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Tuesday, August 25, 2009

Worth It

“Impossible is just a big word thrown around by small men who find it easier to live in the world they’ve been given, than to explore the power they have to change it.
Impossible is not a fact.
It’s an opinion.
Impossible is not a declaration. It’s a dare.
Impossible is potential.
Impossible is temporary.
IMPOSSIBLE IS NOTHING.”
(Thanks, Maz! I love this!)
I think we heard the beginnings of a cry!!!!
The RT that goes into the chamber with Christian is this big, bald, tough looking guy who looks like a 250 pound Mr. Clean. He's also the type of guy that you can tell is a really big ball of dough inside. He goes in to the chamber with Christian and does leg exercises with him and he kept saying that Christian was fighting him. When they were done with the HBOT session he handed Christian to me and Christian was wearing his newly found scowl and he began to whimper. Not once, but a few times like he was trying to cry! Everyone in the room heard him and said, "What did you do to him, Ed!" Of course, all in jest, but it was the cutest thing. And music to my ears. The funny thing is that almost every time he comes out of the HBO chamber, he makes sounds. He may not make sounds all day prior or all day afterward but when he comes out of the chamber, you can hear a very clear Christian voice. Totally worth it.
We had a specialist come to examine Christian's eyes today and it was exactly what I thought. Cortical Vision Impairment (CVI). There is nothing wrong with his eye - the structure, the ability, the pupil dilation, everything is intact and functional. It's just that the neurons that send messages from what he sees to his brain to make sense of what is being seen needs to be retrained. So the specialist gave me some exercises to do with him to wake up those neurons and make those connections again. It was very fascinating and he seemed really optimistic about Christian's ability to make sense out of what he's seeing again with the right attention and exercises. He did mention that we needed to get a diagnosis of CVI so that we could qualify for specialists to come and see him and give him more attention. It was a good meeting and, long story short, the issue is not with the eye but with the brain. No news there.
I also wanted to thank everyone for their super duper supportive comments in my last blog! It means so much that you even READ by blog, but your comments lift my spirits and give me so much inspiration. You all are the best!
As for the capping trials, we didn't try any tonight. Instead, I did finger inclusion. This is when I take my finger and block the trach. It's much easier, especially because we're trying to see what he'll tolerate and right now we're measuring in seconds. I feel like I have more control when I'm doing the inclusion. He made it 16 seconds. Again, I'm not being impatient with this. Breathing is a big deal and we want him to do it on his own when he's good and ready. It was suggested to me to downsize the size of his trach (4.0) by the day RT. Then in one of the comments to my blog it was also suggested. I've been asking around for different opinions but the night RT said she had only downsized when the capping trials were already successful. Okay, so now I'm confused. I'm going to consult with the doctor to see what he has to say about it.
I'm so excited about going home! I should get confirmation tomorrow. Home needs us and we need home.

5 comments:

Lucy and Ethel said...

It is so exciting to read the updates!!!

And it's true - impossible is just a word.

'Lucy'

Rochelle said...

I'm glad you were able to have the eye specialist examine Christian's eyes and give you input as to exercises, etc. to help strengthen those beautiful little eyes. And, even though it seems odd to be happy to hear a baby cry, I know that you are thankful for his whimpers and cry and, for that reason, I am also happy that you got a little bit of a cry or whimper from him after therapy. Little steps, little miracles. Keep on believing!! Hope you get good news about your discharge today. :)

Tracy said...

The cry.....wonderful, exciting, joyous!!!!!

I bet you will be so excited to get home. Can't wait to hear the details.

maz said...

So happy to hear about Christian's cry!!! :o)

lisas said...

way to go christian! you let them know how you feel. i'm glad that you also had a lot of witnesses.

i'm excited about you going home too. wishing you good news.
love, lisa

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