Wednesday, January 15, 2014

Update on Prayer Request

Bug went to the geneticist last week. We did get some fresh information. They know of two other kids who have similar deletions like Bugs. There is some slight variations in the deletions. Unfortunately, that's all it takes to make it so different sometimes. The good news is that its the closes we have seen so far. The others have different symptoms and a few alike. They still don't think Bug has Kabuki Syndrome. It looks like it's a debate with some other kids also. 

Last year they came out with a new genetic testing that they would like to have Bug do in the future. Since the procedure is only around a year old the Dr. feels we should hold off until there is more information put in the data base. He is thinking in a year we will do it. The Dr. also feels that we should visit once a year now since her symptoms have changed so much since 2009 and also we have some other kiddos to base her off of-well somewhat. It's the most we have ever had.

Awhile back a few Dr.'s felt that Bug should be put on a feeding tube due to her failure to thrive an other issues. The feeding tube  didn't happen in the end due to some issues. The geneticist felt strongly about that issue and said, "that we should not put her on any feeding tube in the future with out the Dr. calling him first." He explained to me why and said, "he wants to be involved in the issue if it comes up again". He had some interesting speculations that made sense.

We still don't know much and I am okay with that. My prayer was that God's will be done and I trust that He is in control. The good news is that some information could come available in the future. We have a few immediate things that the Dr. wants us to follow up on but other than that we are hopefully done with it for a year with the geneticist. 

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