Hands On

This week has been filled with exploration, joy, and renewed hope.

Austin has been functioning (uh, that's the word our therapists use, I like "working") more toys than I've ever seen before!

And it's not just making the toys function...it's the level of interest he's shown. Period.

A few months ago, our OT timed how long it took him to initiate play with a toy. Seven minutes he roamed around aimlessly.

It's more like seven seconds this week!

Not only that, he's manipulating them in such a purposeful manner. A push of a button is sometimes accidental for him. But, spinning, pulling, sliding, different switches is no accident!

It may seem like a small deal to some. But, for us, every single little push, spin, or slide is cause for excitement.

I love to see those little hands working!

Taking a break...Man that playing is hard work!

Can't forget what a pro is he becoming at self feeding. He can pick up every last crumb!

It's pretty tough these days to get many facial expressions of him. He's always on the go...I usually have to get those in his high chair!

And, although I didn't get any photos, he was able to use his sippy for the entire course of dinner yesterday! We've been struggling with that from day one. IF he showed any interest in trying himself, he couldn't quite figure out to tip it up enough to get something out. He's been up and down with interest/functioning since September of last year. Still needs work, but this is the best he's ever done.

AND, he's been making yet another new sound! He's been blowing on his hands...or sippy cup...or whatever he can find to put up to his mouth! Hilarious! I need to get him a horn or something before he quits! Ooh, or maybe something to blow bubbles!

I heard the weather is supposed to be nice this weekend...Hopefully Monday I'll have some fun pool pictures to post!

By the way, forgot to mention. He's pitching fits again! Sounds horrible, I know...But it's really really REALLY great that he's doing this again! He's expressing his opinion. It's at appropriate times or I'd be worried, because it's not like him at all to cry. He cries when he sees his bottle and wants it...or sees his bib and doesn't want it! He's grabbing and holding my arms when he doesn't want down. That has NEVER happened. EVER! I honestly don't know what is causing this change. He started this the day before Klonopin so I know it's not that. But, the fact that it's continued since then is a relief that the new med is not hampering this. I'm just praying that it continues as we increase the dosage.

skewed

That's the answer I got when I called to check in on the lumbar puncture results.

Skewed. Inadequate sample. Blood in the sample. Necessary repeat.

I'm not even going there on incompetence. Not gonna do it. Our day was too positive to ramble on about the jerks at the hospital (more on that later).

We're not even considering a repeat at the moment. Maybe when the bruise fades on his tiny little hand from the first test, we'll talk about it.

We were just basking in the relief of finally getting it over with...after putting it off for six months!

I so so SO don't want to do this again! YUCK!

Taking that step...breathe!

A recent discussion over the weekend with my mother gave me a realization.

I cannot keep living this way.

Always in fear.

I'm holding him back.

I have to start letting go.



So...she would be proud to know, I've now incorporated Step 1 into my day today.

I let go.


Everyone is probably wondering whatha heck??

First, I have to start by filling you in a little on my one side of my personality...

As shameful as I am to admit...I'm a neurotic, overprotective, compulsive worry wart.

I was like this before the seizures...before Austin even. How ironic is it that I would be dealing with head/body dropping seizures?!!

And you may recall from this post that I thought the helmet would solve everything. My thoughts were that he would get the helmet and have complete reign over the house...therefore become a typical curious toddler with improved development. Problem solved.

That never happened. I could never let go. Of course, then, the seizures were much stronger and danger was much more likely.

But, I don't know why I've still held back all these months. He has a friggin' helmet for crying out loud!

I just...can't...let...go!

So, Mom came up with a Step program for me!

Step 1: Instead of sitting right under him while he's doing his thing in his "safe" room, block the entries off, put his helmet on him, and walk away (while keeping a watchful eye, of course).

Step 2: Once Step 1 reaches a comfort point, give him limited access to the kitchen floor, known to me as "danger city". That's my prospective though. With his helmet on, he's more protected than I let on. In reality, he's perfectly capable of maneuvering through the open areas of the kitchen unscathed. Really. But, when I let go of those little hands, images flash through my mind, and my heart starts racing...and he's soon scooped up and whisked back to the "safe" room.

Step 3: The rest of the kitchen...that one will be quite the challenge. I cannot even fathom the thought of him being near the dining table or his high chair.

Step 4: Little pitter patter following me all over the house!

So far so good. We (or, I, rather) made it through 20 minutes! He walked, tried to run, played...just as if I was sitting right there with him.

I honestly believe this will do wonders for both of us.

Thinking of Sophie

My heart and mind are on Sophie today as she should be undergoing the first part of surgery -probably as I type.

Please keep this little one in your thoughts and prayers.

She so deserves this to be her miracle!


(Any of you unfamiliar, you can read this or this)

Klonopin is underway

We needed a bit of good news this week. Thank goodness we found something to distract us while waiting on LP results....

NO Maple Syrup or any other underlying metabolic disorder found from the latest round of worry (this is not the results of the lumbar puncture -but the serum organic and amino acid tests from three weeks ago)!

Whewwww! I can't say I was surprised, but relieved is more like it. Thankful.

Now we just hold our breath for the LP results. This is a BIG one for us. BIG. It will rule out some devastating diagnoses.

PLUS...We got the Klonopin ball rolling. We started yesterday and so far okay. It's by far the easiest med to administer...Too easy. Just place on the tongue, and voila...done. Not too much in the way of seizure improvement or side effects just yet. Wait, wait, you know the routine.

AND...I have to second Jen and say YAY Kris!!! Now THAT was surprise! And another good distraction! I so enjoyed the finale too. Wasn't expecting all the bells and whistles having never watched an AI finale. Pretty cool.

Hope you all have a fun and safe Memorial Day weekend! We will being doin the same ole...Chad's working and forecast calls for rain all weekend...bummer. Maybe one of these days weather will cooperate for us to get out the hippo pool for Austin. I'm dying to get some photos!

Seizure diversion!

I've noticed from recent posts of mine, that seizures are the only topic of discussion. While this may be the main focus for having this blog, I tend to neglect mentioning our (and my) other happenings.

Like right now...Austin is practicing his new shrill squeal while he's supposed to be napping. It's such an ear-piercing yet delightful little noise! And at some point during this nap, I will inevitably be removing a teeny toddler foot from the crib slats! I found a "crib shield" that's designed to prevent this. I haven't ordered yet, but I'm guessing I will be soon!


Distraction #2?


Okay, first of all, do not judge me!! But, I have been watching American Idol this season. Well, not even all season...just since March. I had never ever seen an entire episode before and actually used roll my eyes at the whole thought of the show entirely. Our OT mentioned that there was a local guy competing and just went on and on about how great he was and that I should be watching and supporting him. I finally did...Although I didn't care much for him, I did find a new TV obsession! Every Tuesday and Wednesday night, after Austin's snugly tucked away and sleeping like a baby, I grab my Oreos and milk and reach for the remote. Even Grey's has taken a backseat to my new show! Anyway, to say the least, I'm geared up for tonight. I'll be watching (though doubtful in the voting window) and pulling for the underdog, Kris Allen. Adam's totally the favorite (at least with the judges) and undeniably talented, but three words...not my style!!


#3


My hubby, Chad, will agree when I say I'm typically a no-frills type. (Which, I think, may be one reason he married me!)

I've never cared for expensive jewelry. In fact, I believe I've actually told him before not to waste a gift by getting me jewelry (because I don't like wearing it much). Occasionally, I'll wear simple earrings and maybe a necklace...and always my wedding band -my engagement ring is sadly tucked away due to the unfortunate lack of lost baby pounds.


But, when I saw Lisa Leonard's designs in a baby magazine recently, I knew I wanted one...And I made a subtle hint to Chad (i.e. a post-it by the computer with website info and four designs I could not choose between!) that it would make a perfect Mother's Day gift (since he ALWAYS asks me what to get!).

I fell in love with her designs because they are simple yet so charming...and every single piece is unique because they are all handmade. Better yet, most are customizable with so many different ways to make them even more one-of-a-kind.

I adored the "wishing star" necklace because of it's significance, but there were tons that caught my eye.

So, on Mother's Day I was presented with two little gift boxes from my Austin, my Chad, and my Bailey (my four-legged, furry dog-er -that's what we call her instead of daughter ;-)...

One with a "wishing star" necklace...the front stamped with "austin". The back stamped with "heal".

In the other (a total surprise -he picked this one out on his own), the "open circle" bracelet. On the front it has Austin's name and birthday...the back saying, "love. hope. heal."

I can't describe how priceless these pieces are to me -even though they're really not pricey at all.
I've never owned anything with such a personal meaning before.

I've worn them several times and just couldn't quit looking down to admire and smile at them. The best gift ever...

I'm already trying to figure out how I'm going to top this one for Father's Day!




#4

This is the infamous Bailey (aka my shadow and stalker dog). She's rotten to the core and requires an energetic owner that doesn't mind being repetitively licked. She's been taken down a notch in the spotlight since Austin's arrival, but was probably the most documented dog in history before that (according to my dad). I think when Austin was born I had somewhere between 250-300 pictures of her. I realized my pampering had gone to extremes when she had her own Myspace. I somehow managed to migrate back towards reality where dogs don't wear clothes and have their own beds (we're still working on the bed thing. She still feels entitled to nestle comfortably in my bed with or without me)..

I swear, I think she forgets she's a canine sometimes! She sleeps with her head on the pillow and body under the blanket. What a sight!

But, she loves her Austin. She knows what the "Austin boundaries" are and very much respects him. The only problem is keeping her from licking him (especially when he falls down or bumps into her). It's weird...she's just protective I guess.

I can't wait for the day when Austin can entertain her and give me some relief!! :-)

One year ago...

One year ago today, we were scrambling to gather clothes for a 2 1/2 hour drive to our closest children's hospital.

I had spent the morning in tears and panic trying to describe the downward spiral of events to our local pedi's nurse over the phone.

It was a Monday morning. The previous Friday morning, we were in the pedi's office trying to describe what I instinctively knew were seizures. I knew I seemed crazy because Austin was perfectly fine while we were there. I was instructed to "monitor" him over the weekend and an EEG was to be scheduled for the following week.

Friday night, I think he probably had two or three clusters. Saturday, we all watched his every move. He had several clusters that day, but none containing more than about 12-15 spasms. Sunday, I saw nothing. I thought whatever had happened was over.

That Monday morning, life went on as usual. My baby was okay. As I prepared him a bottle in the kitchen, I glanced over and saw him dropping his head in his jumper. This was the first time I saw him have spasms in a vertical position.

I immediately called the pediatrician. I couldn't just wait and watch anymore. It was sheer panic. It just kept happening. One right after another.

We exchanged several phone calls back and forth. I was soooo freaked that I remember asking them if I needed to call 911.

Instead of me bringing him back in for another evaluation, the pedi instructed us to take him to the ER at Texas Children's Hospital.

I called Chad and my mom...we would all go together. Once they arrived, we started packing. Less than one month before, we'd already had an ER visit that resulted in an admission. Chad had spontaneously collapsed his lung. So, this time, I knew we should probably take extras...just in case. And, my gut was telling me we wouldn't be back that night.

And, we weren't. We didn't come home until Friday evening. That week my life changed. Fears I never knew existed were a reality and a part of my everyday life.

It's crazy that so much has changed since then yet nothing has changed. We still see seizures every single day. Every single day. Every hour even. Not one day since then has he had a seizure free day. Not one.

Ironically, he's regressed and progressed.

Nothing makes much sense, does it?

Anyway, we found ourselves back at Texas Children's almost to the day. Yesterday, we made that 2 1/2 drive again. For the lumbar puncture.

It was eerie being back there almost exactly one year later. We've been countless times since then, but yesterday was different. I caught myself glancing over in the ER remembering in detail our 5 hour wait to be seen. Remembering having my video camera ready for everyone to witness the episodes that caused all the panic. Because without that, I doubted anyone would believe me. After all, he was in every other way, perfectly normal.

I even remembered one of the nurses saying (after we were admitted), "Does he have Infantile Spasms?"

Chad and I both said in sync, "No. The doctors said they were seizures."

She gave us a strange look. I didn't think anything of it at the time. Maybe that will give you and idea of just how clueless we were. Just how much (or little) we were informed while we were there. Just how deceiving the words Infantile Spasms are. We even left with that notion. We left not even knowing that Infantile Spasms were a form of epilepsy.

Back to that nurse...

She said that a lot of kids come in with the same thing, and "you can just tell they're not right..." -meaning developmentally, neurologically, etc.

Then she said, "...but, he is ALL right!"

That still haunts me today. At the time, it made me feel good...like maybe he's not going to be affected because it should have happened already. But now, you can tell it's affecting him and it affects me every time we go somewhere. I wonder if people notice that he's not right. It's a horrible thing to even care about, and I shouldn't. But, I'll never get her voice out of my head.

Yeah, that's been a struggle. But not at all the biggest struggle. That's the seizures. We're completely off Banzel now. The epi wants us to try Clonopin now. I was supposed to have it in my hands last Friday...but somehow the lines are crossed between the epi clinic and pharmacy. It's Tuesday and we still don't have it.

I have to admit, I was surprised by this choice. He never mentioned it during our last visit as a potential "next drug". He gave me a list of seven different meds that target Austin's specific type of seizures...this was not one of them. I'm not crazy about putting him on another drug that will possibly sedate him. He's just now starting to come around since the Banzel. I hated that mess!! But, unfortunately, there are few (if any) that do not come with a long list of nasty side effects. Sleepiness being one of the most common. But if it can stop the seizures...it's worth my consideration. If we can ever get our hands on it, we will see!!

With the lumbar puncture results pending...and the initial review of the amino acid and urine organic acid tests normal (it's not official until the epi's review)...we are just waiting. Waiting on meds, waiting on results, waiting for the next EEG (in July), and waiting for our next step...Hoping and praying for our miracle!

365

One year ago

Here it is...

The infamous one year mark.

365 days since I witnessed that first "eye rolling episode".

365 days since our lives changed course.

I'm dealing with it much better than I thought I would. Like Mom said earlier in her "lunch call", it's just another day. I keep replaying that in my head and...

Even though there is a strong memory attached, it really is.

I'd be lying if I said I haven't had my moments today...

And I don't know what the evening will bring...

But for now, I'm going to cuddle with my Austin...

And possibly a bag of Oreo's later (depending on how the rest of the day plays out).

To wean or not to wean?

After an frantic couple of days trying to obtain Austin's Banzel...

(We've been using samples for 3 wks and I totally underestimated the obscurity of this med)

And an $80 rx co-pay...and having only used 1/2 a tablet...

It was time for us to reassess the situation.

I checked in to report on Austin's condition as they had told me to do. There has been no improvement since the start of Banzel -in which spasms have drastically increased. And at 5:30 pm Friday evening, the nurse called me back with our epi's instructions.

Cease the Banzel.

Just stop. No wean. Nothing.

I double-checked with her about that, asking if she was sure he didn't need to be weaned. After all it took a full two weeks just to increase his dosage the first time.

Nope. No wean. Just stop.

Call me a little uptight, but I just didn't feel comfortable just stopping as the enclosed med info precisely stated some conditions (such as seizures) may become worse when the drug is suddenly stopped. Your dose may need to be gradually decreased.

Maybe Austin is on such a low dose that it can be stopped suddenly. But, not one medication we've tried and stopped has not required a wean. So, after going back and forth over to wean or not to wean...I'm weaning him myself.

I really don't feel 100% confident that we have given this one it's full potential. I was torn as to whether or not I should chalk it up as a failed med already after only 3 1/2 weeks...Buuut, I couldn't take the clusters anymore. He was having up to 10 a day sometimes. It was killing me. I had forgotten how much those take out of both of us. One here or there was one thing. Having them back to back...that's another story.

I just HAD to know if it was the Banzel making them worse. And, so far, they ARE much better. AND he's battling a nasty case of the sniffles too, which could even be lowering his threshold for seizures.

Of course he's not off entirely yet, but we've cut the dose in half. We'll just have to see what happens this week.

I'm hoping he'll perk up a bit too. I took a round of pics of him playing and walking last week. He looked droopy in every single one. I miss that wide-eyed boy of mine. That vibrant face he had before all the meds and seizures. I miss him having dry shirts!!! He's having low tone issues with his face so his bottom lip is always hanging down...allowing the drool to flow freely! We're working with him...oral exercises...Nuk brush...chewing...Trying to build up those muscles a bit. Maybe it will help him to get some new sounds out too. His left inner cheek pad has not thinned as much as it should, so his chewing stays to the right...which keeps working the right side but not the left. I'm supposed to be massaging that left side to increase thinning...but he is so resistant!! He HATES oral exercises...He screams bloody murder, which fills the mommy in me full of guilt, regardless of my intent to help him. Kind of like cleaning that crusty nose!! Eeewww...we both REALLY hate that one too!

One week...

I just haven't been feeling very blog-gy lately.

I've sat down several times in the attempt to compose something.

Problem is, I just cannot seem to articulate anything right now.

I'm just in one of the biggest funks. Each time I sit down and type, I end up with this long, exaggerated out pour of mixed emotions. There's nothing coherent. Nothing.

I'm angry, sad, bitter, frustrated, overwhelmed...you name it.

I feel jipped and blessed all at the same time.

Each time there seems to be progress, it's practically crossed out and replaced with a setback...

Day before yesterday I didn't see any clusters...his isolated drops were mild.

Yesterday afternoon we had our first speech therapy session. I was so encouraged by the therapist! She seemed to have so many great ideas that may actually be realistic for Austin. Motivation was starting to kick in a bit.

But, the clusters were back....and accompanied by four seriously intense drops (among the other milder ones he had).

So, mentally that put me back at square one. No more excitement...no more anticipation for the moment. Just a knot in my throat that stayed the rest of the day. I was sick to my stomach and curled into a ball to go to sleep.

This happens EVERY SINGLE TIME! Just when I barely start entertaining the thought of better, it gets jerked right out from under me. Oh, the mild seizures...maybe he can start venturing beyond his "safety zone" (which resides in carpeted, softly or non-furnished rooms only)...and BANG! There goes that thought.

I'm just so sick of being scared...and angry...and bitter...

I'm consumed with bits of nostalgia (with us approaching our one year of seizures)...remembering the past in such detail.

I've never been one to embrace change. And this was a MAJOR change in our lives. I just cannot work through this.

This is what I've been struggling with all week. The posts I had prepared somehow morphed into random thoughts all jumbled together...Kind of like this one, but it's the best I can do at the moment. The further we get into May, the harder it's getting. The trooper face I've been wearing is becoming less and less of a disguise.

Everything is just flooding in all at once. All the moments, and images, and emotions from last year are taking over. Never once at that time did I think we would ever still be here fighting to save Austin from seizures and developmental delays. I just didn't. As sad as I was, I really thought it was temporary...meaning a few weeks...maybe a couple months tops.

But here we are...exactly one week away from the one year mark of the first spasm I ever witnessed. Not an anniversary to celebrate.

A day I've been preparing for but dreading at the same time.

I desperately hope everyone is right...that it gets easier. Because it certainly hasn't yet. I'm still fighting the exact same feelings...anger and devastation. I've just gotten better at controlling them.

So, I hope I haven't completely ruined your day. This is not the kind of post I like doing. But, I've waited a week for this mood to pass and it hasn't yet...and may not until May is over...who knows. Maybe I'll find the peace I've been praying for.

I'm hoping for the latter.

maple syrup?

I somehow managed to work myself up into a complete frenzy yesterday morning..

Those stupid high-dollar Huggies are not doing their only job -which is obviously to contain the contents!

And because of our little accidental leakage, I had to change Austin's tee-tee ridden crib sheets...

Only to get the strong whiff of maple syrup...That totally took me by surprise...it didn't smell like urine at all. I made Chad take a sniff too. He agreed.

I thought about it a while...how strange that was. Then I remembered reading a while back about Maple Syrup Urine Disease (or MSUD). It's a metabolic disease that kids are sometimes tested for with IS. I started to panic and went straight to my medical library (aka the internet)...

Totally freaked, I called the neuro first thing yesterday morning. Even freakier...they returned my call within 20 min!!! They told me to take Austin to the pedi to be evaluated and have 2 tests done. A serum amino acid and urine organic acid test. One was a blood draw, the other was a urine test (which by the way took a bottle of juice, a bottle of milk, and an hour for him to "perform")..

Coincidentally we had our 18 month well check that same day, so I was able to wrap it all into one visit (I know they're just loving me for that too).

It's strange how much things have changed for our well visits lately. I used to go in armed with a list of urgent questions...Why is he spitting up? How much formula should he have per feeding? Just exactly how many jars of baby food should he eat a day...how many of each? What color poop is normal...and consistency...? I was poster child for new motherhood! Now, I realize I might have been overreacting just a tad (ya think?)...if things weren't going according to my trusty Baby 411 book, I was a basket case!!

So, yesterday and even our 12 month visit went quite differently. I had no questions regarding feeding, poop, or even sleeping. No questions about getting him off the bottle or transitioning to a cup. All those issues that were SO VERY important pre-IS, were no longer in the front of my mind anymore. I was the one talking most of the time. I'm very much aware of what he should be doing and what he isn't. Just walking into the waiting room of the office reminds me of that. I just went down the list of new goals we've accomplished and what we're working on. There was no waiting for his approval. There was no waiting for suggestions or comments. I didn't complain about the trouble we've had with his eating or communication. Rather I joyfully announced that he's finally self-feeding and that he's starting to clap and reach for me. Forget about how long ago he should have achieved that goal...I was a proud mommy that he's doing it now!

Anyway, back to the point...I'm still waiting on the results from the tests. I'll be impatiently waiting until I hear back from them....even though I'm starting to get more confident that he does not have MSUD. There are I think four different classifications for the disease which range from very severe (which is almost always detected within the first week of life) to the mildest form, intermittent. The intermittent is the only category he would possibly fit. Really, the only symptom he even has is the smell of the urine (which *fingers crossed* may be explained by something simple). Plus, it's an extremely rare genetic disease...chances of him having this are very low.

I'm optimistic that this will end up being nothing more than crossing one more underlying cause off the list. Better to be on the safe side, I guess. It certainly wasn't something I could ignore after reading the severity of the disease.

I'll let you all know when I hear something...

Sophie's Story

I'm sure all of you living in this Infantile Spasms world know about Sophie and her upcoming surgery in a few months...But, for those of you close to my family who routinely check in on Austin, I'd like to share a story of a precious little girl named, Sophie, who could truly benefit from everyone's prayers.

Sophie is ahead of Austin in this IS battle by two years. She, too, was born in October (2005 instead of 2007) and diagnosed in May the following year. It has been a nonstop fight for seizure freedom for nearly 3 years now. Three years. Despite the odds, this adorable 3 1/2 year old has continued to progress and learn. She walks, talks, plays, and interacts. However, the endless list of anti-seizure meds have given her little relief from the seizures she suffers everyday, and her impressive development is now in jeopardy because of this. She has been to see Dr. Chugani several times, and is now, finally, a candidate for surgical resection.

Ever since her mother reached out to me after our return from Detroit, I've followed her story closely. At that time, she was not being considered for surgery and you could sense the urgency and pain in her mom's words. Now, she has a new option. And it's full of seizure freedom and developmental opportunity. But with that comes risks and uncertainty. She's not an ideal candidate which makes this already fearful experience all the more terrifying. I can't even fathom the true reality of this situation...and I've even recently sought out this option for Austin myself.

I'm drawn to this little girl's story for reasons not entirely clear to me. Maybe it's the charm and lovable character she portrays in her videos. Maybe it's because her determination and continued development reminds me so much of my Austin. Maybe it's because her mother's courage and persistence to free her baby girl from the statistics inspires me. And, possibly it's all the similarities we discovered after our visit to Dr. Chugani... and that despite not being a candidate in the beginning, that doesn't mean there's not hope for the future (as terrifying as it may seem). In any case, I will continue to follow her journey to seizure freedom and pray that this surgery gives her the future she deserves.

Please include little Sophie in your thoughts and prayers as she and her family prepare themselves for this courageous step to recovery from this devastating disorder, Infantile Spasms.