Friday, June 22, 2007

Somber notes...


Psalm 112:7

He will have no fear of bad news; his heart is steadfast, trusting in the LORD.
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(Somber tone)
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The genetic counselor called this am (finally)...
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Tim and I's chromosome studies are back. To my suprise, I carry Owen's strange chromosome deletion. So, in essence, he is missing part of his chromosome, because I am missing it and didn't have it to give it to him...I know we always knew I was a freak but now it's been proven:-)
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What does this mean?
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Essentially, nothing. Since I'm "normal" (he, he, he-evil cackle) his deletion is too. So, his differences are caused by some other unknown. Back to the drawing board.
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(Even more somber tone)
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She went on to say that the skeletal survey taken shows signs on his spine of a metabolic disorder but they are still waiting on the test results to see which/what disorder he may have.
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So, what does this mean?
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For once, honestly, I have NO idea. I was so dumbfounded, I didn't think to ask what "metabolic disorder". His growth hormones are reportedly normal.
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On another somber note...
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Still haven't got the band back on full-time-and certainly not for sleep hours, which, in my opinion, seem to be the most imprtant time for him to wear it. But we are trying the so-convenient schedule of 2-3 hours on and then as many hours off as necessary to have his reddened area to fade to prevent the skin form breaking down again.
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On an even more somber note...
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The dieting coontinues....miserably.
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No, not so. It's not so bad. It's just depriving. I have done well (for me anyway)...just mourning the eating out and sugary snack era. But, I have lost some weight already, which I know I shouldn't be watching-but I am. Ultimately, it is not about the weight, nor size, but the health effects/benefits from being at a healthy weight. Weight watchers was recommended to me by my Doctor who is giving me 6 months to do the weight loss/cholesterol lowering thing "on my own" before slapping me with pills. I am not on weight watchers yet b/c of funds-it's expensive to do things like that. Plus, I don't know if the meeting thing is for me.
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On a really positive note...
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We are all doing well. The boys are healthy and enjoying the summer with lots of time outdoors. Lots of bumps and bruises daily with bike crashes, stubbed toes, and even mystery torns and splinters. We all love watching Owen discover new things each day. We have OT added to Owen's PT regimen for his left sided weakness and deficits...plus, this should evaluate why he can't handle clear fluids (we thicken his formula). We did get some bikes, so we are trying to enjoy bike rides as a family. I enjoy it, I'm just SOOO outta shape. The boys are in their home stretch of vacation bible school (VBS). It's Jakes first year and it's so much fun to see his eyes light up when he talks about the activities, snacks, and other kids-he calls "friends"...wouldn't it be nice if we called all the people we met "friends"-aren't kids great? TJ is having a good time trying to get various neighbors to attend with him each evening. I would love to say that it's been a relaxing and enjoyable week, but I have worked or done shows each night, so it's actually been crazy and hectic.
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Hope everyone has a wonderful weekend!
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Enjoy our "hand drawn portraits" from our Chuck-E-Cheese trip today!



1 comments:

Steve & Molly said...

Hi Renay,
I have been reading your blog and praying for your family ever since FBC put the address out on the prayer e-mail when you were still pregnant. I have never commented before b/c I didn't know if you would remember who I was since we really didn't know each other before we moved away 3 years ago. (But, I remember you were in the hospital with Jake when our Natalia was born...I think maybe he was in NICU?) Anyway, I just wanted to encourage you to keep on keeping on. I know God has been giving you lots of growing opportunities lately, but remember...as Pastor Goode used to say, "God tailor-makes our trials just for us to help us be most like Jesus Christ!" Isn't it wonderful that we have a God who loves us so much? I also wanted to encourage you with the diet issue...I know, it is hard! (and that's an understatement!) I appreciate your honesty about it. Have you checked into the South Beach Diet? I was doing that before I got pregnant (am now 3 months along) and lost 25 pounds in just a few months. My mom has continued on it and lost over 35. The first two weeks are hard, but after that you are in a second phase which is much easier. You can find the info online through Google and you don't have to go to meetings, so it only costs the difference of the foods you are buying to fix for yourself. I will continue to pray for you all. Your little Owen is an absolute doll! Keep your eyes fixed on Jesus! Heb. 12:1-3