Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: April 3, 2002

BMT + 1

Robert had a much happier day today. He woke up happy and enjoyed having company today. Monaca, the physical therapist came by today. Robert really didn’t want to cooperate until I pulled a new toy out of the bathtub (I finally found a use for the bathroom and especially the shower; it makes a nice toy chest). It was a school bus with people to put in it and a video to watch. Robert stood for about 20 minutes and sat in his chair for over an hour. A new friend, Sumphet, came by to see him. She is going to come by in the mornings so Mark and I can try to run in the mornings. Robert liked her a lot and was showing off to her all morning. Then Chatra and her mother Jenny came by. Chatra went through a BMT at the same time Robert did last time. She was here for a treatment today and then stopped by to say hi. Chatra looked great with short curly hair.

G’ma also came by to spend a little time with Robert and allow me to get outside a little. Robert liked having his Grandma to boss around for a while.

Robert’s blood pressure was much better today. Probably, all the fluid yesterday increased his blood pressure. Today, he had nefedipine and amlodopine. Both of these blood pressure medicines really helped. His last reading was 125/86.

Dr. Horn was very pleased to see that Robert does not seem to have any mucositis yet and he ate cheese today and sipped some cola from a can. They still started him on TPM tonight.

Robert’s favorite nurse was here tonight taking care of Robert. She has become an old married lady since she took care of Robert last time. Cara was his nurse when he was transplanted the first time.

Aunt Michelle sent Robert some of his favorite books and he really enjoyed looking at them tonight.