Wednesday, March 10, 2010

Unexpected Wednesday

Yesterday Amber was supposed to have her second skeletal survey (full body x-ray) and chest x-ray. Well somethings weren't set up right so we didn't have the skeletal survey done and its been rescheduled for Thursday.
I have to say so far the worst testing for Amber has been the chest x-rays. They use a thing called a Pigg-O-Stat. Since its really hard to explain what this looks like here's a picture of it.
It looks horrible but its not supposed to be painful just annoying. For Amber its painful because she doesn't have that kind of range of motion in her arms, she has tight shoulder joints and any pressure on her chest is painful for her. The poor thing didn't do so bad on her first one but the second one she screamed so loud I could hear her through the thick door. This is the only test I can't watch :( From this x-ray they should be able to tell if her chest has become worse or not and possibly whats causing it.

Ok so that was yesterday! This morning during Early Intervention our geneticist called Luke. This is another reason I hate the Pigg-O-Stat! Last time they called us the next day to tell us Amber has dangerously thin bones and something needs to be done right away. This time they called to tell us she has a Diaphragmatic Hernia and will need surgery this week or next. Ugh talk about earth shattering. I really don't have details about how bad hers is. They said right now its just her bowels and not any other organs that are in her chest. I guess she's had the hole in her diaphragm from birth but nothing had moved up till now (probably because she has better muscle tone now and is using her stomach more). I don't have details yet the Dr's will be calling us back today to give us a time. I do know that it will be done at Mass General by a Dr that specializes in this type of hernia. Its not so much the surgery that I'm worried about its the anesthesia. With her preexisting breathing, weight and heart problem it can make anesthesia difficult to say the least.
The good thing is this explains why she has been choking so much. I don't know why this causes choking but it means she probably won't have to have a swallow study done.
Please be praying for us its not an easy thing to hear or have to go through. I know God will see us through!

Right now she is sleeping (a rare thing!) She'll only take a nap if she has her pink elephant blankie buddy its so cute!


  1. I'm so sorry to hear this. Will certainly keep you all & her surgeons in prayer. Bless her heart.

  2. Praying for your family & for Amber.

  3. I love this picture of Amber is so precious and she is soooooo beautiful! I miss you all! Sending hugs and much love.....

  4. Luv the pink "ellie"! Savannah has one still! She has her own backpack when we travel. :) So sorry to hear about her troubles...praying for all of you!
    Love, Jess