Robert’s Road to Recovery Journal
Presented by the International Society for Mannosidosis & Related Diseases.
Kathleen’s Diary: May 20, 2002
BMT + 48
For all of you who flatter me and say that our updates are the first thing you read on e-mail in the morning; that you have to sift through the Viagra sales e-mails and the mortgage rate updates (if they come from my brother-in-law, Tim, you better not ignore them), I am writing you now so you will have an e-mail to read in the morning even though the only change in counts I have are platelets.
If you have not heard Robert Stark giggle, you have really missed out on one of the real pleasures in life. Robert has the cutest giggle and he has been doing it a lot this evening. We had a game coming into the hospital, I would say, “yes” and he would say “no” and then I would sing a song about it; I say yes, you say no, I say yes, you say no, no, no. I say yes and you say no. Tonight, I was in the way while Robert was watching Winnie the Pooh and he said, “I say No”. I know we are not supposed to encourage our children to say no but I clapped and jumped up and down.
The results came back from the scope on Friday. Robert’s lower colon definitely had had problems but is on the mend. There were no problems in Robert’s stomach. Robert also had an ultrasound and the technician did not see any obstructions. He did see a lot of sludge in Robert’s gall bladder. This can be from being on TPN (liquid food) for so long.
The doctors decided to add an additional immunosuppressant drug, a monoclonal antibody that will help fight inflammation. Robert will get Infliximab once a week. His steroids will be ramped down. The steroids are hard on the liver and the brain. We will start feeding Robert tomorrow. Getting food running through Robert’s system should help Robert’s liver, although he will probably be very uncomfortable for a while.
Brian Bender, Parris’ dad came by and sat with Robert while I went outside and had dinner. It is so nice to see Brian holding Robert’s hand when I return from dinner.
