Jen, another CI Mom, left a comment on the blog today wondering how AJ was doing. Thank you for doing so, as I have been meaning to write a new post with updates on his progress.
AJ seems to be turning a corner. His spirits are up and you can just see his strength increasing each day. I mentioned in the last post that he had some awesome fine-motor skill gains earlier in the week. His OT brought some of her evaluation tools to start his testing for his IEP. He accomplished the following:
-Put IN and pulled out wooden pegs from wooden peg board
-MARKED A PAPER WITH A CRAYON multiple times
-Pulled plastic pegs apart with two hands multiple times
Needless to say, we were all stunned! The next day, Daddy witnessed him putting the balls from his ball popper into the hole where the air shoots them up. He didn't just put them in the twirly thing that winds the balls down to the beginning (sorry that's not very technical), he put the ball directly into the hole.
On Thursday his PT came (YAY!) and we discussed AJ's issues at length. AJ still has his trunk stability, which came as a surprise and relief. But he's been a noodle from the hips down. His PT noticed his toes curling when he stood up, along with his left leg in the position of when you "stand on your tippy toes". He wasn't putting much, if any, pressure on his left leg. She suggested wrapping his left calf/foot to give him input on that side as well as resuming a more regular brushing program with him. We ran out of VetWrap (coban) tape before surgery when we used the last of it to practice his head being wrapped. Since he laid on his left (weak) side for the 2 hour duration of the surgery, and had minimal time to bounce back before he landed in the ER, his body really shut down when he got sick last week. If he wasn't feeling good, we probably carried him more, taking away opportunities for him to walk, which cause weakness as well. Oiy.
I also admitted to his PT that I actually try not to have AJ walk long distances. Why? His weight. I am terrified of how many calories he's burning while walking. Seeing his regression, I am determined to get him walking again. Of course we have a weight check the day after his activation. The GI Clinic knows about his weigh-in before surgery and the nice gain we had there. They are not aware of his trip to the ER and what has transpired since. I would venture to say he's fluctated, or dare I say it, lost an ounce or two. That would only be fair after watching his body over the last week. So if they aren't happy, too bad. He needs to do all these things at the same time, something always gives. If right now thats his weight, then so be it. I understand, it shouldn't be a continuous thing, but seriously, I think he gets a "get out of jail free" pass on this one.
AJ's TOD came the same day. We discussed the plan of action for AJ post-activation. I also asked what his expressive/receptive language age equivalencies are. We never really get hung up on numbers, but I needed to know for the boatload of paperwork the state wants filled out.
AJ: 33 months/2 years 9 months
Expressive Language Level: 6-7 months
Receptive Language Level: 8-10 months
That was disappointing to hear. We knew they were low, but as hard as we've worked with him, it still stung. She also gave me the name of another family who has a deaf child (CI user) who also has CP, and who also regressed after surgery. I look forward to talking with them, as well as the other CI/CP family we know. it is just so odd that this happened after he got sick, not post-op.
While his TOD was explaining some of the initial exercises we will be doing with AJ post-activation, she said a word that has incredible power.
"We'll say BA BA BA and give him a cue that its his turn to immitate and SAY BA BA BA." What? Come again? My kiddo is going to say something?! The excitment about AJ's activation is finally beginning, although we are still guarding ourselves. I don't know, its just something we've learned to do.
After AJ woke up for his nap this afternoon, he surprised me by schooching down his bed to the floor and walking to me holding onto his bed. More progress, he didn't just crawl. After raiding Farm & Fleet's supply of VetWrap tape, AJ became an 80's child (think legwarmers, gloves, and Flashdance). We noticed he had been sucking his thumb so much and so hard that with all his teeth now, he was beginning to wear down his skin and yeah...it wasn't pretty. So we cleaned, bandaged and taped his arm/hand to prevent him from sucking on his thumb. Of course he can still get the tip of it, but at least the skin crease can heal while we google "How to get your child to stop sucking their thumb as their comfort." We also taped his leg and "treated" him PT style throughout the day. This evening he somehow scaled a Rubbermaid bin, kneeled on it and played the piano, cruised the couch, decreased his toe curling, and took 6 steps on his own. He discovered how to play peek-a-boo with himself and the end table, figured out how to crawl in and out from under the end table, and launched a beach ball at me. I think he's feeling better.
Today was Opening Day for our Milwaukee Brewers, who won 4-3 against the Cubs. WHOO HOO! Go Brewers! Daddy found an adorable t-shirt for him that we had him wear today while we watched the game. He even chugged his apple juice as I am sure many a fan were chugging their ice cold Miller Lite. AJ ended our evening with such a sweet smile, a nice change of pace from the last few weeks.