Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: June 23, 2002

BMT + 82

Matt had a very big birthday party today. It was hard to leave Robert behind when we left for the park to meet all Matt’s friends and many of our kids’ cousins (Guy, Sophie, Grace, Mia, Dan, Bo, Julia and Tom). Matt finally felt he had his real birthday party with all his friends, a jumping room that deflated with kids in it, a pinata that did not fall apart until every child had hit it and a couple of the kids watching were hit, a half a sheet cake that was totally devoured in ten minutes and enough toys to improve Toy R Us’ revenue outlook for this quarter.

Tonight at church, I was able to tell the congregation how well Robert was doing and to encourage them not to stop praying.

Mark developed a great medical chart for me to use to keep track of the medications. It is a checklist I can just work through during the day. If anyone needs one, let me know.

Counts