Monday, January 7, 2013

All Things Jayce

I guess it's time for another update, although I had to remind myself where I left off because it's been so long since I've written anything. Nearly three months ago, I told you about our visit to the Waisman Center along with the therapies Jayce is involved in...

Well, a lot has been going on since then (imagine that). Jayce has been visiting with his speech therapist twice a month. We've been working on lots of new things - but our main focus has been keeping his hearing aids on! Jayce has also been exploring new sounds through play. He enjoys banging on a drum (or anything, really) and it's been exciting to watch him actually take an interest to sound. Everywhere we go, I try to point out a new sound. If he's sitting in his high chair and his brother lets out a loud squeal, I look at Jayce with my finger to my ear and say, "Did you hear that?" and then I ask Wil to do it again and again so we can point it out to Jayce some more! It's loud around here! Even while reading books!
We've also been trying to encourage Jayce to make sounds such as "mmmm" and "buh", which is typical for his age. He's able to produce vowel sounds, but he still isn't making any consonant sounds or typical speech patterns like MaMa or BaBa or DaDa yet. He mostly just yells or screams or whines to get our attention. He is responding to his name rather consistently when aided. This is great... even if he is only hearing the first letter of his name (I'm sorry I put a high frequency letter in your name little buddy ~ you can't hear it ~ I should have named you Bob:).

The best part about speech therapy are the games! I really wondered what "speech" would look like for a baby, but it's amazing! Jayce's favorite game involves two puppets ~ a cow and a chicken (this reminds me of my friend Sondra, but that's a whole other story).  She holds the puppets in front of Jayce and makes a distinct sound for each animal (a MOOO and a BUCK! BUCK!). She moves their mouths as she makes the sound so that he associates the sound to the moving puppet. Then, she tries to trick him into looking at the correct animal after a sound is made without any puppet movement. He has to learn to listen for the sound RATHER than look for the visual cue. Tricky, tricky! Especially for Jayce, my little visual learner.

Jayce has also been working hard during Physical Therapy. We started at the Middleton Rehab Center on Tuesday, November 6th. We met with a great pediatric physical therapist named Jim who decided after a brief evaluation that Jayce would benefit from weekly, intensive PT for three full months. Now this posed a bit of a problem because our insurance company only approved six sessions (yes, 6... I hate them ~ more on that later), but when someone tells you your child "needs" something, you go with it. So Jayce got to work...

Jayce has hypertonia (increased muscle tone) in his hips and legs. This basically means that these areas are very tight; his muscles are quite stiff. So, some very basic things (although I'm learning that nothing the body does is at all basic) like sitting or changing positions is difficult for Jayce. Imagine sitting up while your legs are bent at the knees. Now I'm not talking sitting "criss-cross applesauce". I'm talking knees up and legs stiff. It's hard and wobbly! Changing positions is hard for Jayce too. His muscles seem to get stiffer while in one position, so moving into another is tricky. So therapy for Jayce requires him to move! For the first 30 or so minutes of the session, he's all smiles, but after that.... look out! The thing about Jim is that he doesn't give Jayce ANY help. If he wants a toy that's on top of a table, he has to figure out how to get up there. Here is what PT looks like for Jayce:
Jayce's quadriceps and hamstrings are super tight, so we've got some specific stretches we do multiple times a day to loosen him up. The thing with hypertonia is that it's neurological, so he'll probably always be this way. The therapy is a way to teach him how to function as "normally" as possible with this condition. He's also working on touching his toes. I painted his toenails purple to encourage this as well. Jim thought this was funny. I was serious! I never knew that some kids couldn't touch their toes and that this was a problem... Better yet, I guess I never knew it mattered enough to pay attention! I'm assuming Wil touched his toes, but you know what ~ I never cared enough to notice. Funny how things change... Jayce WILL touch his toes.
Sitting on top of a bench will increase his core strength (belly muscles) so that he doesn't topple over while sitting. Reaching out for things in front of him is also a good way to strengthen his muscles and improve his overall balance and coordination.

Here, Jayce is on his knees. His therapist is working on changing positions~ kneeling to standing. Jayce's body just doesn't seem to do these things naturally. While he's on his knees, he doesn't automatically lift a foot to stand up. He's too tight. In fact, if you were to try to do it for him, it's nearly impossible, he's that stiff!

 So, the therapists are really working on teaching and then encouraging Jayce to shift his weight, then lift his foot, put it under him and push! It's so interesting. He's kneeling there and you can tell he's thinking, "I want that light-up wand, but HOW?" He works so hard and with Jim (and Janelle's) help, he got there!

Here the therapists are working on changing positions from sitting to crawling and then back to sitting. At this point he was almost 9 months old and I was getting worried about the whole crawling thing. He wasn't crawling. At all. I kept reminding myself that some babies don't crawl, but I wanted it so bad for Jayce.
You see, the thing about Jayce is he WANTS to do these things. For months, he's been rolling from one place to another just trying to figure out how to go FORWARD, but he just can't. He can barely get into the crawling position, let alone "SHIFT" his weight and pick up his legs.. one and then the other. Given all that we knew about Jayce, I wondered if he'd ever crawl or especially walk. It just seemed so hard for him... so unnatural.
After about 4 weeks of therapy with Jim, we learned a few things. He explained that hypertonia and Cerebral Palsy are closely linked, but that if he gets a CP diagnosis, it really won't change Jayce's "plan". Now, that's all he's said about that because he's obviously in no position to diagnose, but based on our conversations, I'm coming to terms that it's inevitable. I guess we'll see in April when we visit our developmental pediatrician. She's the one who would give him the diagnosis anyways.
We also learned something rather spectacular. Jim told me that he would be "surprised if Jayce doesn't walk". Now that just made my day, my year! Until that day, no one had ever given me any inkling that he'd be able to walk. In fact, people basically scared the you-know-what out of me every time they said those 4 dreaded words, "we just don't know" which always, ALWAYS felt like, "we actually do know... it's going to be the worst possible scenario you could ever imagine, but we're never going to tell you how bad it's going to be because we just don't want to ruin your day and we love a conspiracy around here". That's what "we just don't know" feels like to a Mommy who's terrified all day, every day. Of everything. Jim says he should be able to walk, we just don't really know what the "quality" of his walk will look like. Now, this scares me a bit, but we've also learned something else about Jayce during these last few weeks of "intensive, weekly therapy"...
Never. Ever. Ever say, "Jayce might not be able to..." or "it may be very difficult for Jayce to..."
Because Jayce might just tell you to "Suck It!"
The proof is in the pudding...
"Touch my toes, easy!"
"Sit up tall, not a problem!"
"Crawl. Who said, 'never'?"
This video was taken on December 8 when Jayce first started crawling. He was 9 1/2 months old (only two weeks behind Wil). He's amazing now! He crawls all over the house!!
"Pull myself up? Shift my weight and bring my legs in?"

"And done!"
(Pardon the crooked butt shot. Men. No butts!)
I know he'll be pulling himself up to standing in no time. I just know it!
So, that's our Jayce. This little man just never ceases to amaze us. All of us. These last few months have brought so many appointments and so much more to think about because we're actually getting to know Jayce. We're beginning to see his future. And you know what, it's not as scary as I imagined. It's actually looking pretty regular or at least regular-enough compared to where we started.
Keep on, keepin' on my little fighter boy!


  1. Im so happy he is doing so to see him crawl brought tears to my eyes. he is just a doll....he has been through a lot but wow what a trooper he is. he is so lucky to have you...
    Always in my thoughts hun

  2. As usual, your post brought me to tears! Tears of joy! Carry on, warrior Jayce! xoxo