Wednesday, May 14, 2014

health update

Molly and I have spent a lot of time at the Doctors this past month and there have been plenty of appointments with nothing but grim outlooks but this week we had two really good appointments.
Monday Molly had an appointment with her cardiologist and the hole is still there but other then the size of the hole and a slightly enlarged left ventricle she looks good. Her growth is their number one concern at this time and she is growing. Because her Dr. is so pleased with how she is doing we don't have to go back for another EKG and Echo for another month. It's amazing how we went from her first appointment where he was certain she would need surgery at three months to this last appointment where he just wants to monitor with the possibility of not even needing surgery if she continues to do so well. So as for her heart we will continue to play the waiting game and see how things go. 
Today we heard back from her galactosemia test results and we were able to talk with the specialist in Austin and her body is producing about 15-20 percent of the enzyme needed to break down lactose. So as for now we will continue to keep her strictly on soy formula because anything else would be to much for her body to break down and become toxic. In 5 months (October) we are going to Austin to meet with the specialist and he is going to run some tests to see how well her body tolerates lactose. Those tests should give us a better idea of what her needs are as far as her future diet. As the liver matures it is able to process things better so there is a hope that as her liver matures (it won't ever create more of the enzyme) it will be able to handle very small amounts of lactose so an accidental ingestion of something dairy won't be as toxic as it would be now. Basically we won't know anymore for the next 5 months.
We do feel blessed and like our prayers are being answered. She is a strong little girl and we love her so very much. We feel blessed that she has so many people who love her and are concerned about her. The outpouring of love and support for both us and Molly from friends (especially those here in Corpus) and family has been  wonderful. So please continue to keep her in your prayers because it is working.

1 comment:

  1. We love her so much and we're so glad she is doing better. You're all in our prayers. -Chace