A few updates to note:
Next update is School. I met with about 12 people right before Easter at the school, including Haven's doctors and nurses. We discussed all the needs for Haven to attend school and what the school would require from the doctors. Happy to report that Haven will begin school on Monday, April 12th. She will only attend school from 8:30 - 11:00 am. Kindergarten is normally a full day (8:30 - 3:45). But will start out with a modified schedule probably through the end of the year. She will then attend graduation from Kindergarten in June! She is pretty excited but at the same time very very nervous. She will still have home care teaching her twice a week for 3 hours in the after noon.
This weekend we're going to work on her scrapbook to take to the school. She wants to show the kids where she's been the past few years and teach them about her treatments.
Lots of love to all!!!!
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!
ReplyDeleteCongratulations on starting school on Monday. I know you'll learn lots and make new friends. I hope you have a super-duper weekend.
Still keeping you and your family in prayer.
Bye for now!
With prayer, love & big hugs,
Wylene
What an awesome opportunity to get the word out about Haven and ROHHAD, etc.!
ReplyDeleteI hope it works out and you bet we'll be watching!