount he was having a few days ago. With that, he seems to be much more interactive and smiley! Our OT commented yesterday on how much more he was using his right hand to grab toys (coincidence?) and how much more cooperative he was. I swear he even tried to clap last night! Maybe not intentionally "clapping", but I've never seen him bring his hands together quite like that! He even grinned when he did it!

I've been getting so involved with trying to get more services going with ECI. We are doubling OT sessions and SW visits. And, even though he's too young to really start speech therapy, we had the speech therapist come in anyway for a consultation. She gave us soooo many great ideas to work with him. We're also bringing in a physical therapist and nutritionist for their opinions as well. Our social worker just admitted she really doesn't have experience with IS and that she wants to get everyone involved for ideas. I guess it never really registered with her that he could regress because he was pretty much on target at the first evaluation. He steadily progressed in his gross motor skills, but everything else was overlooked. Maybe it was just attributed to the array of meds he was on because he was usually fussy at sessions. It took a frantic call from me about the last Houston visit for her to realize the scope of the situation.

I just want to know he is aware of his surroundings. Sometimes I just don't know. He doesn't show many reactions and usually isn't interested in anything but standing. I'm soooo so glad he can stand, don't get me wrong, but it is so much more important for me to know his personality is blossoming. I would rather him communicate, react, socialize, and play rather than walk. Does that sound terrible? I want to know that when I am talking to him, he is trying to understand what I'm saying.

I think finding that right balance in everything is my biggest struggle. Now that his first birthday is fast approaching, I can't help but envision where I thought we would be...only to be hit with the reality. Trying to balance all these emotions is the toughest part. It's certainly not healthy to be depressed all the time...But, I find myself grieving over what life was supposed to be right now. In my picture-perfect vision from a year ago, Austin would have been running or crawling around getting into Mommy's stuff, clapping and dancing, saying ma-ma and da-da, and playing with all the goodies I was planning on buying him. I could see him sitting at his high chair eating Cheerios and making messes or sitting on the kitchen floor banging on pots and pans. I definitely never thought we would be counting seizures or teaching him how to push buttons at his one year mark. That's where the balance comes in...the grieving, the fear, the acceptance...then there's the pure joy he gives me when he smiles, the excitement I have when he reaches for me, and the warmth I feel when he snuggles to me. I'm so thankful for any milestone he reaches. So, why am I so sad at the same time? I will always always accept Austin no matter the outcome. Why can't I accept anything else?

That's the struggle. Acceptance and gratitude vs. anger and resentment.

If I could just concentrate on today. I know that's what helps. Get through today and worry about tomorrow -tomorrow. I wish I could just make myself do that! And, sometimes I do. I'm not sad all the time. Austin makes me too happy to be sad all the time. I love that little monkey sooo much...just gotta gear that yuck into something constructive and move on. What's healthy for me only helps my little guy!

Tuesday, October 14, 2008

New motivation...

I have to admit, I've been avoiding posting for the past few days...mostly because I've been waiting for good news to share instead of this depressing junk that has consumed us lately. While I don't have the best to share, it's getting a little better.

I've noticed a very slight decrease in seizures/spasms. He seems to be adjusting a little more to the increased Zonegran dose too (we're up to 300mg/day now). At first, I was beside myself because I couldn't see what good it could do since all he wanted to do was sleep. He would get up, take meds, practice standing for a while, and was ready to collapse. This cycle would continue throughout the day. He's still sleeping more than normal, but his alertness is improving slowly.

Another reason I've been sort of MIA lately is because of this new book I've been reading. I've just been glued to this thing. Although it doesn't tackle Infantile Spasms so much, it does have tons of info that I've been trying to understand for months. It actually makes sense. I was telling a fellow IS parent about it earlier in an email. It points out so much that I need to check into. I'm learning more from this than all the research I've done over the past five months combined. I'm looking into every possible avenue for an underlying cause...whether that means finding it or ruling it out. Remember, we want to rule them ALL out. We DON'T want to find a devastating metabolic disease, brain abnormality, etc. BUT, it is so crucial that we know one way or another. I'm also realizing that every little detail matters. The right arm (not sure if I got into that on here -I will soon), the direction he rolls his eyes during a seizure...

These doctors MAY spend thirty minutes observing/evaluating these kiddos every few months. In that time they may or may not have a seizure. I'm with Austin 24/7, so I KNOW when something is off, or when something new is occurring. That's all I do, all day, everyday...is watch. Watching for a sign of either something new, or something that could point to something else. When you don't have ANY answers about ANYTHING, all you can do is LOOK LOOK LOOK. I'm looking for anything and everything that the docs may not have the opportunity to see for themselves...that could be relevant and crucial. Just as I told Danielle, my old preconceived notion that these doctors know it all, is gone...out the window. Duh, I know they know more than me...BUT, they DO NOT know my baby more than me! I know every move he makes, they certainly don't!

This book has inspired me to take control of the situation. To explore options, research, observe...I did not realize how important that could be. There is SO much more to this disorder than I thought...thanks to our horrible previous neurologist that didn't have a clue!

I will definitely try to update more often. I've just been so consumed with all this new info...still trying to figure out where to start!

I still have so much to say, but running short on time...Austin's up from his nap and we're going to get ready to head to NANA's!!! I'll be checking back soon...

Wednesday, October 8, 2008

After the EEG...He was zonked!

Now that I've got some of the negativity out of my system, I thought I'd share a little TX Children's Hosp. humor (well, it's not really funny, but it's one of those things that you can't help but laugh because it's too ridiculous to really believe)...

Let me start by reminding you all that last Friday's appointment was totally last minute. The guy called me up Thursday afternoon and asked if we could be there at 12:45pm...then 10 am...then 8 am...but really 7:30 am. Soooo, being, oh, about 2-3 hours away (depending on traffic), we thought we would leave no later than 4:30 am...just to be on the safe side...:)

Any of you mothers know that you may be able to survive a shot-gun wake up (i.e. jump out of bed, throw on clothes, and jet out), but with a baby...not the case. So that meant my wake up time was 3 am!!! LOL, Austin didn't go to bed (despite persistent trying) until midnight!

(We decided looking for a hotel room so last minute would be fruitless -you can't even find a vacant room in Beaumont for crying out loud- because of Ike)

Now, that's only leading up to the juiciest...

Already sleep deprived, we made our way to the big city of Houston...unsure how the traffic may be after the hurricane. I've never seen it so bad at 6:30 am! That was just the beginning...

We made it on time, thankfully, despite the traffic. The EEG went smoothly...Austin screamed of course while the tech was doing the prep. But, he calmed much easier this time and slept, well, like a baby!

We had the 4 hour gap between the EEG and the doctor appointment. Austin was an angel...he slept most of the time...even when I tried to give him his meds! No problems there.

Then came the appointment. We got in right away (relief). Doc showed up within 5 min (a first). You all know what went on there. We were devastated. You'd think after such a stressful appointment, the staff would do anything and everything to accommodate you...


We waited an entire hour JUST TO CHECK OUT!!! Oh, there was a lab order, MRI and LP to schedule...scripts to grab...not to mention a follow up visit. We went up to the 12th floor to schedule the MRI...wait, wait, wait. Didn't get anything accomplished. On a waiting list.

We get back down to the 9th floor to finish getting all scheduled...I wait, wait, wait (still in tears, by the way). Dummy at the checkout area is STILL working on the lab order.

Finally, at 2:30 pm, we were free to go...down to the lab of course!

Down to the 3rd floor. Drop off the lab order...sit, wait....wait...wait...what's the problem??? Remember the dummy that took an hour to prepare our lab order??? She screwed it up!! No telling how long it took to straighten that out...she had to come down and fix it.

We finally get called back and find out we also have to do urine! Yay, a bag to attach and then WAIT SOME MORE for pee pee!

I poured the juice to Austin and he finally did the job...I anxiously ran up to the window to let them know they could take the bag off. "Someone will be with you shortly," I was told.

Then came the warm sensation on my leg...was it...why, yes it was! Pee pee leaking on my pants!

Still, "Someone will be with you shortly."

FINALLY, we were RELEASED!!!!!! Done, outta there! Down to the parking garage...at 5:00pm! Just in time for rush hour!

Oh, well, at least we were getting out of that place!

Ah, but the story doesn't end there! What kind of story would it be?

The most exciting part...So, we opted not to pay for the parking before we got to the car. We were just ready to get the heck out of there. We loaded up and made our way to the exit. Of course we had to stop and pay at the machine...there are no actual people anymore to take your money. The ticket won't read. I'm sure Mom is doing something wrong, so I go to the rescue. Still not reading. The people behind us had waited long enough. A girl came to pay for her parking. Her ticket read just fine. Mom pushed the "help" button and we were told someone would be coming to help within 5-10 minutes. Twenty minutes later...no one. They wouldn't even answer our calls anymore! Someone finally came and "fixed" the problem. All we had to do was pay and get out of there. Oh, but, what...it won't read our cards! Three cards later still nothing. All the cash we had was $100 bill that the machine wouldn't take. So. the guy had to escort my poor mother to another machine (in BFE) to pay (with one of the cards that the other machine wouldn't take!).

Then, at 5:45 pm...we made our way out.

Home by 8, 8:30...What a day!

So, to finish...

Thanks Texas Children's...So glad I got to spend my ENTIRE day with you (on 2 1/2 hours of sleep)!

Monday, October 6, 2008

MY Mommy and Daddy!

I need to take a little break from all the seizure talk (good idea, Jamie!)...I want to do something a little different...

Besides my Chad, of course, there have been two people who have bent over backwards for Austin and me. You know who you are, Mom and Dad. Let me tell you all, I really don't know what I would have done without them. I could list everything they have done for us, but it would take forever...I will let you in on a few...

First of all, Mom has accompanied me on some of our Houston visits...two of the most pivotal..the first one (ER at TX Children's) and this past Friday. She has been my "rock" throughout this whole process...gosh, I sound like I'm accepting an Oscar! But, it's so true...she calls without fail every single day to check in on us -sometimes 2, 3 times a day. She keeps Austin when I'm beat and gives him the constant stimulation he needs. She comes over when I'm sad or need a pep talk. She researches for me when I'm too overwhelmed to do it. She toted me to Houston and back, got up at 4 am for us, and dealt with less than pleasant experiences right along with me...all on a moments notice. I don't know of too many other people that would have done that for us. Austin adores his Nana, and I would never doubt why!

Dad has come and visited Austin nearly every week since he was born. If I don't make it to their house he usually makes it here -providing work allows it! He loves to sit and sing E-I-E-I-O to Austin and he can sit calmly with him forever -not typical! He drove me across the state to keep us safe from Ike -even though he hates city driving! And, even though he may not realize it, it really does help when he tries to comfort me. Mr. Austin and Pawpaw...what a pair!

Thank you two for everything...from the bottom of my heart, THANK YOU! As cliche as it may sound, I couldn't do this without you!

Reality check

This is one of my FAVORITES! I guess it's the silly look on his face! He was exactly 5 months old here.
I sincerely started this blog to share all of our exciting news with everyone. If I remember correctly, I started it when I thought we were nearing an end to this struggle of IS. Austin was improving and not really showing any ill effects just yet at that point. But, unfortunately, I have realized that updating you all includes sharing the not-so-happy news along with the grand and exciting. I don't have particularly bad news, just a new insight on Austin's condition to share. I have been debating for several days just how to share this with you all. I do not want to sound sad and pessimistic. I am trying to recollect my thoughts and gain a new perspective so as not to come across as our doctor did -hopeless. With that, I hope you all will bear with me as I attempt to explain this new insight.

First of all, nothing has really changed in Austin's condition. There are some issues that I tried to blow off because I did not want to see them. We did not find anything new at our appointment, we just were more informed and the veil I was using to conceal the unwanted was lifted.

Unfortunately, Austin's EEG showed no improvement. It only further confirmed how much he is struggling with. He has what they call "myoclonic seizures", some of the most difficult to control. I'm not going to get into very much detail on that, just enough to explain what we are up against. In fact, I still consider myself uneducated in that area...although I'm trying to learn more. The fact that his seizures have not been controlled by ACTH, Zonegran, or Keppra is a big concern. It indicates that we may be dealing with "intractable seizures", seizures that are difficult to control with anti-epileptic drugs. However, I have not accepted that just yet. There are still several options we have yet to try. It may just take longer to find that right dose and/or drug. Vigabatrin is still an option, even though the doc did not want to give us false hope that it will work.

Now, the hardest part. We have loads of new testing we will be doing. We had to repeat a genetic test to rule out a genetic disease as the underlying cause (it will take several months to get the results). We had to repeat because the first came back inconclusive. Second, we will also have a repeat MRI to check his brain again. I was misinformed by his neurologists earlier on about this one. It was done while Austin was in the hospital the first time. It came back normal. However, we were just informed that an MRI done that early in life is unreliable. He will also have a lumbar puncture (a spinal tap to test the spinal fluid) following the MRI. I guess those results will determine which direction his treatment will go. These tests are crucial. We want to rule out these possibilities and we do NOT want to find what they are looking for in them. Anything found can negatively affect his prognosis. Unfortunately, I have to add that his doctor implied that we may. I pray that we don't. A truly idiopathic case (meaning there is no known cause) has the best prognosis of all. Especially when the child is otherwise normal (developmentally)...AND has a quick response to meds.

We have two of these factors working against us right now...and one more to be determined -the testing. I have raved about Austin's development, I know. And, his gross motor really is something for me to rave about. But, I have left out all the other details. I have not shared much of my concern about his other skills -except maybe his babbling. He has not made much progress socially/verbally/communicative since he was diagnosed nearly 5 mos ago. I blamed it on his meds. It's possible some of it may be due to the meds, but not all. I wanted to blame it on everything but what it is. Regardless, Austin is taking steps...a truly miraculous milestone in my eyes, and I'm not trying to take away from that by pointing out negatives.

The spasms continue. We increased the Zonegran by 50 mgs/day and decreased the Keppra by 2mL/day and are adding B6 as well. We will have him completely off the Keppra by Friday...it was a joke to begin with, but that's another story...maybe I'll share that one later!

I'm trying not to put a negative spin on things here. Truth is, it's not all as negative as I may sound. There's still a lot to be determined and so much can change over time. It's just far more serious than I let myself believe or accept. I knew that this diagnosis of IS was going to change everything from now on, but what I didn't realize was that it is going to be this hardest battle we will ever face. It is going to take all the patience, persistence, faith, prayer, hope, and love to get Austin through this. I'm not prepared to do anything less than what it takes...regardless of how much hope the doctors think we have.

There is so much more to say, but I think this post is long enough for today. Thanks for all of your encouragement and prayers! I will definitely keep you all posted on how he responds to the latest increase of meds.

Thursday, October 2, 2008

Prepare for a cRaZy day!!

The first time he held a toy!
I got a call from the Epilepsy Center's coordinator a little while ago...good news...bad news.

The good news is that they had a spot open up with an epileptologist for tomorrow. Bad news, it's not Dr. Riviello. I had about 20 minutes to decide whether or not to take it. Taking it would mean losing our January appointment and most likely any future of seeing him at all. I was totally frantic. On one hand tomorrow is four months sooner than the other -and Austin needs to be seen NOW. But, on the other hand, I don't know much about this other doc. I specifically wanted Dr. Riviello based on HIGH recommendations AND the fact that I know he's pro-Vigabatrin. If Austin keeps going downhill with his spasms, I didn't know how much I would regret not getting him in with someone when I had the chance.

Soooo, I took it! I did look up this other epileptologist's credentials beforehand, though. He's the director of the epilepsy clinic AND from Canada (well, he went to med school there anyway). He's got tons of publications and qualifications. What went through my head when I saw Canada was VIGABATRIN! Maybe since it's the front line treatment there for IS, he has some experience with it. Our pediatrician spoke very highly of him too, so I decided to take my chances.

The clincher though is that this doc requires a new EEG. The coordinator scheduled us for a 10 am EEG and 12:45 pm dr appointment. Then I get a call back from him. The EEG dept needed to verify our insurance so I was transferred to them..."oh, we're sorry for the miscommunication, but the EEG needs to be done at 8 am...and you need to report no later than 7:30 am..." WHAT??? We just did that in August, and let me tell you people, I swore to NEVER do that again. Not so bad if we lived in Houston...but it's nearly a 3 hour drive! We even got a hotel in Houston and left the night before and it was still a nightmare. Austin screamed THE WHOLE TIME, and we were so zonked we couldn't see straight! Now, there's a slim to none chance that there's a hotel even remotely close by thanks to our friend Ike that blew through! Oh, AND let's not forget that the dr won't even see us until nearly 1 pm. How long does an EEG take??? Not much longer than an hour! Oh, we will have some time on our hands!

BUT, I'm thankful that we are getting in at all! SO THANKFUL!!!!!!! I will let you all know how it goes!

Wednesday, October 1, 2008

My love affair with EMAIL! ;)


Those of you closest to me and that have known me a while, probably know that I seem to have lost a little of my backbone over the years. For reasons still unknown to me, I tend to be much more sensitive these days to people's reactions, judgements, comments, perceptions...oh the list goes on! This situation we're in with Austin has been kind of like my moment of truth. Can I overcome this self-proclaimed handicap and get my baby the treatments he needs and deserves? Well, I have yet to confidently say that the struggle is over. But, I have found a tool that is helping me!

EMAIL! It's truly a wonderful invention! There's not that person-to-person awkwardness, no questionable tones to decipher, and I can spill my guts without hesitating...AND, I've got my computer to hide behind!

I've never been known for my people skills, but it's gotten even worse lately. When I talk to doctors, I get distracted by my next question or forget my questions altogether, I let the conversation get diverted, and I NEVER remember clearly what has been said...because I'm trying to remember to remember everything...and I forget!

Email lets me say what I want to say and get a response I can refer back to! Genius!!

Don't even ask me why it took so long to do this!