Well....Haven has had some issues with her back and this morning at the crack of dawn was a panic wake up and jump in the car to Johns Hopkins. We got in and met with two doctors who throughly examined Haven's back and spine. The big concern was a possible fracture in the vertebrate due to all of her medication, steroids, lack of vitamins, and no milk for a year. Why no milk - we limit sodium due to steroids.
After multiple CT Scans and HOURS and HOURS at the hospital - seriously we didn't get home until dinner time - Haven's spine is fine. There is no sign of a fracture or displaced disc. So it seems as though we just need to watch her during activity and make sure she doesn't bounce a lot.
While at the hospital we received many calls from all different doctors.
Sleep study is now scheduled for tomorrow night. I have to have Haven at Mt. Washington by 8pm and then pick her up at 5:30am on Sunday morning. She wants her dad to stay with her so I will stay until she is completely hooked up to the machines. Probably get home around 11pm.
Haven's eye doctor called to schedule her eye surgery. We still need to discuss this. I told the doctors I didn't want any surgeries before the holidays and then with Haven's birthday only being a few weeks after Christmas I really don't want to do it then. But really when is there a good time.
Learning sustainability for our family and taking care of kids. Becoming a chicken mom in 2020! Our oldest- Haven, 17, was diagnosed with Neuroblastoma Cancer and ROHHAD Syndrome at age 3. We continue to battle these today.
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ROHHAD in Ireland
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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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...
We give Josh supplements of Calcium and Magnesium. We also have him drink a little fat free milk (with cereal and in coffee - which he likes). I wonder if the supplements and/or fat free milk might be okay for Haven, too.
ReplyDeleteAs for the sodium, we just have to encourage Josh to drink more water and other low-sodium drinks.