Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

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 “Dad!”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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