Okay so some updates...
Yesterday (5/22) I took Jordan to have her Upper G.I. (checking to make sure her stomach and her throat are all working fine). They said everything looks fine but it seemed that the barium took a long time to move from the small intestine. No big deal - we'll find out more details at her follow-up appt. They also did a swallow study, where they had me feed her rice cereal mixed with barium while they used an x-ray machine to see what happens to the food as it goes into her mouth (does it go up into her nose, does she breathe it in, etc.). She did great! It's kind of weird that the first time I'm spoon feeding her is while she's strapped to a chair with an x-ray machine and five people watching. She was a champ! She was so tired yet still drank that barium down - even while it was pouring out her nose since they had her drink lying flat.
Today (5/23) we took her to UCLA to meet the infamous Dr. Neil Ford Jones. He asked detailed questions, looked at the x-rays, and said that he's "willing" to do the surgeries. When I asked him if he could honestly say that he is the confident that he can do this he basically said that he is competent but not confident. I can appreciate that. As for the original "plan" to remove her thumb, Dr. Jones says no way. He and his residents said absolutely not to remove the thumb. They said that she has enough muscle to grip and that they wouldn't even consider it.
Here's the new "plan" as Dr. Jones sees it (the best that I can summarize it):
Around 1 year - He will separate the index and middle finger of her "bad" hand (look at the third picture down on the last blog I posted). We will hopefully coordinate with the UCLA Cleft Surgeon (Kawamoto or Bradley) to do the palate through them at the same time. Dr. Jones will also separate her toes then (poor prognosis though becuase toes tend to reattach after time).
Closer to 2 years old - He will monitor the amount of use and movement she has in those two fingers. His best guess is that they won't be of much use and will just "get in the way." He's thinking he may then have to remove them (yes, remove her index and middle fingers) and she will use her pinky and good thumb (on her bad hand) to pinch with. He will also, at this time, probably use a bone graft to add length to her short thumb on her good hand.
I know it's so confusing and hard to explain. Explaining it in person is much easier.
That's our update for now. We're tired and it's been a long day but we wanted to send a note for those of you checking in.
Oh! I almost forgot - we went to lunch in Westwood Village today (so fun) and little Jordy sat up all by herself in the highchair! Yay! Such a big girl!!! She loved chewing on the edge of the table and her plastic spoon we've been letting her chew on while she's gearing up for the big feeding of rice cereal she's about to get...finally!