Posted by Laurie on 3/4/2008, 6:01 am, in reply to "Bad day... just blabbing!"
68.42.17.172
Becky,
I am also sorry to hear how long and frustrating your day was. While CHOP is a superb facility, it can still feel like a cattle herd sometimes. It feels as though doctors are withholding info sometimes, doesn't it? That makes no sense, but when you are overwhelmed and you're not sure what's going on, nothing seems to make sense.
I do have a question for you. My son was diagnosed with Stickler via genetic testing while he was in the NICU after birth. Why the bone scan? Was genetic testing done? If not, why not? And if yes, then why the bone scan also? I'm just confused and appreciate your help...
--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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