Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: September 6, 2001

Robert’s Update BMT + 49

Robert is finally back home. His brothers and sisters came up to see his hospital room, and to help us pack up Robert’s things. It is amazing how much you can accumulate after 59 days in the hospital (not that we were counting). Robert was VERY excited to see his brothers and sisters, and he was even more excited to be home. On the positive side his counts are still good, and his blood pressure is under control. We do not have the engraftment studies back yet, and we may not have them back until next week. Robert walked some a couple of days ago, but it seems to have made his legs very sore. He didn’t want to walk at all today, but he crawled all over the house. This is not the best way to maintain a sterile environment, but we are washing his hands a lot. It will take time and physical therapy to get Robert back walking regularly again.

Tonight we are all together under one roof for the first time in two months. It feels great to be a family again. Since we will not be getting medical updates on a daily basis anymore, we will be sending out this update after we go to clinic on Wednesdays. If there is any dramatic event, we will update everyone. I do hope you still remember us in your prayers even if you don’t get an email every day.

Thank you, Mark