MRI - set for tomorrow at 9:30am (thank you Dr. Paz-Priel for getting the time changed)
This will only be for the abdomen to monitor the Neuroblastoma tumor to ensure it has not grown in size. We were not able to get the head added to this one but I have been told they will make sure it is on the next MRI. You can never be too careful with ROHHAD.
Haven is usually out of recovery with in an hour. So I'm guessing this MRI will be approximately 4 hours long before they leave the hospital.
IVIG - set for Friday. This is a 6 hour dose for Haven.
She will get this on Friday unless her counts are still good. She was originally scheduled to receive it last week but her immune system has been holding steady since Dex. We will not know if she is going to have this until about 9:30 on Friday morning.
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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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