Monday, December 29, 2008

Monday, Monday







Even though I'm not "technically" working, I was so dreading today anyway!! Chad going back to work...the end of the holiday weekend...resuming the normal day to day... Yuck! I didn't do anything special over the weekend...just lounged in my pjs and played with my Christmas goodies...but man, was that nice!

I had tons to do, but I did it a little at a time...I organized my kitchen (somewhat) for all the new kitchen stuff (I racked up in that department!! -my dear husband spoiled me rotten -not to mention my mom and mother-in-law!)...I reorganized our closet...Chad totally remodeled it in one day and we doubled our space! I played and played with Austin and all of his cool new stuff...a rocking horse from Santa, a big stuffed (and safe) puppy from Grammer and Pawpaw, a ball pit from Aunt E. He also got a toy from his Aunt Jill that he actually tries to work...and those little beanbags that came with the toy from Nana and Pawpaw...he loves to squeeze those things! He gets totally loud with those! But, as usual, his favorite thing is still walking, walking, walking!!
I was hoping that he'd be a little more excited about all the Christmas happenings, but I think the vigabatrin increase had a lot to do with his moods. He just wasn't up for much at all. After a couple days, he seemed to improve mood-wise, but we're still seeing lots of seizures. His clusters are way way down, but the "slams" are still going strong. The helmet was not much help since everywhere we went still had hard floors and we couldn't let him walk freely. That probably had a lot to do with his mood too. By the weekend, he was happy and squealy as usual!
Oh, man...just got off the phone with our epilepsy clinic...we had an appointment for Jan that was cancelled by them a while back and rescheduled for Feb 27 -which I thought was ridiculous...then, the other day, we got a letter in the mail saying that the Feb appt was going to be cancelled as well. Now, the next available appointment isn't until June 30! That is totally nuts! I guess we have no choice but to find a new specialist, huh? I tell ya, the drama with that place never ends!
Anyway, I hope you all had a wonderful Christmas! I'm recovered somewhat physically...but my house is a different story! I have a nice and neat closet and kitchen though! :)

Tuesday, December 23, 2008

Vigabatrin's last chance...











I've been quite the slacker lately, haven't I??

I'm sure you all know how that goes though...the holidays (and Austin's lack of sleeping) have kept me tied up. But, I've been trying to enjoy the holiday movies and decorations too!

I'm assuming it must be the vigabatrin making him restless at night. It's almost entirely predictable now...he conks out easy at first...wakes up about 45 minutes later...finally goes back to sleep after about 2 more hours...then up again by 3:30-4:00 am...til 5:30-6:00 am. It's sadly reminiscent of the ACTH days...although not quite as bad (thankfully!).

We've given the last increase plenty of time to work, but it's just not going to. We're increasing one last time starting tomorrow. Either that will help, or we will probably start to taper him off it entirely. We're clueless as to where we'll go from there. There's the good ole keto diet...but Chad and I are not in agreement on that one. There's Detroit...but that's not a treatment, only a chance to find out if we will have new options to consider down the road. There's more meds, but I'm so sick of AEDs I could scream! It's overwhelming right now, so I'm just trying to focus on getting through the holidays and making the best of it all.

This is the first time in about 7 years that I haven't had to work like mad through the holidays (I don't count last year since Austin was a newborn and I was still recovering from the C-section! -I didn't exactly have time on my hands then!). It was so wonderful this year to finish shopping and wrapping in time to actually contemplate baking! I just need to get that started, huh?! :)

I'm certainly excited to tell you all that Austin's been making some great new sounds! He's not quite babbling but I think he's getting there. When he walks he loves to Yee-yee still and now he's added Gee-gee to the mix! He's gurgling again and I just get so tickled listening to him!

As much as I'd like to, I'm afraid I probably won't get a chance to post again until after Christmas...I'm just trying to be realistic here! I've got to get busy, busy...there's our regular hectic evening schedule tonight, last minute shopping on top of that...then baking and a couple more gifts to wrap! Is it crazy to think I can actually get that done by morning??? LOL

Of course I will be checking in as soon as possible and hopefully posting great new Christmas pics!


Merry Christmas!!! Love you all!!!








Thursday, December 11, 2008

Who'da thunk! LOL Snow in SE TX!







Snow and Helmets...


The only good thing I can say about Austin holding a sleep protest last night was catching the record-breaking snow out my window! I think the last time I saw snow accumulate here was when I was about 7 or 8 years old...We get some flurries every now and then (last I remember was Christmas Eve 2004), but nothing that sticks. So, I was excited that I caught it before it melted this morning. We got up late, so by then, most of it was melted already...and at noon, nothing but water dripping except for the small amount still left on my windshield. I felt like a little kid last night...I ran out to touch it and had to wake up Bailey to go check it out! She was freaked! Like, what's all this in my yard? She ran all over sniffing and inspecting. Cute.

The helmet finally made it in on Wednesday. I drove in a massive down-pour to get that thing! It doesn't look as bad as I was expecting, but it's still not exactly discreet. It doesn't have a face shield and he still can't walk on the hard floor or stand over hard toys, but at least I can let him go on the carpet again. You should have seen that face when I put it on him and turned him loose! The biggest smile you've ever seen! He made so many new sounds out of sheer delight! He's hooked on Yee-Yee-Yeeeee now. He just walks around in circles babbling and screaming!
We've finally reached our target dose of 1000mg/day. Unfortunately, we have yet to see an obvious improvement. It's only been two days since the increase, so we're still trying to be patient. Since Austin is quite a big boy, I think there's a little wiggle room on the dose too. He's still not at 100mg/kg yet. We shall see....

Friday, December 5, 2008

Just around the corner...

I think the above is the picture that made it in the cards last year...
And the one below was the intended...imagine 30 copies of the wrong pic!! :)


With the latest cold front that blew through and finally getting our tree up, I've had no choice but to get with the excitement of the holidays. How can I not with the chill in the air and all the red and green in the house?!

I LOVE the day after Thanksgiving...it's when I allow myself to break out the Christmas cds...I have two faves...Jewel, of course (Al, I'm still faithful to this one -after, what, at least 8 or 9 years and 3 copies later!) and my Sarah, which I think I got two Christmases (lol, sp on that one?) ago?? I think. I love some Bing, but sad to say after buying two copies, I can't find either of them! I'm a traditional freak, so I can ONLY listen to them between Thanksgiving and Christmas...after Christmas, in the case they go not to come back out til next year!

My mind is turning with ideas for the Christmas card pics...Last year we took some last minutes by the tree...I was definitely not a good planner with a colicky 2 month old at the time. I even think the cards came out after New Year's! LOL I'm still cutting it close, but as long as they get out by Christmas this time, I'll be satisfied!

I can't divulge too many details, but we got the outfits (yeah, plural for BOTH our babies) a couple weeks back...and it may be a little Grinch-y...hmmmm. That could change..we'll see.

I must, must, must be realistic...an ashamed, costumed dog and a teething 13 month old...I'm already thinking of Plan B's. I know improvisation is inevitable! :)




By the way, helmet should be here Monday! :)

Wednesday, December 3, 2008

Hospital talk -the final straw

Austin in action!




Between the ongoing arguments with our epilepsy clinic and the never-ending helmet issues, all I've done the past two days is research hospitals and specialists...I'm so consumed with the need to get Austin the best care possible that I have barely held a conversation that doesn't involve IS!

But, I've finally made up my mind...we are done with our current epilepsy clinic. I tried to imagine what this ordeal would be like if we had a team that cared about us and the outcome. Not having to worry about fighting with them or riding their tails would take so much off my shoulders. So, thanks to my mom, we now have an impressive list of new clinics and hospitals to check into. Of course, they all boast qualifications and dedication, but Chad and I know what we want and know that the paper qualifications can be deceiving. Look at our current one...#5 in the nation for pediatric neurology...you'd never know it by dealing with them. It's not just because they haven't "fixed" my son by now, but they certainly don't act like a 5th ranked provider. Maybe their rankings have gone to their heads and they no longer have time for us. I think that patient dedication and compassion is seriously lacking there and their BIG doc's are stretched too thin. It doesn't do us much good to have a BIG doc if we can't see them or talk to them. The nurses guard the phone and screen and filter our questions and concerns...not to mention them giving me their condescending responses and advice.

So, yesterday morning's conversation with them was the final straw. I had reached my limit of insensitivity. I told them exactly what I thought of them and their "procedures"...I only wish I would have "went off" on someone that mattered there! I'll spare you the gory details of the call and just leave it at they gave me the confirmation I was looking for in my decision to change hospitals.

We will all be much better off with a team that cares even if we have to drive across the state to see them!

I'm just waiting for Austin to get up from his nap so we can go get our helmet ordered. I wish we could have done this sooner because we'd probably have it by now. I had no idea it would be such an ordeal...I'm excited to get it though so I can relax a little with him. He'll be soooo happy to get back out on his own and walk! There's no telling what he'll be able to do once I ease up a bit. I know he senses my nerves...I just know it. He'll be so playful and proud, but as soon as I run up to him and try to guard him he's not interested in much anymore. Now, I won't even let go of his hands...but, that's about to change, I hope!!

I'll keep you all POSTED!!

Monday, December 1, 2008

Still waiting




One more day until the next increase...

Will it be the dose that works? Hope so...

We're still fighting these big drops. Man, if it wasn't for that, this whole mess would be soooo much easier to deal with. But, all we can really do is wait it out and try to adjust our lives around it. Like the helmet or padding this and that. And pray that this will all be over soon.

But, you know, I really have to say that Austin's smiles make this battle worth fighting. He is such a happy boy despite everything he's been through. All it takes is a little bit of floor space and he's good to go! Squealing and laughing and all his"AAHHs" and "EEHHs". I can't help but laugh out loud whenever he walks.
The walking has been limited these past few days. I tried to create a temporary head support until we get the helmet, but I still fear that it's not enough. It's really hard for me to just let go of those little hands. That is ALL he really wants to do, so holding on is painful...and tiring because he wants to go anywhere and everywhere...but my back doesn't! I keep telling myself that it's just temporary...it's just temporary. Either the vigabatrin is going to do it's job, or the helmet will protect his little head. I can't see myself letting him go on the hard floor even with the helmet, but at least I will take more comfort in him walking around his playroom. And I know he needs that. He's such an independent little boy!

I hope you all didn't eat as much as I did over the weekend. I think I had turkey and dressing for 7 meals! I believe I'm good 'til Christmas! ;) But, man, was it delicious! And Austin thought so too. It's very rare that he will accept textured food. We're still on the good ole Stage 2's. When I try to sneak in a Stage 3, he lets me know that he's on to me...But, I guess the taste was worth the funny feeling in his mouth. He chowed down on dressing (mixed w/ a little cranbury sauce), dumplings, sweet potato casserole, broccoli cheese casserole...I couldn't believe it! And with a repetitive "Mmmm", with every bite! Of course I had to mash it all until it was practically puree, I was still impressed to see that he took it as well as he did...and enjoyed it! Grammer and Nana, y'all did good!

Wednesday, November 26, 2008

Unbelievable!

I just couldn't resist the urge to tell you all what ended up happening with the epilepsy clinic and the helmet ordeal...

I decided yesterday to give them the benefit of the doubt. Instead of stalking them by phone yesterday wanting to talk to someone, I tried to be patient...to see if they would actually call me back. Well, of course they didn't yesterday, so I kept my cell on the nightstand last night in case of an early am call. Still nothing, so I called back at 9:30.

The lady who answers looks up our info and says, "Oh, she mailed you a script for the helmet."

Seriously??

Seriously?

Unbelievable...

The last thing I was told yesterday when I called was that someone would be calling me shortly to discuss our options in helmets. Hmmm. I guess they just assumed that I would wait patiently while my child is constantly hitting his head and just figure it out when we got the script in the mail! That still doesn't help me much.

I could go into a lot more detail on this one and why it's making my skin crawl, but I think you all get my point without all the nonsense.

Bottom line...

Those people are unbelievable! Eeerrrr.

We gotta get a new team!



BUT, besides all that...

Austin is doing well. We had our first increase of the vigabatrin last night. I haven't seen too many spasms...Maybe 3 or 4 so far. It's close to 11 am now, so we will see as the day progresses. So far so good though!

I think he's cutting several teeth right now which is making him SUPER loud! He's trying to tear into everything in sight! So funny to see him try to stick his whole fist in his mouth!

Unless something major happens between now and Friday, I doubt I will have a chance to get on here much. We're doing 2 days of Thanksgiving! Why didn't we start doing this sooner?? Oh, wait because of me! Miss traditional (me) just couldn't stand to have turkey on any other day but Thursday! Now, I'm thinking how much easier it's going to be on everyone to divide it up. No having to eat and run on to the next family!

So, Happy Thanksgiving to everyone! And forget about those diets!!

Tuesday, November 25, 2008

Bubble Boy

Yet another boring-post-day. Nothing...Nada.

Spasms are a little better amount-wise...but intensity...Whoa. He hasn't walked solo since about 11 am. He had a slam on the carpet and that was enough for me. He cried, I cried, and our social worker almost cried. It just breaks my heart knowing that it's dangerous for him to do what he loves most of all. Walking.

So, I got busy trying to find a protective helmet immediately after the social worker left. I called the insurance company first. Then the durable medical supply places. Then our epilepsy clinic (for recommendations). Then got online to check them all out again. Everything is set for when we actually choose the one we want...After we get a recommendation and certification from the epi. So, surprise, surprise, that's the only thing holding us up! No call back...as usual.

I'm giving it until noon tomorrow and I'm going to use my best judgement to order one. The longer I wait on them, the longer it will take to get the ball rolling. I probably know better what he needs anyway. I'm the one who knows exactly what gets impacted on falls...I just thought it would be helpful to have someone with experience recommend a good one. There's several to choose from.

I'm not giving up yet on the vigabatrin, but I'd like to be prepared if it doesn't work. I've already cleared out all the "problem toys" that make me a nervous wreck for him to play with. I thought that would calm my nerves a bit. And it did...until he started hitting his head on the floor so hard. Now, he's back to being "bubble boy". That's what I need...bubble wrap for every hard surface in the house...hmmm.

Anyway, he's been such a sweetheart today despite Mommy being so controlling! I've been getting tons of smiles and giggles! He's coming around in that department. Much more interactive. So good to see...I missed that so much!

Madie and Trev, I'm thinking of you two!

Monday, November 24, 2008

Thank you!

Just a quick post to thank a couple people who have kept me sane today...

Mom, thanks for the encouragement to keep it going despite the fear. Not one tear shed since we spoke.

Jen, thanks for sending me to Connor's site. What a fighter! What a strong Mommy she is too. It made me realize how much I need to focus on what he IS doing. My Austin IS rolling over...he's WALKING! He's not seizure free, but he's an active, happy baby despite all the seizures. Yeah, he's delayed in a lot of areas, but he's starting make a little progress here and there.

We WILL make it through this. If vigabatrin's not the one, we will keep searching until we find THE ONE.

Maybe tomorrow

Sorry so long since an update. Honestly, I haven't really been in the blogging mood. The new pressure of the vigabatrin trial has been seriously taking a toll on me.

I can't say one way or another if anything is happening yet. One day spasms are low and he's in a great mood...the next is the complete opposite.

It's been 6 days so far. Nothing to celebrate yet...I'm trying to be patient and remember that 3 days, 5 days, and even 6 days is waaaay to soon to start making assumptions. But, there's still a part of me that's disappointed that it's not making any difference yet. I wanted so bad for him to be one of the ones it helped in 2 days. If anything, after 2 days they were worse...then better by day 4. Now, today, they're worse than they've been since we started. 67 in 2 1/2 hours. That's with a baaad cluster of 55 though.

So, it's too soon to report any major news. Every day is different. That's why I didn't update when he only had 20 one day (which for some kids that would be a bad day...for him it's pretty good).

We are trying to take it one day at a time, and this day stinks.

Maybe tomorrow.

Tuesday, November 18, 2008

The Million Dollar Question




I really don't remember exactly how it started. The debate Chad and I got into over immunizations and the link to Infantile Spasms. Did the DTaP play a part in Austin's seizures? We may never know. But, I certainly have my own ideas...whether they'll ever be confirmed...don't know.

I don't necessarily think that it caused it. I do believe it triggered it. I wish I could say that I knew for a fact the vaccinations caused it. Then, I would have someone or something to blame it on. But, I don't know that, so for now, we will just have to continue to be cautious with future vaccinations. Like I said in an earlier post, we did not get any one-year vaccinations. We may end up getting all but DTaP later, but I doubt we will ever get pertussis again.

Of course I want the secret to curing my baby's seizures more than anything. But, what I also want to know that would maybe put my spinning mind to ease, is a cause. Any cause. I want to know why my perfectly healthy, happy, developing six month old suddenly started to seize. Why our lives were suddenly turned upside down and inside out. How one day he was perfectly fine...and the next a child with epilepsy. We may never know why, but that's okay...as long as it stops.

So, with that being said...We have a new drug in the mix as of today! Yep, we FINALLY got it started. We're starting slow and going to work our way up to a steady dose within about three weeks. I'm holding my breath until then...

Thank you all for your support and encouragement! It was nice to hear from Janna and Alana! Thank you two for your prayers and sweet comments! It was great to hear from both of you...it's been years! Hope you are both happy and doing well!

Hopefully within the next week or so I will be able to report a dramatic decrease in spasms! Until then, please keep little Austin in your prayers. We really need this one to work!

Monday, November 17, 2008

Beyond Words






It's here!!!! The vigabatrin is here!! (Ali, you were right!!!)

Now, the only problem...getting the epilepsy clinic to return my phone calls! I've been calling since 11 am this morning to get them to fax an updated script to our pharmacy...insurance won't cover the Zonegran refill until they confirm that the dosage was increased by the doctor. That's about right. I've called them about 6 times today. And just now, I realized that it's getting near 5 pm...I hurried to call them again...they're closed! Go figure. No word...nothing. I told them when I called the last time that I needed dosing instructions on the vigabatrin too. What kind of hospital is this? I was simply needing a nurse to call me! It takes like five minutes! C'mon!

Ridiculous...
But, I will definitely keep you all *posted* on this one...If it's gonna work, I hope it works fast! Man, wouldn't that be awesome!!! I'll let you know...IF I ever hear back from Houston!

Saturday, November 15, 2008

Antsy, Pantsy






Okay, now...c'mon...


We're going on a week now...


What's the hold up?


Surely it's not STILL sitting in NY!


I'm crossing my fingers that USPS is merely failing to update tracking info for the vigabatrin that's supposed to be on it's way to us. No news since it arrived in NY on Nov. 9. I'm not familiar with international shipping and how the customs procedure works...Hope there's not a problem there.

Al, with her optimism, tries to reassure me that it's only a technical glitch...that it's on it's way and will show up at my door any day now.

I can't take the suspense any longer! Now that we have other avenues to pursue, I'm ready to get this stuff going. I'm dying to find out, once and for all...if this is it. THEN, I will know whether or not to cancel the MRI in December and make an appointment in Detroit. If OUR hospital can't get us in for two months, I can't imagine what the wait must be like for Dr. C's! BUT, that's only if the vigabatrin doesn't work. SOOOO, we need that stuff NOW, so we will know by then. These seizure meds are always a test of patience to give them time to do their thing...it takes dosing tweak-age, time, and sometimes even creative cocktails of different meds before you really know. I just hope Mr. Doom and Gloom ES guy knows his vigabatrin!

Friday, November 14, 2008

AH-HA!

I just wanted to give you all a quick update on the latest...



For some reason I just had a sudden urge last night to email the most sought after neurologist (for Infantile Spasms) in the world for his opinion on my hunch. I left out no details as to why I've been suspecting a connection with Austin's spasms and the left arm dominance.



And within hours I got word back...Can you believe that? Probably the busiest pediatric neurologist in the country responds to me quicker than Austin's own doctor (who really uses his nurses to respond).



He agrees with me. He believes that what I told him does suggest a focus. He said that would explain Austin appears to have a sensation in his right hand. Why the left arm is dominant. Why there is movement on the right side during some seizures.



Although nothing is confirmed through testing, I just feel a huge weight lifted off my shoulders. Nothing has changed, but somehow I feel better. Maybe because I don't feel so much like a lunatic anymore. This man agreed with me. Our nurse would barely even listen to what I had to say when I called about it last week. I seriously think she used her own judgement to determine what to tell the ES and that was that. When she called back, her response was no where near relevant to my questions.



I'm still in the process of collecting videos of Austin's seizures and writing a letter to send the ES. I want to know, without a doubt, that he gets all the accurate, unfiltered information and can even see for himself (as opposed to the nurse deciding what SHE thinks is important). Since I have gotten validation from the IS guru himself, I will know that if he dismisses me, I need to dismiss him!



Dr. C recommends that we go ahead with the vigabatrin. If it works, nothing more should be done, but if it doesn't, he wants to evaluate him in Detroit to see if he's a surgical candidate. Surgical? Scary, I know. I've tossed and turned over this one many times...even though we've never even discussed surgery as a possibility. But, I'm sure many parents dealing with this must secretly hope their child could be a candidate. That would mean possibly an end to this nightmare...a possible cure...possibly a relatively "normal" life...Could I do it? Could I let someone do that to my baby? If it meant his chance for seizure freedom AND a normal life...



That's not a decision that I can give you the answer to now. Even after all the articles, books, and success stories I have read. The fact is, EVERY case is different...which means different associated risks for every child. I can't even begin to fathom what an excruciating decision that must be to make.



I am just praying that this vigabatrin works, and we won't even be faced with such a decision.



We will just have to cross that bridge when we get there.

Wednesday, November 12, 2008

Epilepsy Awareness Month

I found this on one of the blogs that I follow.


Dear Friends,



November is Epilepsy Awareness Month and we need your help! As you know, we're asking all Americans to sign our epilepsy petition (http://www.epilepsypetition.com/).



Our goal is to collect 100,000 signatures by December 31, 2008 to present to our elected leaders. That would definitely send a message! So far, we've collected 10,000 signatures online.If everyone that signed our online petition collected just 10 signatures, we'd reach our goal! Will you take a few minutes and collect 10 signatures in the next couple weeks and help us reach this amazing goal?



Collecting signatures is a great way to raise epilepsy awareness.The more we talk about epilepsy, the more we educate the public. So come on! This isn't going to happen by itself! We need to make it happen! Collect some signatures and help us make a difference!



You can obtain a copy of the petition by clicking here .



If you have questions, comments or want to get more involved please contact me at the email address below. Many thanks for your support!



JoeJoseph
LaMountain
Director of Grassroots Advocacy

Epilepsy Foundation
8301 Professional Place
Landover, MD 20785

jlamountain@efa.org

It's on it's way!











Man, I was on such a roll last week...three posts in three days! What happened?! LOL


Well, doctor appointments, more eye injuries (my own this time), and (sigh) the never-ending computer issues happened! :)


I took Austin in for a follow up with the gastro doc...we saw the nurse practitioner -which was fine because I could actually understand her! We're going to stick with the yogurt and get another stool sample to make sure the bacteria is gone...it's one of those highly resistant little boogers. Then, a follow up in 6 wks. She also suggested we try to gradually switch Austin to a milk based formula (from soy) before introducing whole milk. He's not digging that one so much! I have to mix it in with his soy or he gags. yuck...


I think I mentioned in my last post that I still hadn't "seizure-proofed" Austin's crib. Well, as you can see in the pic, Mom and I finally came up with a quick fix...egg crates and strips of fabric! It's obviously not completely seizure-proof, but it's much better than before. Since it's a sleigh-type crib, the wide (and solid) strip of wood in the front made me an absolute nervous wreck. When he would wake up at night, I could just picture him standing there holding on and having one of those slams right into it. It got so bad to the point where he spent most nights with me on the couch or in my bed. But, I'm happy to report that since Nana fixed him up, we've been sleeping through the night again...most nights anyway! :)



I'd also like to mention that I received an anonymous comment about opening Austin a PayPal account for medical donations. It never crossed my mind and I wouldn't even know where to begin to do that (I'm technologically challenged!)...But, it really touched my heart just knowing that there is a supporter out there that thought of this and wants to help my Austin. I'm so thankful for all of these people (even if I don't know who you are!) that pray for us and offer their assistance everyday. It's the support system that cushions us during this difficult experience. I've received encouragement and prayers from people I've never even met. I'll never forget the day I received that special card and prayer in the mail right after Austin was diagnosed. People that I had never met (who learned of Austin's diagnosis through prayer group) from all the way in Tennessee, gathered to pray for my family. Then not too long after that, I received a precious hand-made quilt from the same family. I remember that day vividly. Man, I was distraught over everything. I was realizing the ACTH wasn't working and probably not going to, Austin's spasms were through the roof, and I was an emotional basket case! Just as if He knew what would lift me up at that particular moment, that package and letter came. It brought tears to my eyes. That is true generosity. We also received another prayer quilt from a more local group as well. Just beautiful. It may not seem like much to the people doing these things, but to us, it's the world. I seriously can't imagine how we would be coping without the encouragement and motivation we've received from everyone. Thank you. Thank you. Thank you!


_________________________________________________




I am anxiously awaiting the arrival of the vigabatrin...which, as a matter of fact, I just learned has made it's way to NYC from the UK! I tell ya, I can't quit checking for tracking updates! I had a dream last night that it worked. A sign? Maybe. Or possibly just my obsessing over it? Probably! I'm trying to be realistic about this one. Although I'm eager and excited to get it going, I'm not going into it as naive as I was with the ACTH. I didn't even entertain the thought of it not working...and it was beyond devastating when it didn't. I know this time around that it might not be our "miracle drug". But, what do I have if I can't at least hope that it is "the one"? Hope is what keeps me going. I search endlessly for signs that it's going to be over soon. In reality, they may not really be signs... But, in order to stay positive, I assume that they are. It gives me strength and energy to keep fighting this battle. An example...I have a 3-D ultrasound of Austin framed in my living room. In the background of his face, it looks like another face to me. That's my comfort. I look at that when I'm sad or overwhelmed or feeling negative. It reminds me of an angel watching over my baby. It gives me hope.





Wednesday, November 5, 2008

An eye sore...



The culprit


And with all my "safety rigging", man, what an eye sore -literally.





We had yet another accident today. After last Friday's cut on the eye, I was confident that all of Austin's gear (besides his crib) was now seizure-proof. The lovely walker in this pic (yeah, look harder, it is a walker -kind of hard to tell with all my add-ons) has been quite a challenge. With the attached toys on the tray, it took me weeks to figure out an appropriate "fix". The hard plastic toys (under the attractive purple hand towels -lol) have been a problem since the head drops started. Short of sawing them off (which would leave jagged edges), they aren't going anywhere, so I sought out a way to wrap them for protective padding...something that Austin couldn't pull off and that wouldn't pose another risk. The hand towels and hair scrunchies worked like a charm...until today. Somehow he managed to hit it in just the right place, causing another cut on his other eye. I wanted to cry and scream right along with him, but I miraculously kept my cool. I'm just so tired of worrying about injuries! I found some protective helmets online last night. Chad and I are considering getting one. They are definitely not cheap, so we are going to wait and see if the vigabatrin helps any before buying one. I'm not sure if our insurance would help in paying, but I'm hoping we won't need one at all soon.
To follow up from yesterday's post...I finally got a call back from the nurse this morning. Well, she called at 4 pm yesterday but just to get the info to talk to the doctor. I didn't get the call back with the doctor's opinion (or lack of opinion) until this morning. What a joke. I seriously don't think my questions and comments were relayed accurately. All I got from them was the appearance changes over time. Another bit of garbage she told me was that it sounds like tonic-clonic seizures to her. To her? Who cares what she thinks! I'm not paying for her opinion! Anyway, I said I caught some seizures on my cell phone and wondered if I could email them...Nope. I have to send them by mail. She said not to email or fax any more than we have to to limit personal info "floating" around. UGH! No, I think it's to make just as difficult as they can on the parents. I'm going to buy a fax machine today so I can fax my questions and have the doctor read them himself. They're just going to have to deal with it. I'm also going to "mail" Mr. Epilepsy Guy a letter just as soon as I have time to type one! How am I supposed to address my concerns when we only have appointments every 3-4 months? They certainly don't give me adequate info between visits or keep communication a priority. I hate hospitals!!

Tuesday, November 4, 2008

I got some kisses! xoxo


"Checking" his hand in both of these...



I got a BIG, slobbery smooch last night from my baby boy! It's the very first one I've gotten in probably five months! He gave Chad about 4 or 5 the other day, but when it got to Mommy's turn, Austin started being a cranky little crab, leaving me sugar-less. It didn't bother me so much because just seeing him give kisses to anyone again brought tears to my eyes. It reminded me of when he first started doling out smooches months ago...he'd stand up in my lap, grab me up by my cheeks (which could be painful little pinches -but totally worth it), and plant a big wet one on me! He stopped doing that for so long...I missed it more than you can imagine.

I'm impatiently waiting right now for someone to call me back from the epilepsy clinic...I'm starting to piece some bits together that could potentially be extremely significant. I know I've talked about Austin and his preference for his left arm. It's becoming even more obvious that there's definitely something to this. I've wondered since I first noticed it a month and a half or so ago, if maybe there's a focus that can be identified. For those of you with limited knowledge of seizures (that's me too -but I'm learning a little more), there's two classifications: partial and generalized. Within those classifications there are different types (too many to list). Austin's seizures are considered generalized myoclonics. Generalized meaning the whole brain is affected, and myoclonic being the type of seizure ("muscle jerk"). It is hard to determine the focus (where in the brain the seizure originates) in generalized seizures, probably because it spreads so rapidly throughout the brain -as opposed to partial seizures that involve only certain parts of the brain. I'm certainly not going to go through all of the details because it is very complicated...I just needed to explain the basics so everything else will make sense. Generalized seizures are more difficult to control, particularly myoclonics. If an affected area in the brain cannot be found, then the treatments are limited -namely surgery. With Austin, I'm starting to wonder if maybe there's something to be found in the left side of his brain (left side of the brain controls movements on the right side of the body). I also just read that speech is typically located on the left side of the brain as well. He had a looong cluster day before yesterday...only his right arm and right foot would move. He's always, always, always "checking" his right hand. He brings it up in front of his face and holds it with his left as if he's getting a some sort of sensation. Not only that, he tends to prefer using his left arm/hand for everything. Sometimes he keeps his right arm plastered at his side as if can't use it at all (I know that's not the case because he does use on occasion). All of that combined with the fact that we first started noticing him grabbing his right hand around the time we first noticed the spasms. I did not connect the two until very recently. We thought it was cute, him grabbing his hand...it looked like he was checking his pulse! I remember him doing that in the hospital and he had just started doing it. Only when I started thinking something was strange about it, did I realize how long it had been going on. Quite a coincidence...Anyway, I didn't mean to get into so much detail. I'm just soooo curious as to what this may mean. It could give us the insight we need to explore certain areas. It could be Him giving us a direction. Or...I could be misinterpreting and it could mean something devastating. I certainly don't know enough about the anatomy of the brain, or epilepsy for that matter, to draw my own conclusion. Call me back people! I just want to know what this doctor may suspect...some possibilities anyway.

Well, there's my ramble for the day. I keep checking Madie's blog to see how the new meds are working...I'm starting to get concerned...no post in nearly a week. Oh, I hope it's helping...Post Jamie!

Monday, November 3, 2008

News, news, and more news!

Hard to believe this was a whole year ago!

Mommy's "trick"? Dangling "treats" over their heads! ;)
Austin and his Bailey!




Well, we didn't do it. No one-year vaccinations. I just couldn't bring myself to let it happen. There are just too many unanswered questions for me to take that risk right now. The pedi thinks I'm risking more by NOT having him vaccinated, but it's not his risk. He doesn't have to live with the consequences they may present. I didn't flat out tell him exactly what I think, but I bought us some time to mull it over anyway. He was completely supportive about the DTaP, but urged me to reconsider the rest. I am. But, I'm in no hurry. All the reasons for me not go ahead with them were just too overwhelming...100+ spasms/day, current bacteria infection (I'll get into that one in a sec), recent compromised immune system from ACTH, plus the controversial links with DTaP and IS and autism and MMR. Not only that, but I know the stress from the vaccinations and the side effects would have a dramatic effect on his already out-of-control spasms. So, we opted out. For now. I will discuss it with the epilepsy specialist, but I'm already convinced he will advocate the vaccs as well. Don't get me wrong, I absolutely do not want to put Austin at risk for the diseases that these vaccines prevent, but I seriously feel (not just from research but from my Mommy gut too) that I would be putting him at even more risk at this particular moment by proceeding.

On the same day of his well visit, the poo mystery was revealed. It is a bacteria, but not the lactobacillus gg. It's clostridium difficile (or CDF for short). It can be caused by antibiotics or from person to person. My money is on the antibiotics since the symptoms started just days after the antibiotics. We're going to treat with yogurt for now and possibly medication later if it doesn't resolve soon. The gastroenterologist did say that the fact that his immune system has been compromised, would greatly increase his chances for developing this bacteria. It only further confirms to me that he may not be ready for such a large dose of immunizations.

Oh, I almost forgot...we're starting vigabatrin soon! I'm anxious to get it rolling, but scared at the same time. It has been my safety net, so to speak. Through all of our trials of meds, I've had vigabatrin in the back of mind to keep me positive. I know we haven't completely exhausted our options, but I've been looking to this one to be our miracle. What if it doesn't work? Then what? Topamax? Ketogenic diet? Surgery? Besides surgery (if that's even a future option), I just don't have the high hopes for those as I do vigabatrin. We are having to order from the UK so I really don't know when we will actually get started, but I'm praying it's the last one we will have to try.
Austin desperately needs some relief from these seizures. I can't just let him go and enjoy some of the little things that make having a child so rewarding. I'm always wrapped up in safety issues and counting spasms. I know there will always be safety issues with any child, but how I would love to just let him be. Just let him roam around and explore without worrying that he's too close to that table or the hard kitchen floor. Even toys below him present dangers. Just last night, he was standing over his activity table playing. I was so worried he would have a spasm and hit his head. But, at the same time, I was so proud that he was actually interested in playing with it that I let it go. Just as I feared, he slammed into it leaving a bright red knot on his forehead. I think I cried more than he did. What a tough little boy. He fussed a little, but I made a bigger deal about it than he did. He just keeps on going...always. He even fell in his play yard the other day and cut his eye (yes, I only thought that was the safest place for him). He wailed considerably and understandably...but once he got his Mommy and paci, he was fine. Obviously, it wasn't long before I completely wrapped and padded those corners before I would put him back in it! He's okay though...it was just a small scratch. But, that's not the point. I'm praying that if nothing else, these spasms will at least lighten up a bit so he can have a little more freedom to experience "normal" activities for a change.

One thing he is doing quite a lot of is walking, walking, walking! He's still not running around or anything, but man, he's really starting to get around. He can probably take up to 15-20 steps sometimes! Then, there's times where he can't seem to put one foot in front of the other. He's certainly getting his fair share of practice though! We "walk" around the living room the majority of the day now. Of course, I've got a tight leash on him to keep him from hurting himself, but hopefully, I can lighten up soon.

Oh, I'm remembering all kinds of new stuff to tell you all! I guess I need to post more often to keep them shorter! At his well visit, the pedi suggested we stay on formula for now since Austin's still not eating enough solids...man, how I was hoping my formula buying and mixing days were over! BUT, he's starting to pick up the pace a little now! I can't believe how much more he's been eating over the past few days...I think yesterday he took down nearly 4 jars of baby food, a container of YoBaby yogurt, AND some potato salad! He was loving that potato salad! That's one of the first times I've been able to get him to eat table food, so that was a big step for us! Big boy milk, here we come! :)




Tuesday, October 28, 2008

Bittersweet












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!!!


Stepping!

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...


WRONG!!!


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.