I have not been able to update Haven's blog in a while. We've had many visitors this past week - Grandma Virginia, Grandpa Simon came out on the 7th of March and stayed for a week. Then Grandpa Beard-off came out on the 13th and stayed through til the 16th. Then I left for California on the 16th and am coming home today.
We had great visits and lots of pictures to share.
Haven is at Johns Hopkins today to have her Cyclosporin levels checked and Kris is taking her to meet with the Podiatrist about her surgery on her toes.
I will update everyone on the happenings as soon as I can get a little rest from the past week!
Time to sleep on the plane! Have a great St. Patty's Day!
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