Haven did great at clinic on Friday. Kris said she was perfect with her port and Nurse Katie is back from a very long vacation and was able to access Haven with no issues.
Haven always does great the doctor. Her levels were a bit low so she is scheduled to have IVIG next Friday. Which usually takes about 6 hours to administer.
Kris talked to her doctor for a little bit. He told her Haven would not be allowed to go to school for at least another year. So we are in the final stages of setting her up with home school through the county. I haven't talked to any one from the school so I'm guessing they would come to our house. Especially since she can't really be around any kids right now. Once I have more info I'll update on that.
The doctors also got all our paperwork in to Make a Wish and Childlife has been working with them. I received a phone call that they will be coming to visit Haven on October 10th! So she has been reviewing what she wants for her wish. I just hope she isn't too nervous to talk to them.
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.
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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...
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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...
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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, Haven!
ReplyDeleteHope you pick something wonderful for your wish!
Sending you lots of hugs.
(((((((((((((((((((((LOTS OF HUGS))))))))))))))))))))
Bye for now,
Wylene