So we have a new Endocrine doctor. I'm becoming a pro at new doctors. She has worked with a ROHHAD child and understands the ins and outs. I have all of Haven's latest labs printed out. Her last Endo doctor wanted to get her on Growth Hormone shots immediately as she is seriously low. So I will bring all of these labs with me and hopefully have a great discussion.
We hope to get on a good routine with this Endo doctor and hope Haven likes her. We are also waiting on Pulmonary to call. This is just because we haven't had a sleep study in two years and it's time for another one just to get a base line reading.
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Hi everyone. It's been a long time since I sat and wrote about our daughter's extremely rare disease diagnosis. Literally 15 years a...
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I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child...
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