Posted by Sian on 3/3/2008, 3:48 pm, in reply to "Bad day... just blabbing!"
65.67.32.222
Sorry you've all had such a hard day. My son had the blood tests and skeletal survey done when he was 6 weeks old. I'm sure that was far easier as he was smaller and so co-operated a whole lot better (he slept through most of it!). Our geneticist wants us to have another done in 6 months when he is 2 in order to compare the 2 and see if there is any difference. His intial survey was "clear" - hopefully you will get the same prognosis. I'm sorry she had to have the swallow study - at least you will have a clear idea of what is happening when she eats. My son is 18 months now and doing well - although he already has a dislike of anyone wearing scrubs, and will NOT open his mouth for anyone wearing gloves or holding a light of any kind!
It's tough, but hang in there! I've been told others who have been in our shoes before that oneday these times will be a distant memory!
Sian
--Previous Message--
: 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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