After my trips I took Haven in to see Pulmonary. We reviewed all of her sleep issues - seems to be the biggest issues she has right now. She has been sleep walking and even coming all the way down the hall to our room looking for us.
I really liked the Pulmonary doctor - he listened to me and he already knew about ROHHAD and it's issues. We'll see if he stays on the good list.
We have a sleep study scheduled for December - had to wait until after my next travel adventure. Then we will meet with him again in January. I'm going to have to find out when that was exactly - I have another trip planned from Central America during that month.
Once we get any results I will let you know!
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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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