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.
Sunday, February 10, 2008
Hospital Week
Getting out of bed to do the bone scan
They brought her a red wagon to go to imaging. She loved it - it's the first time she's ever ridden in a wagon. Was definitely better than the boring wheelchairs!
Back in ICU after a mistake by the doctors. She had to practice her breathing again.
Belaxing!
Talking up a storm with the doctors!
A few updates - as I've been extremely tired and no energy to sit in front of the computer. On Monday Feb. 4th Haven had a bone scan (which was a horrible experience) and they put the breathing tube in too deep which ultimately cost us another trip back up to the PICU for the night. However, Haven has an almost inhuman recovery time and was not happy about being back up there. She pulled her breathing tube out herself and yelled at her dad to get that "thing" out of her front buns (which is the catheter) and she wanted to have her red wagon back. They let her ride around in a red wagon on the 6th floor. After that was not too eventful. We were finally able to go home on Wednesday afternoon.
We meet with Oncology and the surgeons for post op on Friday the 15th.
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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...
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