When we got home, he could not hold up his head. He choked on even thick foods, and got so excited and frantic every time he saw food that we could hardly pry his mouth open (he clenches his jaw when he's excited) to put food in his mouth. His head would pull to one side with his tone if he was excited or upset. He could not bare the weight of his tiny body on his legs. He weighed 17lbs, and was 31.75" long (actually likely less as they had a hard time measuring him, and later measurements were closer to 31"). He took at least 1 two hour nap a day, sometimes 2. If you laid him on his back, his legs 'frogged' out instantly and he was unable to move them unless doing a wild flail to scoot across the floor. He cried silently and would turn blue any time he was jiggled or bounced even the slightest, or patted on the back to burp.
Now he can hold his head up about 50% of the time, he can drink juice from a sippy cup, and he opens his mouth all on his own. He licks suckers and popcicles. He LOVES to try new foods. He's learned to stand with support, can sit on my hip, and holds his face towards you when you feed him. He weighs 27lbs and is 35" tall, and only takes one short nap in the afternoon (sometimes). He can also extend his legs, and use his feet and legs to kick things on purpose (which he thinks is hilarious). He is getting better about reaching for things and manipulating toys. He can hold a sippy cup with help. If he cries, it's a full out cry that you can hear across the house, because he finally has enough strength in his diaphragm to force air to move that strongly. He no longer cries at being bounced and actually loves to 'ride the horsie' and be bounced on your knees. He has a pet chicken that he likes to pet because she's soft and fluffy. He loves watching fish. He has a crazy goofy sense of humor and will laugh at the most ridiculous things. He's extremely ticklish. All of his doctors and specialists adore him, as does his family.
He still has a lot of hurdles to overcome but we will be with him through it all. This year he gets a cochlear implant, as we have discovered that he is profoundly deaf. What windows that will open for him to develop even further! And he has started medication to help with his dystonia so that he can better control his body. He is a very hard worker at therapy and the sky is the limit for him. We are so blessed by this sweet boy. I cannot wait to see what the next year home holds.
Here are some pictures from the last 6 months.
|Snoozin and looking adorable after therapy|
|Sporting some nifty AFOs|
|Killer pouty lip|
|Playing in the corn at the fair!|
|Strolling in the 4th of July Parade with 4H|
|First time sleeping in a tent|
|Adorable even in a gown while waiting for his sedated ABR|