Miss Haven had her check up today since being released from the hospital. They are very happy with everything directly related to the treatment. She is still climbing in weight and is right now at 81 pounds. But her blood pressure and glucose are stable. She hasn't been sweating or having weird temperature issues - so we're happy with that. The sleep walking is starting to calm down - it usually takes a couple of weeks after these hi dose medications.
She will spend next Friday at the hospital for the day getting IVIG but she's excited because she is going to dress up for Halloween that day. All the doctors and nurses are dressing up.
Then on November 5th she will go in for her MRI of the abdomen to check on the Neuroblastoma tumor. There is still a small amount that remains but so far it has not grown or shrank. I have requested to also do an MRI of the brain to check for any possible tumors. Some ROHHAD children have had tumors develop in the brain as they get older.
Then on November 6th she will be back in for lab work and a review with her doctor.
I honestly think she likes to go to the hospital now. It gives her something to look forward to and some where to go where everyone wants to talk to her and play. I am asked every night before bed if tomorrow is a doctor day.
Saturday we are going to try to go to a pumpkin farm and pick out a pumpkin. Haven has not been to one since she got sick in 2006. I hear it's going to rain so I'm keeping the fingers crossed.
If you read over in my spot we will be sharing the family expansion news this weekend. Haven has been wanting to tell everyone.