Following Dr. F’s evaluation last week, I have been working with his awesome therapists on their opinions of what to do next. His PT, the amazing Ms. S, wrote the following email in response – Daddy P and I couldn’t be more proud and in awe of his super fast progression in the gait trainer!
“I think him walking more throughout out the day is going to really help his tone! He did amazing on Thursday. We walked without the seat and he only needed occasional help to remain standing (only about 20% of the time). Furthermore, he took alternating steps 90% of the time…no more bunny hopping! That is amazing progress in such a short amount of time! He wanted to keep walking the whole session, but my back was giving out! So we stopped after about 30 minutes and then worked in quadruped over a stool (the ones in the music room) and he only needed occasional help to stay on hands and knees while turning the pages in a book.
He continues to be a rock star in PT!”
What a cool little dude. Hoping we don’t lead him into a regression during the upcoming 3 week holiday break!
G had an intense review today with his new developmental pediatrician. There was a team of 5 folks playing with him, torturing him, and loving on him as part of the Bayley test which assesses his current developmental status. The last review was 15 months ago which you can read in more detail here.
For some odd reason they don’t give me the test results right away and I have to call in a week to get them, but overall she was super impressed with his progress and cognitively, he has gone from a 5 month level to 12 months. This is great and a significant sign that he is understanding what we say, he just physically may not be able to comply.
Some of the feedback from the variety of therapists ranged from getting him thumb splints (again), getting him a compression suit (this would be like his Theratogs but not as complicated), looking into power mobility, concerns with possible scoliosis because of his poor posture, and the never ending question on his vision. This time there was a concern that he wasn’t tracking well and perhaps it’s his droopy eyelids which are causing part of the problem, along with his occasional eye crossing.
I wasn’t keen on the thumb splints and power mobility – I feel like a powered wheelchair will just let him give up on learning to walk when he sees how easy he could get around in a wheelchair. We had all kinds of drama the last time we tried thumb splints, so not psyched about that road either….next steps will be talking to his school and private therapists for their thoughts, and scheduling another vision exam.
And with that, a pic of the little man and his sister with Santa – he was having a rough day and screaming all night before we saw Santa – he literally lit up and had the best smiles EVER with Santa – once that was over, he promptly returned to his bad attitude! I suppose he knows who he needs to impress to get presents in a few weeks!!
We recently received our gait trainer for little G that we had ordered about a month ago. The gait trainer allows G to progress towards walking while giving him the support he needs to be upright. We haven’t been able to use it much at home but sent it to school so his PT could work with him.
The following video was sent by his PT, Stephanie, and is a short excerpt from his sojourns throughout his school as he cruises for ladies. Check out the sweet “Lookin’ at you Jill!” and “Nice dress Anne, it’s totally your color!” sign language he gives the ladies as they walk by. Little stud.