Kris took her in again today. This was for IVIG. It was a long day. They were there from 8:30am until 5pm. She did pretty well. They gave her the sleepy benadryl but she fought it today and refused to sleep. She made a friend there that played games with her most of the afternoon. She said she called her "Grandma" because she was older and looked like a grandma. She was one of the Child Life volunteers. They come in each day to see the kids and play games with them and keep them happy.
In evening Haven was super tired and just worn out. She came outside for a little bit and just kinda sat slumped in the chair. I was able to force a couple pictures out of her to show off her new stuff. She got a new Haven Pink shirt from Grandma Sing and Grandpa BeardOff. Then her Uncle Kevin and his girlfriend Annie sent her an Ocean Princess shirt and matching card. Below are her pictures. She was in and out of sleep. I slept in her bed all night with her. She kept her hand on my face the whole night - making sure I didn't move.
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...
Havey looks tired; guess I would too. The shirts are very nice and I know she likes them; again I wish I could be there; it's just not possible. I can barely dirve out of town and surely cannot make it to MA. I hope this computer hangs in; it is the only way for me to keep in touch. Gram was asking about news, Let Havey know I am watching on the computer.
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