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Tuesday, January 19, 2010

Seeing Clearly

We met with the vision specialist from ASDB who came to assess Christian for the first time. Christian received a vision assessment from an eye doctor back in September where we got his CVI diagnosis. Well the assessment was great! The specialist was really optimistic and said by what she observed, Christian is seeing more than he lets us know. He's very aware of his surroundings and his auditory abilities are really good. He even got distracted by us talking when the specialist was trying to work with him. She said he was more interested in us. She said he has vision, it's just slow and he seems to be stronger out of his left eye/side. It took some time, but eventually Christian was able to look at some of the toys the specialist brought. The good thing about CVI is that vision only improves so the specialist would like to assess him again in six months.

There was also a soft doll wearing black, white, and red that Christian really liked and consistently stared at so the specialist is sending the doll by mail along with some baby sunglasses (Christian really hates when the sun is in his eyes). So Christian gets a mail order girlfriend soon and cool new shades! I'll post pictures when they arrive.

Something is changing in Christian.

I looked at him today while in the HBOT chamber. He was all sprawled out over my lap and sleeping. Somewhere, sometime, somehow in the last few weeks my baby turned into a toddler. He's so big and little boy looking. And the reason he's looking so long is that he's not all tightened up. It's like his body, with it's loosening and unwinding, has grown into a toddler and now we see it.

His body is laying differently, almost normally. I can't put my finger on what exactly is causing this change. In the last two weeks he started HBOT, I've been concentrating on more lower back stretching, and practicing more weight bearing exercises with him. We also did cranial sacral in the last few weeks. Herein lies the mystery - what's working? Is it one single thing? A combination of everything? Does it really matter? Something is working and that's what matters. Overall, one thing I can be sure of is that God is working. Whether God's working through others or just going solo, it's all good.

So what are these changes? He's holding his head more midline rather than arching or over extending to the right. In fact, not only is he holding his head midline, he's moving his head back and forth to look at things...intentionally. And it kind of seems to have happened all of the sudden so I'm holding my breath to see what the next day brings. It really can change from day to day.

Christian's also moving more. He's moving his arms and hands to grab at things - especially humans. That sounds funny but if someone is close to him, he will search for them with his hand so he can feel them.

Christian's tone has improved so much that when the PT came to visit today, I decided not to say anything to see if she'd notice. I waited about 5-10 minutes into the session and she started to talk about how relaxed Christian was and how much his tone had improved. Ahhh, validation.

It's times like these I can see Christian coming back to life. He works so hard, harder than anyone I know.

7 comments:

Lucy and Ethel said...

It's always such a treat to come hear and see such exciting updates!

'Lucy'

Jendioguardi said...

Yay!!! Everything is coming together. Christian is so well. I'm so proud of all of you. You're doing an amazing job. I love his new profile picture. What a handsome young boy he's becoming. <3 it!!

Anonymous said...

I just love reading your blog...so inspirational! We have never met in person, but I came across your blog and am hooked! I love reading about your little/big fighter! I wish you and your family all the best! Many Blessings!

Alicia said...

I am just loving the great news. Take it one day at a time and he'll show you exactly what he can do! I love the mail order girlfriend, so funny!

I also love how you say that you aren't sure what is working, except you are sure GOD is working. So beautiful!

Blessings, friend!

Anonymous said...

Hi you guys! I haven't seen you in quite a while. Obviously we have complete different times in the chamber. But I am so happy that Christian is improving!! Just keep fighting and supporting him in everything. He will get so much further!!!!
big hugs from us
Angie & Ryan (Northstar HBOT)

Sarah said...

Shauna reading your blog brings tears to my eyes all the time (happy tears)!!! Christian is doing so well((hugs))

Wendy said...

Hi Shauna, I've been following your blog for a while now. Like you I have a son who nearly drowned. My boy's accident happened in September. He was blind but his vision has now returned, I'm not sure whether it was the flash cards, the disco balls, the fairy lights, the christmas decorations or, as my neurologist forever tells me, something that would have happened anyway... who knows. Anyway I think about Christian a lot and pray that whatever changes are afoot with him they continue to happen. Wendy

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