July 29th, 2009

I worry every day about the progress that Kinnick and Carver make. I want them to do everything that a normal healthy toddler is able to do. Some days it feels like we aren't getting anywhere and I have to really step back and think about where we have been and where we are today. Sometimes it's really hard to see the changes because they are so gradual. If we don't keep working on things and pushing Kinnick and Carver, then they may never do things that they would do if we pushed them. They're really doing pretty good for being blind and blind/deaf.

What is Kinnick able to do?

She is pulling to a stand using just about anything.

She is walking around walls, furniture, or anything she can touch.

She is bum scooting all over the place.

She can walk with her gait trainer - by herself.

She can sit in the cozy coupe without falling out and on a tricycle while you push her around.

She can take her puzzles apart by herself.

She can get blocks out of a container.

She can pat-a-cake and do the fishy song.

She has our entire upstairs committed to memory and can go anywhere she wants to go.

She can wave bye-bye.

She has several small words and several first letters of words.

She is eating her baby food and drinking her milk with help.

She is OFF O2 during the day!!

She has not been in the hospital over night since last year.

This is pretty good for a little blind girl with hypotonia. I was told that blind children do not walk independently until they are at least 3 years old. Kinnick shouldn't have any problem meeting that milestone. The words and eating are a little harder for her due to her paralyzed vocal cord. However, with lots of practice, she will get there.

What can Carver do?

He can roll all over the place.

He can sit with help.

He can hold his head up in his rifton chair (it still gets away, but he does a good job of keeping control over it).

He can stand in his stander while playing with toys.

He can pick up toys to play with them.

He enjoys pat-a-cake, this little pig, and itsie bitsie spider.

He can grab at a toy if you ask him to get it.

He can pat a drum if you ask him to pat it.

He can shake a rattle if you ask him to shake it.

He can anticipate a tickle.

He has a few new sounds including uhda da.

He is eating his baby food and drinking his milk with help.

He is OFF O2 during the day!!

While this doesn't seem like much, it is. It's amazing the difference having an ear makes. Suddenly the little vision he has is starting to make more sense to him. He has really started using his vision (and it is very poor). He really didn't pay any attention to his vision before the ear. It's also changed his eating. Before, his eating was mostly us sneaking bites into his mouth, and forget giving him any fluids. Now, he opens his mouth for EVERY bite and drinks a good portion of his fluids nearly every meal. Not too bad for a blind/deaf child who has spastic quad CP. Carver still has lots of work ahead of him, but we're not going to give up. If we don't try, it will never happen. With lots of work, we still feel like he will sit independently and walk with help.