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Back from Florida!

I know everyone is just dying to know how our visit went, and I am just dying to tell you! It was the best experience ever, more than I could have ever imagined. Dr. Miller took us up to her clinic area and we sat in a room with her and Christy, the Dietitian. Our appointment was for 9:30 and we talked with them for over two hours! We left at 11:45. First we told her our story, and then she laid everything out for us. She went through all of the stages of PWS in detail, and we just casually discussed questions and concerns. There is nothing that she does not know about PWS, it is truly her passion. She is a research doctor too, so she is up with all the happenings on the research. Dr. Miller even sees patients from other countries!! She said Cade looked great to her, and she was very impressed at how active he was. She is very proactive and positive. She said that Cade will be just fine in society and there is no reason to think he won't. If we follow her and her team's treatment plan he will succeed. Disciplined parenting skills are key  and she said to not lower my expectations for him or let his "Syndrome" label him. PWS does not define who Cade is. He will get started on GH as soon as it goes through the insurance company. Early diagnosis, Early Intervention, and early treatment with Growth Hormones aid greatly in there development. We are very lucky to have all three in our favor. They said Cade was a little small, but a new formula recipe should help that. So, we will see her about every 6 months and in between visits talk by phone and e-mail. Cade will have to be monitored by a pulmonologist while on GH, and she has a friend in Baton Rouge. That works out great. It is really hard to even describe what the visit was like, it was just that great! I am probably leaving out so much, but if I remember anything else I will post!!! :)

Comments

  1. UnknownJuly 18, 2010 at 4:32 PM

    OMG!!! That is SO awesome to hear...Seems like she has so much positive and encouraging words for ya'll along with a great treatment plan! Can't wait to hear about his progress as time goes on!

    ReplyDelete
  2. Pam StringerJuly 18, 2010 at 7:18 PM

    I am so happy. I glad to hear the good news. It all seens so promising

    ReplyDelete
  3. Maegan0514July 18, 2010 at 8:23 PM

    Yes you guys it was a great visit!!!

    ReplyDelete

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