Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: April 26, 2002

BMT + 23

Robert had fevers most of the day. This was unusual; most of his fevers have been at night. He felt pretty miserable all day. The only number that looked worse today was bilirubin. Dr. Lieuw said the bilirubin could have been high because Robert had a red blood transfusion early in the morning yesterday.

Robert had another ultrasound today. His liver and kidneys looked pretty good but there was inflammation of the small intestines. They made Robert NPO, a dreaded word for most parents; no more food and drinks. Of course as soon as he can’t have liquids, he starts yelling, “Mom” and “Water”.

Dr. Cowan brought Robert back a baseball hat from his trip to Boston. At 2:00 a.m., Robert starts yelling, “Mom” and “Hat”.

Uncle Dan stayed with Robert today so that I could go to lunch with Ping (JoJo’s Mother), and Parris’ parents’ Brenda and Brian. We had a really nice lunch.

We have to hope and pray that Robert can get rid of these fevers.

Counts