Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: May 29, 2002

BMT + 57

I may have used the “H” word too soon. Today I got the impression that I might be the only person talking about going home. If I think carefully about all the conversations with the doctors, they centered on what must happen before Robert goes home, not about how soon he might go home.

They did start reducing the TPN today. Yesterday, he received about 48 ounces and today he was given about 42.5 ounces; not enough of a reduction to make him terribly hungry. They will keep him at this level for three days. When Uncle Dan was here I went to the grocery store and bought cocoa puffs, marshmallows, fruit snacks, cheese string and yogurt (sounds like Matt’s favorite meal). I had to force food on Robert. It didn’t seem to hurt him to eat it but he just wasn’t hungry. He rather play throw and catch with a ball.

Robert did sit up a lot. While my friend Clari was here in the evening I put on Angels in the Infield and Robert asked for the dance seen, “Again” and then “Again”. The nurses said we now are sure he is getting better.

All Robert’s liver numbers were slightly better today.

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