Wednesday, June 3, 2009


So, I caught you all up yesterday on how Austin's seizures have changed (or not changed)...

Have we seen any improvements with his development over the past year with occupational therapies and (recently) speech therapies, and countless Mommy therapies??

Lets see...

Where we were:

Pre-IS, we had very little concern about his development. I checked, checked, checked obsessively my way through Baby 411's list of developmental milestones monthly (first time mommy...can you blame me?). None of the big ones were an issue -rolling over, smiling, sitting up, laughing, etc. He was progressing beautifully. I was mildly concerned with some of the social behaviors, but he was just starting to reach that age group...pat-a-cake, object permanence, separation anxiety, etc. Although, with pat-a-cake, he was grabbing my hands and clapping with me. He loved to hear me sing to him (I'm sure he's the only one though). He'd jump (in his jumperoo) when I'd sing, JUMP, JUMP, JUMPEROO! He'd squeeze my cheeks and slobber on my nose when I'd ask for kisses...So, my mild concern was just that...I didn't even mention it on his six month well visit. I was, however, thrown for a loop when the pedi asked if he was babbling yet...which he wasn't. He asked if he'd been blowing raspberries because that usually comes right before babbling...which he wasn't doing. He made gurgle noises and that was it (besides the usual baby squealing). I came home from that visit worried. But, he put my mind at ease within a week of that visit by chirping DA-DA-DA and I-DA and DA-DEE on a regular basis. We were back on track!

That was a mere two weeks before the IS started.

During his near five day stay at the hospital, he was considered on target developmentally.

Some skills he had mastered by this point:

-smiling, laughing (it always took much effort to get him laughing)
-rolling over
-sitting unassisted
-transferring object from one hand to the other
-babbling with consonants
-ability to associate small commands with actions -when holding his hands he would jump when you said jump...he would attempt a kiss when asked
-holding his bottle

Within one week of starting ACTH, Austin quit babbling. He went from da-da to a miserable sounding mmmm. I attributed it to ACTH side effects at the time (because I was only prepared for physical delays -pretty clueless, right?). Then came the loss of social interaction and interest in toys. Again, ACTH was the culprit. In my mind, everything would pick right back up after the ACTH days were over. After all, at the peak of the ACTH, he learned how to get from laying down to sitting up independently. If he was doing that, there was technically no regression.

Everything else was side effects...or I thought.

You may notice my so-called denial to the left of this blog in the For Austin section. I noted that he has shown no signs of slowing down. I haven't been able to make myself change that.

There were actually many skills he lost or that were delayed last summer. He would not accept textured foods. He rarely smiled and never laughed anymore. He seemed unaware and totally distant when spoken to...very little interaction/interest with people, surroundings, and toys.

He began standing independently by 9 1/2 months. He never pulled to stand. He never even really crawled. He stood from a bear crawl position.

Slowly ACTH worked it's way out of our lives...but the skills never returned like I had desperately hoped.

He began walking at 11 months.

By his first birthday, I finally accepted the fact that he was really delayed and we didn't have ACTH to blame anymore. He had been off for over two months.

It was extremely confusing for me. I wondered how he could be doing so well in his gross motor skills yet so behind in every other.

Fast forward...

Where we are:

I don't know what age level Austin is considered. In some ways, socially, he seems to be where he was when this started...around six months.

Communication is another big area of concern.

Gross motor and fine motor...fairly good.

Skills he lost:

-ability to interpret small commands and actions. No more kisses. No more jumps.
-babbling with consonants
-communicating his needs
-interest and social interaction with toys, people, surroundings

Skills he has either regained, mastered, or learning now (since IS):
-laying down to sitting independently
-sitting to standing independently
-acceptance of textured foods
-fine pincer grasp
-self feeding (with fingers)
-crawling over objects (pillows, my legs, etc.) This was accomplished just this week after six months or more of practice!
-communicating needs (mainly only urgent needs...still a work in progress)
-gestures (reaching to be picked up)
-clapping (not sure whether it is a social clap or not)
-functioning certain toys
-shaking toys that rattle
-walking with objects
-smiling and laughing (still takes a lot of effort for laughing)
-new sounds although still no consonant babbling
-drinking independently from a sippy cup (another work in progress)
-reaching in an object (slowly learning)
-interest in some toys sometimes (one minute he will belly laugh at a toy -the next he doesn't even want to look at it)

There are so many skills that are delayed. We are so behind that I'm really no longer aware of some of them...trying to focus on our goals.

Which are:

-deliberate transfer of an object (handing me a toy intentionally or a voluntary release like putting his sippy cup down instead of dropping it)
-reaching in and putting back (similar to the above. We are working on putting toys back in a container)
-self feeding with utensils
-dancing (man, would I love to see him do a little jig!)
-gesturing (wave bye-bye, point and grunt for a desired object, shake his head no-no etc)
-speech (I'd be happy with meaningless consonant babbling)
-drinking from a straw or sippy cup with a valve (he will not suck anything but a bottle nipple)
-showing affection by hugs or kisses
-function a toy without mouthing it (this is a BIG concern. He still would rather mouthe a hand held toy rather than play with it)
-comprehend and respond to simple commands (like Come to Mommy, Austin, or Sit down)
-throw an object (like a ball)
-object permanence (look for a hidden toy)
-separation and stranger anxiety (he does not care if I leave the room, nor does he care if someone unfamiliar interacts with him)
-imitating behavior (facial expression, noises, etc)

I'm probably leaving a lot out...but you get the idea. We are very behind.

But, we've come a long, long way!

More than anything, I'd like him to run to me and give me a hug. Or, come looking for me when he needs me to hold him and comfort him. I just want affection reciprocated. That is so much more important than sucking through a straw or throwing a ball.

His comprehension is questionable sometimes. There are times where he seems to "get" exactly what you're saying. Others where his mind seems a thousand miles away. He shows little reaction to words like bottle, paci, Mommy, or Daddy. But, he will open his mouth when I say sippy or bite (when seated in high chair). He reacts to seeing his bottle or paci, but not by hearing the words.

The list of goals is certainly overwhelming. Seemingly impossible.

But, I vividly remember saying that I had visions of Austin feeding himself Cheerios and walking around smiling. After last year, it honestly seemed unattainable.

But, it's an everyday reality now. One that I have not once taken for granted...nor will I. I still get tickled watching him feed himself. LOVE IT LOVE IT LOVE IT!!!

And, he is truly a happy little boy. Nothing pleases him more than walking or getting his arm rubbed! He has the most magnetic personality which has started peering out through the meds lately. His energy comes and goes depending on which meds he's on, and it's always a gift to see his chipper little self again!

We are taking baby steps toward progress. And that's certainly better than no steps at all!


JSmith5780 said...

It's definitely a slow upward climb with the occasional dip and/or plateau thrown in, just to keep you on your toes. All I can say is it takes time. Austin has been receiving therapy since he was 2 and here we are nearly 4.5 years later... still climbing. Hang in there, he'll get there.

baby trevor's mommy said...

I know Trevy is a little further ahead...but I get where you are coming from. I am not convinced that Trev really understands anything most days. I can shout his name while doing a headstand...and he still wouldn't look my way. Bugger! But the truth is...I am convinced that his little brain is not recieving the right messages. That it's getting all garbled up in seizure land. But I do know that he understands what he can see, touch and taste. Trevor mouths EVERYTHING! In fact...I was thinking to do a post on things he's chewed through. Window hair name it! Which is why I'm working on Picture Exchange as a building block towards communication. It might be something to think about with Austin? Trev's fine motor skills are VERY delayed...and that is causing some frustration...but I think he's capable of understanding the concept. See picture of cheerios. Want cheerios. Give picture (altho I'm fine with just pointing or tapping) to mommy. Get cheerios. Easy Peasy. *smile*
I know it's hard. It is. It killed me seeing that little guy at Toby's ballgame. It killed tonight when another mom asked how old Trevor is. I find myself hesitating. Not wanting to answer. Not wanting to see The Look. Although I actually think the word is out. I'm the mommy of the elephant on the bleachers! lol
I think if you did a list of where you were last year compared to'd be amazed at how far you've come! You're strong. And honest. And real. And an amazing mommy! I'm so happy to be connected to you...sucky that it has to be through seizures...but happy...


Holli said...

Jen -It definitely IS slow. Really so slow, that it's intimidating to think about. But, I think of days like yesterday and the day before. He accomplished a MAJOR goal! After all the working, I was wondering if he'd ever do it. He keeps me guessing...and hopeful!

Danielle -It's a shame it takes a disorder like this to meet new friends! But, in any case, I'm glad IS does have such a close community. And, of course I've never been around Trevy, but watching his videos and reading his latests inspire me to get Austin there! By the way, I do my mental checklist around other kids too. We have a nephew about 9-10 mos old...he's already passed Austin in so much, it's so painful to watch him because I can't quit checking his skills. I guess it's normal...but it still sucks!