Cast of Characters

Kristine: mommy, friend, wife
Web: daddy, husband, man of reason
Caroline: Sweet Caroline, daughter
Kelsey: Sweet Precious Angel, miniature schnauzer, ruler of the house, protector of family
Robert Joseph: baby boy

Wednesday, July 28, 2010

Spontaneous Mutation

Spontaneous mutation, spontaneous mutation. Those 2 words are in my head, all day long. I will be driving, reading, talking on the phone and in the back of my head all that I hear is spontaneous mutation, spontaneous mutation. Almost that if I say it enough, then it will happen. It will be the answer we are praying for every day. I was even talking to a friend on the phone the other day and told them this is way worst that waiting on Caroline's skin biopsy results. A. We knew it would take months. B. We had no date to expect the results. and C. Let's face reality, we knew no matter what the results were still going to tell us she had OI. No we weren't expecting the severity of it, but still we knew she still had it. With the blood results, we were told we would know when we are there next week. So, we have a deadline. We will know next Thursday if Caroline's OI was spontaneous mutation, or either Web and I are carriers. SCARY. I even emailed NIH contact this week to double and triple check that they received our blood. She said yes, and that our personal tech was already testing. YIKES! So I lay in bed at night staring at the ceiling and all I can say is spontaneous mutation. Like GOD will finally get tired of me saying it all day long, and just raise up his arms and say, "FINE! Just make it spontaneous mutation. SHUT THIS GIRL UP!" Of course, I know that won't happen, that this is all science that I do not understand. Testing that will make no sense to me when they explain it. All I want to hear are those 2 words, spontaneous mutation. You will probably be saying it by the time you read this blog! HA! So keep saying it, praying it, chanting it, signing it, whatever you think will work.

It's crazy to think that Web and I started this crazy journey of OI almost 9 months ago. It seems like it should be longer than that. But it also seems like we have so much more to learn. I am dreading our trip next week. Not the flying part, Sweet Caroline is a pro at flying. But the full body x-rays suck. Suck more for Web and I. But I am excited to meet with our physical therapist again. Hoping we can get some advice on crawling and walking. Poor daughter, she is wanting to crawl so bad, she gets on all 4's, looks up at Web and I then decides not to try. It's almost like she is saying, "Thanks, but no thanks. I like this view and will be just fine laying here." Most babies you can hold under their arms and they can stand on your legs, or by now at 9 months they are holding themselves up on a coffee table. Not Sweet C, not even close. Her femurs are so bowed, I don't know how she will ever be able to stand. It's so frightening to think about. So hopefully the therapist can give us some good tips and we can start reaching some milestones! Tired of reading all the baby books and seeing how far behind Caroline is doing.

Well that's all for now. I will update next week once we learn the next path GOD has planned for us. I really hope it's the original plan I already had in place!
SPONTANEOUS MUTATION!!

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