We've got a busy month - not including Christmas and preparing for Haven's 5th birthday party. Which she has already been informing us of how we should decorate and what we should cook.
Dec.- Meeting to have her back examined and X-rays of the lower back (see post below)
Dec. - Flushing of port and lots o'lots of blood work - Meeting with Oncology doctors to review everything
Dec.- Meeting with Dr. Cooper to review everything and at closing JH Riverside is having a Christmas gathering for Haven. They have been working hard on a special Christmas for Haven. We saw the posters and Haven's pictures all over the doctor's office.
On Call for Sleep Study. They could call at anytime with a 1 hour notice for Haven to go in for her 24 hour testing.
Pulmonology - I just scheduled this to check for results of her Sleep Apnea, Hypoventilation testing, and examine for ROHHAD-NET.
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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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