Well we finally got to hear something good. Even tho I'm still having an extremely hard time believing it. But Haven is down to 53 pounds from 61 pounds. We're hoping this is a sign that maybe the tumor has slowed down in production of the weight hormone which could mean it's growth is slowing. I don't know. But we're pretty excited about it.
Our secret: Snack time is sugar free jello with only 10 calories! :)
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.
Subscribe to:
Post Comments (Atom)
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&...
-
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...
-
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&...
No comments:
Post a Comment