Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: May 25, 2002

BMT + 53

I’m sorry that the update is late today. I wasn’t able to connect to email last night.

This is the first update I’ve written in over a week. What a wonderful change since then! I’ve had a cold and been at work, so I haven’t seen Robert since last Wednesday. He has improved so much since then, that it’s almost miraculous. He’s talking, smiling, and laughing. When I first came into the room, Robert gave me a huge smile and a big hug. Dr. Lee (and the other doctors) says that Robert’s behavior is the best indication that Robert is getting better. One good indication of how good Robert is feeling is that he pulled his NG tube (feeding tube) out of his nose.

Robert’s liver functions won’t get much better until he is able to eat normally, so we’re trying to get him to drink some fluids, and gradually work him back to eating so that we won’t have to put back the NG tube. Robert’s not real interested, although he has taken small amounts of water. We’re going to keep working on it. This morning Robert is sitting up in bed and throwing a ball with me. He’s also drinking a little bit of soda.

Robert’s bilirubin has dropped for the second day in a row. His GGT is still very high and rising slightly, but Dr. Lee isn’t that worried about it since the bilirubin is now going down, and the rate of increase of the bilirubin has slowed down. Seeing how good Robert is feeling, we really think Robert is now convalescing.

Best regards,
Mark

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