We saw genetics on Tuesday. They are stumped. Her tests are coming back normal, she isn't following any pattern and her physical exam didn't reveal anything except that she is cute. (tell me something I don't know) It's amazing how much they scrutinize. They were measuring ear length, looking at the creases in her palms, measuring from the eyes to the chin, all sorts of random things that were suppose to give us clues. Nothing. I should feel relieved, but a part of me was hoping that they would say, oh, she has X syndrome and it just means that she will have a slow start but will be perfectly normal in the end. The good news is that they said they would give us a 3% chance of this happening to future children, which is everyone's chance. (I didn't realize that everyone has a 3% chance of a birth defect, that seems pretty high.) Not that I know if there will ever be baby # 2 in our future.
Good news is Lila is gaining weight nicely, she is finally in the 12 pound range. 12.1 to be exact. The force feeding and pure fats are doing their job. Maybe someday we will get out of size 1 diapers. No tube for now...
3 comments:
Im glad she is gaining weight. I cant believe she is still in size one diapers, that is crazy! She is so freaken cute and tiny!!
Kristi, you are amazing!! I dont know if I could go through what you are going through with Lila! I was home from the hospital with Zaylor when I read your first blog about Lila being possibly blind, and I cried for hours, holding Zaylor as tight as I could. My heart aches for you and your family! I really hope that one day this will be all like a bad dream. I love you!!!
Kristi, I hope I didn't sound rude in my post! It wasn't supposed to be in anyway shape or form. But, your blog is the blog I wrote about that 'inspires me' your strength in this trial is incredible. I really wish we could get together and talk more. We were told Jane would have Down SYndrome, or this, this and that. I had to see a specialist for months before she was born, with fluid at her neck and additonal fluid around a kidney. Lets just say we were also stressed. You want everything perfect for your children and knowledge is everything! I had her tested for some genetic syndromes when she was born and I got the same answers as you. "She tests normal." Sometimes it just turns out that way, there is no words the doctors can really say otherwise. it is frustrating. but again, I can't relate I would feel the same as you. Your amazing.
Go Lila! She's a rockstar-popstar/politician! Miss u:) xoxoxoxoxoxoxo
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