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Thursday, February 4, 2010


Thank God Christian has had a better week. He's back to normal, not irritable, waving his arms around, nice and loose. It's such a relief, a deep breath. He's also been moving his head back and forth more, rather than keeping it in one position. And thank God again! We're finally making headway with his tone in his lower half. Finally we have some relaxing in his legs and I'm happy to report it's been consistent, not just a day here and a day there. After five months of no changes in his legs, we have change. Just another lesson in patience and putting the pieces of this puzzle together.

Christian also visited his pediatrician for the first time since September. I was a little worried because when we went to the Botox consult at the neurology center a few days ago they weighed him and they said he weighed in at 24 pounds. That didn't make sense to me. And we always have to weigh him the nontraditional way - me picking him up and getting on the scale and then just me on the scale equals Christian's weight. There's all kinds of room for error here because you have to rely on the math skills of the nurse. Not that nurses can't add and subtract, but when we're trying to do a bunch of things at once, subtraction all of the sudden turns into calculus and it's like...uh, what, how do you subtract again? I'm speaking for myself so I can only imagine what it's like for a nurse. Point being that I was thinking 24 pounds didn't seem right.

That's because it wasn't. Today he weighed in at 27 pounds and his length is 33.5 inches. He's a big boy! And I'm so happy he's putting weight on! The pediatrician seemed happy with his numbers. It's one of the things that is so hard to pin down because, yes, he's still throwing up, but no where near as much as before. And sometimes not at all. I've increased his calories just a tad to where they're actually supposed to be. This is so important because Christian needs calories so his brain will get better and so he'll continue to thrive. So my boy is solid, we knew that just by looking at him but it helps to have the numbers back it up.

We also had the IFSP (Individualized Family Service Plan) meeting. This is a review of Christian's progress and medical necessity. It's basically a meeting to track Christian's medical need in order to justify his services to the state. It's a meeting from the Early Interventionists and the vision specialist joined in, as well. Christian has a really great team and they're all super helpful. The vision specialist will be coming every few weeks to help with exercises to improve Christian's vision. Another visitor, but a very welcomed one. Speaking of vision, we've been using the baby shades in the car. When we pick up Gabe from school in the afternoon, the sun is always on Christian's side and in his face on the way home. He would cry all the way home. Now he has his baby shades - they're sunglasses with a strap that goes all the way around his head - and now he's quite content. I love when stuff works!

Another appointment...yes, another appointment. We saw Dr. Peters for Cranial Sacral therapy and while Dr. Peters was working on Christian's pelvis Christian lifted his leg all the way up and knocked Dr. Peters' glasses off his face! I asked him, "Are you doing that?"

He said, "No, that's him...I should have removed the glasses before I started."

Next week we'll be getting a second opinion on Christian's hips from another orthopedic surgeon and we're still waiting for authorization for the Botox injections. I want a second opinion, not because I doubt the doctor's opinion or credentials. It just bothers me that there wasn't a second set of x-rays taken to make sure everything was accurate.

And we're getting a stander! Yipee! I can't wait because just by the standing exercises we do here at home, I've seen a difference with him. It's like he felt his legs for the first time. This is when I started to see his tone change and I also started to see real movement in his feet and legs. So I'm excited to see him in his stander and I'm excited to see how he'll react.

It's been a crazy week of appointments and phone calls. But it doesn't matter. As long as Christian is comfortable and happy, bring on the craziness!


Eliisa said...

Yay for good things. :) PS: the quilt is coming together and it's looking soooo cool! I can't wait until you guys get to see it!

gavman306 said...

Amen Shauna!! What a great post, loved it!!!!!! I wanna see some pics of the cool dude in his shades! SO happy to hear about the stander, that's great! Continued prayers for you all!

Anonymous said...

I feel so much better when you feel better because Christian feels better! Love you.

Mandy said...

I read your blog with every update.
Have you seen this blog? THe accident just happened a week ago but I thought this family may need your experiences in time.

sunflourchic said...

so glad that things are getting back, i think the same thing happened here. crazy, fussy babies! i also saw the blog that was mentioned above and immediately thought of christian. maybe we should send them the link to your blog so they can see how great christian is doing. you are an inspiration shauna!

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