the international society for mannosidosis & related diseases presents:
Robert's Road to Recovery: the second transplant

Kathleen's Diary: May 26, 2002

BMT + 54
 

Robert continues in very good spirits and strong voice. (His neighbors and
the nurses are getting used again to him yelling !0 Dad !1 frequently.) Today
we had very good news, his GGT level was down. Also, his bilirubin
continues to be down. It really does look like Robert !/ s liver is turning
the corner, although it will take him stopping intravenous feeding (TPN)
and eating normally before he !/ ll be all the way back. Robert !/ s other
blood counts are down a bit today, and he may need a transfusion tomorrow.
Dr. Lee wants to wait a day to see if Robert can produce the blood cells
himself.

Robert and I are enjoying playing ball and other games. He !/ s getting out
of bed a couple times a day, and he has even stood up for short times with
support. He !/ s still not very interested in food, so it takes a fair bit of
patience to get anything in him. He is tolerating liquid food very well,
which is a good sign. We !/ re hoping he starts feeling hungry and thirsty
soon, so he eats normally.

Robert and I miss all the other kids this weekend, but hopefully it won !/ t
be too long before they get to see him in person.

Best regards,
Mark
 

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