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Saturday, May 29, 2010


So we're trying this new feeding schedule that has Christian eating a little more in volume and more frequently throughout the day. Today was the first day and Christian did really great! Not one throw up, not even an attempt. The GI doctor informed us this is better than trying to pack everything into a continuous feed (small amounts every hour) over night. But I was doing this because he hardly tolerated daytime feeds and I could get the maximum amount of calories in him while he was sleeping.

Now he does GREAT with his feeds during the day so we were able to add more. This helps give him more energy and keeps his blood sugars level. Today was Day 1 and if it's any preview of what's to come I'll take more!

Now, it could have been coincidence, stars aligning, whatever, but Christian was moving around more today than I've seen him do in a long time. In the HBOT chamber I could hardly keep a hold of him. He kept moving himself into different positions so we had to keep adjusting. This is such a far cry from that last few weeks as I'm sure you can tell in some of the pictures. Frankly, he's zonked. It's the Vigabatrin. Relaxation and seizure control come at a price.

But now, I'm not sure if his body finally regulated to the dosage or if the new feeding schedule is giving him more energy or a mixture of both. It was so cool to see him a little more alive today. I bought him a pinwheel (Target...$1 - score on a sensory toy!) and he really reacted to it today. He was grabbing for it, looking at the metallic material, and even got it from one side of his body to the other grabbing the stem of the pinwheel (look at those tiny, careful little fingers in the picture). Now none of this was graceful by any means but who cares! He was actually more interested in this pinwheel than he's been in any of his toys for a long time.

Oh, Christian's wrists are also looser. I think it's the recent round of HBOT, honestly. I love that stuff. Before, you really had to manipulate and massage Christian's wrists to bend back so he could weight bear. His right wrist was really hard to bend and sometimes just wouldn't. Lately, we've had no problems, in fact, he's initiated bending his wrists, both of them, on his own.

I just love that kid. When I hold him, which is often lately because he's so content being held, and he's having a really good eye contact day, he'll look right into my eyes and it reminds me how very much I love being his mom.

I think this picture really says it all, don't you?

Awww, sleepy baby.


Alicia said...


I have been wondering if we should just take the leap and transition Rissa off her night drip but I am so scared of the vomit returning. Now is not the time, however, just before surgery. But if all goes well, we might be experimenting with this very issue come Fall. I am so glad it is working out for Christian!

As for not being graceful, I respectfully disagree. Think about the word and break it down: Graceful = Grace Full = Full of Grace. I see Christian's movements with the pinwheel as completely graceful. Full of Grace, God's Grace, without a doubt.

And that sleeping Mama's boy pic? Priceless!

Smiles, hugs, and prayers to you, friend.

ShaunaQ said...

Alicia - Thank you so much for that perspective! That is so true. He is the most graceful person I know for that matter! You are awesome, BTW.

Alicia said...

Awwww, thanks! You are awesome-ist, BTW! ;-)

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