Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: May 27, 2002

BMT + 55

I think Robert had a very nice day. He spent the day with Dad, Uncle Dan and then Mom. Dad bribed him into eating by playing ball with him in bed for about five hours today. Mark has also been able to get Robert to stand leaning against him.

With me Robert sang his “A, B, C’s” and said, “Over” when the video was over. We are still working very hard to get him to eat more. They will not stop the TPN until he starts eating more. Today he ate bout eight ounces of yogurt.

Today, there was a question what blood type Robert is; he came in AB and the donor is O+. Robert was getting platelets today and there were no AB platelets anywhere in San Francisco. The new attending, Dr. Kerper decided to type Robert and found that he does have A but no B anymore. Dr. Kerper said receiving AB platelets could be hard on his bilirubin if he has no B antigens anymore.

I brought the other four kids with Uncle Dan and I to San Francisco today and they were allowed to look at Robert through the window but not go into the room. We are afraid to have them seen by Robert. We are concerned about Robert being impatient to get home if he were to see his siblings. Uncle Dan stayed with Robert while Mark and I took the other kids to the Steinhart Aquarium at Golden Gate Park. We had a great time.

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