Texting Grandpa Beard-off in Utah.
TAPE TAPE TAPE! We've learned over the years of chemo treatments and taping tubes to Haven that she is allergic to tape. We always have the special tape at sleep study and have never had this issue.....but she is swollen and covered in itchy bumps.
With ROHHAD she shouldn't have Benadryl before bed....so we got Benadryl lotion to put on that won't make her sleepy.
Comparing where the leads were and the tape we know this was the issue.
Hopefully with the lotion it will go away soon.
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...
Hi, Miss Haven!
ReplyDeletePraying that your itching and swelling are gone and that you're feeling great.
Bye for now!
With love & prayers,
Wylene