Monday, October 12, 2009

Endocrinologist Success

We have made progress in the Endocrinologist hunt. I contacted Dr. Jennifer Miller out of Gainesville, FL today. She was shocked to hear I couldn't get in to see an Endocrinologist in my area until February. She said that is too long to wait. We need to get Delilah on Growth Hormone Therapy (GH) A.S.A.P. She was very friendly and eager to help. She is going to work with our insurance and get the ball rolling on the GH. She is also going to contact some of her colleagues and friends in Birmingham to get some of our tests completed so we can fast track the GH. Delilah has to have a sleep study before we begin. 

I am very excited to work with Dr. Miller. She is one of the three leading Pediatric Endocrinologists in the US who specializes in PWS. She comes highly recommended from all the other PWS moms I talk with. She is kind enough to work with us long distance. She would like to see Delilah, if possible, in the next 6 months so my goal is to make a trip to Gainesville after the first of the year.

The best part about working with Dr. Miller are the PWS clinics she holds in Gainesville. Not only will it be a great opportunity to see different specialists all in the same day, but it will also be great to meet other parents of PWS children. Right now, I only speak to other parents via the web. There are no support groups or other families that I am aware of in the immediate area. I am waiting on PWSA to start an Alabama State Chapter so that I might meet some other families in my area.

I will keep you all posted on the GH. While I am not excited about administering it (she will receive a shot at night, every night, by me or John), it will help her gain the strength she needs. We will do whatever it takes for her to grow up strong and healthy. 

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