ok....so I'm getting a little perturbed but not beaten.....
I have contacted probably about 15 hospitals now and have been dismissed by most of them. Not because they don't want to help but because they don't know anything about ROHHAD and definitely don't know much about it with Neuroblastoma.
Some hospitals have called and just said sorry we can't help you. But a lot of them have come back with referrals to other hospitals that I should check. One hospital told me that I need to specifically look for a specialist in:
Pediatric Autonomic Medicine
So this is what I'm searching for.
So far I'm waiting to hear back from:
Children's Memorial in Chicago - received an email from general nurse who forwarded my info to Dr. Weese-Mayer and I hope to hear something next week
St. Jude in Memphis
Mattel Children's Hospital - a branch of UCLA
Mayo Clinic in Minnesota
Haven's Grandpa B-off is checking on a hospital in Salt Lake City and also reaching out to some friends in the medical field.
Did you know the Mayo Clinic in Scottsdale, AZ doesn't even have a Pediatric department in the hospital? Is that not weird? I figure it has to be because 90% of the population are retirees! :)
Anyway, we've just be b-laxing this weekend and hanging with Grandpa B-Honey. Haven and I worked on beads and necklaces all day Friday. My hands were so cramped after 7 hours of sorting beads. She received a gift card from Laura to Michaels and we went nuts! :)
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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...
Havey I have been checking on you daily; sorry about your nightmares; I had some of the same when I was no feeling well; they will go away. You are not sick just have a lot of things that you have to see the doctor about so you just stay happy and play with mommy and Grandpa B. What was the name of the boy that sent you a letter? it was nice of him. C.
ReplyDeleteJosh has received alot of mail from kids that say things like that, too. He is not "sick" you know with a cold or something, but since he has to have a ventilator breathe for him some every day, and because of all the medicines they have him take (growth hormone shots) and go to doctors all the time and have nurses with him a bunch, they call that being sick. Josh always comments that he is not sick, either. :)
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