Wanted to post a couple of things William has started doing or hasn't done in over a year and has recently started. For our family and friends that have been following our story since William was diagnosed 10 months ago, you can appreciate what a miracle these little things are!:
He has learned to mouth mamamamamama, although no voice has come out to follow it, yet. I'm trying to catch this on video so stay tuned! He can voice extremely well when he is unhappy or wants our attention, so maybe he will do this someday!
He is moving his arms a lot better and when I say, "up" he will put his arms up for me to pick him up.
He giggled at Robert the other day (Robert makes me giggle, too, and he doesn't even try!) Its been over a year since we heard his giggle and didn't think we would again.
He does NOT like Utah lake water. Yes, the water is cold but I wanted to at least let him at some point "swim" thinking he may get used to it. Nope, the SECOND (and I mean the exact moment) his feet hit that water, he pulled both legs up to his chest very quickly and screamed. Not bad for a kid that doesn't have good motor control. We shall try indoor pool water first, I guess! Papa Ron Glasgow and Gogo Marcia saw it!
He is making amazing eye contact with whomever is speaking to him, and turns his head to follow mommy and daddy. He recognizes "cat" by words and also by sign. We work on other words but that seems to be the one he gets the most. When I ask him to find the kitty, he will look for our cat. Its really cool to see this! I do sign with him just in case he loses his hearing, although they say he shouldn't. But I've learned I can never be certain.
There are obviously more things he can do, but I've already posted about them! He is the sweetest and beyond loved!
With this disease, even though he had the transplant post-symptomatic, William brain isn't actually going to repair itself. Brain damage is irreversible. However, he is still healing from his transplant and will be for up to a year or so (January 22, 2016). They say his baseline of skills will be established around that time. We just don't know what skills he will get back or what new ones he will learn. Every day is a complete surprise! And a lot of unknowns! We are realists but also setting the bar high for William.