update

[Guest guest]

Hi all,

I haven't been dropping in much lately due to various things going

on. I may have mentioned that had gone to VCU Hospital for a

genetics consult and the doctor said she didn't believe

really fit the criteria for CHARGE as he only meets one of the major

criteria. She called Baylor where he was a study participant, and

they informed her that he does not have the CHARGE mutation either.

She said she would write my insurance agency to ask them to pay for

another CHARGE testing for him as she said that the way that testing

is done for a study is sometimes different. So right now, we're still

in limbo.

had his first swallow study done today and he was WONDERFUL!

His new, wonderful gastroenterologist thought that reflux may have

something to do with his eating problems. They also did a modified

barium swallow to see if he had any swallowing problems. I was so

worried about how they were going to get the barium in him since he

only eats certain things and seems to have a strong sensory aversion

to things. I gave him the barium through a syringe and told him it

was medicine and he actually took it. He was sooooo good!! He even

ate his foods with the barium paste in it and loved watching his

skeleton on the video eating LOL!! It was so cute, his skeleton had

glasses on!! LOL The whole test only took an hour to complete and the

staff were so wonderful. The speech path said the test looked great--

no reflux, no swallowing problems. However, I overheard the

radiologist telling the speech path about an unusual artery. I don't

remember the name of the artery he said and I didn't hear what called

his attention to it, but he told her it had nothing to do with his

swallowing. So now I am worried about what that artery business was!

Anyway, I just thought I'd update and if anyone might know anything

about an artery which might show up on a barium swallow, please

share! I hope everyone had a nice Thanksgiving!

and the tribe in Virginia