Showing posts with label Xaira VCFS Velo-Cardio-Facial Syndrome. Show all posts
Showing posts with label Xaira VCFS Velo-Cardio-Facial Syndrome. Show all posts

Thursday, January 11, 2007

Waiting for check up...


Saturday, I took my Granddaughter (with her Mommy and Bubby) to the Dr. for another ear infection. It's been a constant issue since she was tiny. This was not her regular Dr. and the exam was a bit different. This time they looked at her throat (hard to do when they're little!) making the discovery that she has a bifid uvula. You know, the hangy thing at the back of your throat...hers is heart shaped. The Dr. mentioned this casually and added that it may indicate problems with her soft palate. She didn't say much else, I guess since Mommy mentioned that she has already been refered to the ENT to look into tubes in her ears. Of course, Gramody, being the internet junky that I am, had to look into it... I found that there are alot of things that indicate there may be more to Xaira's health issues than we thought-and an explanation to some of the things that have come up. From what I read, this can be serious.
I printed off some basic info. and told my daughter to talk to the ENT and mention this stuff. He jumped on it and plans to look her over thoroughly on Monday. I tried to make sure that Aubrey understood that this is important, without scaring her... but I am worried. Xaira is tiny for her age. She was treated for reflux almost from birth because she had milk coming out of her nose. She is on her 10th ear infection in the 20 month of her life. She was a late walker. All of this seems fairly simple to accept one at a time, but when you look at her health history and put it all together...Wow! She may have a cleft palate. It's just not obvious since her lip isn't cleft. She does have a hemangioma on her lip-and it stops where the line is where her lips eventually joined.
http://www.vcfsef.org/
Regardless of what they find, she is a beautiful little girl with a stubborn streak and a funny sense of humor. She will get through whatever is thrown at her. She's a red head with attitude! I will update after Monday. I'm hoping for good news, but with what I've read...we can be glad that she's as healthy as she is.