Posted by Becky on 3/3/2008, 12:54 pm
140.254.7.254
Hey guys. I am in the "family room" at Childrens hospital. My daughter is one year old and has PRS. (no trach or feeding tube) She had her palate repaired a couple months ago and we came today for a swallow study. Well since we don't live close to Childrens we went ahead and made our genetic appointment today also. We went to that first and they are a little bit concerned. We had bloodwork done, to check the chromosomes. Then we had a complete skeletal survey done. Oh my word... that was soo hard. She screamed so bad and they xrayed EVERY bone in her body! 
They are doing that to check for sticklers. It was so hard to see her go through that and I just needed to share it with someone. I know you guys are always so nice. In about a half hour we go for her swallow study. She hasn't eaten since 8 am and her study isn't till about 4 pm. We are taking her to a big ole' buffet after this! She deserves it. From having her blood drawn and them having to "dig" for a vein, and then the xrays... and in a little bit the swallw study.. she deserves a buffet! SO DO I!! 
Anyways.. thanks for letting me blab!
Becky*
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