It's been 3 weeks since finding the virus and Haven still has it. She has to have 3 weeks consistent negative testing....so again we will start the 3 weeks over again. However, I can guarantee Miss Haven is still infected. This time we had blood in the sample and that really bothers me.
Haven's counts were on the lower side today - lower than they had been but I was told with blood in her stool that her counts would go down. Plus she is still trying to get rid of this infection as best as she can.
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...
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