Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: June 15, 2002

BMT + 74

Robert is sleeping through his Saturday afternoon (he received Benydril before receiving his by-weekly dose of IVIG) and I thought this would be a good time to write Robert’s update. Did you see how low Robert’s bilirubin and GGT are dropping? Dr. Menzer said it seem to me everything started getting better once the biopsy was done.

I showed Dr. Menzer that we had brought in Robert’s car seat today just to have it ready for his trip home. I told him we were planning to put it in front of the door but didn’t because I didn’t want to get Robert too excited.

I talked to Louise Levy, our assistant superintendent on Friday and she is going to try to set up Robert’s home schooling during the summer. I thought that was really thoughtful of her to work on this with such short notice.

Robert got his daily present from Aunt Michelle and really enjoyed it. He loves music and it was one of those new orchestra boxes. If he would only wake up, we could both play with it.

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