Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: July 8, 2002

BMT + 98

My how time flies when you are trying to get someone to eat every minute he is awake. Robert has lost all interest in food and liquid (except for diet coke). He has gotten thin over the ten days we were at our beach house and now we are all being challenged to find ways to get him to eat more. He is actually much better at taking his medications than he is at taking in food. So the other kids developed a new game today and this game uses syringes instead of game pieces. Everyone has their own syringe (with of course their own name on it) and they can fill it up with their favorite liquid. We each take turns drinking from our own syringe and all the others sit around and cheer the one slurping. Robert gets a big kick out of this game and hasn’t realized yet that his turn comes up more often than everyone else’s.

This e-mail has to be short because my screen is dieing and I have to type through psychedelic snow.

I hope you all had a great Fourth of July; we sure did. My brother Tom and my sister-in-law, Nancy and their two sons joined G’ma as well as Uncle Dan and us. I was thinking back to our last July 4th and remembering that that was the first week Robert and I spent in the hospital for his first transplant. He was getting his central line put in and they were running his busulfane studies. In ten days, it is one year since Robert’s first transplant occurred.

Counts