Friday, May 07, 2010

I love days like these

You know how it is when you have a kid with CP (or any other developmental delay)... you wait and wait (and work them) seemingly endlessly for them to progress. And then, just when you least expect it, things start to click and they make a step forward. With my son, it has been months since I have seen much progress at all. Sure, his head control and trunk strength has improved gradually. But seeing him do something "new"? Well, it has been a long, long time.

However, lately I have seen my boy do things I never thought he'd do again. Tonight he rolled over from his right side to his left. On purpose. Then he grabbed an electrical cord (yes, I let him do it... not plugged in) and lifted it high in the air. He worked like hell to get it in his mouth... like 15 minutes on this one task. Smacking his lips, sticking out his tongue, moving in ways I haven't seen since before the stroke. Now, he is working on rolling over again.

Yesterday morning when I got him out of bed, I neglected to sing his "Good Morning" song to him. When I put him on his changing table, he said "goouh" to me. Clearly, wanting his usual song. Lots of big smiles all around when I complied. I haven't heard a hard "g" sound since last spring. He is babbling more than he ever has. Stroke or not.

And today, he did so well in PT they brought out the cameras!

I'm just so proud of my little man. What a joy to get to be his Mommy and what a fabulous Mother's Day gift he has given me this week!

Thursday, April 29, 2010

The future is now

So, when William was first diagnosed with PVL at 4 weeks old, his neurologist told me he would likely have seizures. And then after his stroke, I knew that the likelihood was even greater. Well, yep, my Man had his first known seizure last Friday. It was very short but those couple of minutes were like an eternity. I was so terrified that it wouldn't stop and he would end up in the hospital again.

But it did stop and I took him to the ER. They observed for several hours and took blood samples. Then we were sent on our way. Thank goodness.

Mister has been in a really great mood since then (crazy, I know). And his very much increased dose of Keppra (he was on a "preventative" low dose before) has decreased his retching significantly.

I'm hoping to do a good update on us all soon. Things are going well with much progress being made since his stroke.

Friday, February 19, 2010

Another Giant Step Forward

Wednesday William made another giant step forward in his recovery from the stroke. He passed a swallow study! He was able to swallow pudding and honey thicknesses with no issue and penetrated 1 out of three times with nectar.

So, for now, we are calling him safe to eat very thick foods. He is going to enjoy being able to eat chocolate pudding... the boy loves his chocolate!

We will schedule another swallow study in 4-6 more months and hope that his ability to swallow thinner liquids will have improved. I don't think we are going to get rid of his GJ tube any time soon but it will be fun for him to practice eating again!