The appt with the geneticist was . . . well, it was interesting. I got the feeling that she was quite excited to have Brayden as a patient, and she said that while she had many "22 kids", Brayden was her first Guatemalan patient. The clinical diagnosis is Velo-cardio-facial syndrome, even though he doesn't really have the normal facial characteristics. She said that it presents differently in people of African descent, so maybe there are differences in Hispanics. . . I wouldn't be surprised if she's researching it right now ;) He does have, in the dr's words, "a great 22 nose". OK, what does that mean????
Anyway, we didn't really learn a lot of new info. We are basically doing everything that we should be (treating the ToF, speech therapy), but we just know some new things that we should look for and be prepared for in the future. She is sending him for a renal u/s next week, since there is a very high % of VCFSers who have only one kidney or have kidney differences. That is scheduled for Thursday, so I'll post about it next week. Of course, we had to make another trip to the the torture chamber (aka the lab). . . after 30 minutes, they gave up and told us to come back another day. So, when we go to the ID appt on Monday, we have to go back and try again. The geneticist is testing his calcium and magnesium levels, and she wanted to do a chromosome check to make sure that his other 22 is normal. We'll go to the lab after the ID appt, b/c I'm sure that guy will want to test something, too. At this point, I think they need to find a new way to test for things, b/c Brayden's tiny, deeply hidden veins are not participating!!
Bray Boy has had a runny nose for a few days now. Please don't judge me for these pics -- you absolutely cannot keep this kid's nose wiped!! He hates it, and he will fight you with everything he's got :)
Anyway, we didn't really learn a lot of new info. We are basically doing everything that we should be (treating the ToF, speech therapy), but we just know some new things that we should look for and be prepared for in the future. She is sending him for a renal u/s next week, since there is a very high % of VCFSers who have only one kidney or have kidney differences. That is scheduled for Thursday, so I'll post about it next week. Of course, we had to make another trip to the the torture chamber (aka the lab). . . after 30 minutes, they gave up and told us to come back another day. So, when we go to the ID appt on Monday, we have to go back and try again. The geneticist is testing his calcium and magnesium levels, and she wanted to do a chromosome check to make sure that his other 22 is normal. We'll go to the lab after the ID appt, b/c I'm sure that guy will want to test something, too. At this point, I think they need to find a new way to test for things, b/c Brayden's tiny, deeply hidden veins are not participating!!
Bray Boy has had a runny nose for a few days now. Please don't judge me for these pics -- you absolutely cannot keep this kid's nose wiped!! He hates it, and he will fight you with everything he's got :)
It's tough being a boy. Sometimes, I just need a power nap. . . I'll finish these apples in a few more minutes.
What do you mean? I don't need a bath -- snot, drool, and bed-head hair look good on me. . . 
Momma doesn't like it when I work on the laptp, but it's MY blog! She needs to recognize my position as editor! 
3 comments:
Love to see the new pictures, Krystal. He's such a handsome kid!
Wow, you sure have been busy and will continue to be busy with doc appt's, blood draws, etc. Thanks for the update. I continue to pray for your family and all this info that you're dealing with!
Don't worry--noone who has kids would judge you for having a drippy nosed baby! Sometimes it's easier to just leave them alone with their drips and keep them from having a sore nose from being wiped continuously.
All those appointments and more to come, I'll be praying for you guys. Appointment after appointment is emotionally draining, or was for me. Thanks so much for your donation on Evan's AHA site!!! Imagine my surprise - Bank night (turn in all cash donations) was Thur. night, our total was $1775.50 and then today my total amount listed had changed and I didn't know how until I came home and checked email. Thanks!!! I'll be posting pic's soon and news articles - we were interviewed today. Anyway, this is longer than I had originally planned but just wanted to tell you thanks a bunch!
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