Haven had chemo today. She is doing well. She has gained 6lbs though. I wasn't happy with that. BUT good news is she is starting to grow - she has grown 1/2" since one month ago!!!! That's awesome. Blood pressure is great and all of her numbers are where they should be. No more infections.
I have a couple videos from tonight. They are Haven sleeping......this is what we go through ALL NIGHT, EVERY NIGHT!!! It gets worse around 2am!
Sorry it's sort of dark but she's sleeping. Click the arrow to play.
These were done around 10:30pm
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