Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: June 2004

Robert’s Health:

Robert stopped both his monthly IV of IVIG last month after three years and his last medication, Acyclovir. His counts are phenomenal, white blood count 9.4 (never above 4 before transplants) and his platelets are 242,000 and they were always below normal at 120,000 before. He still suffers from some balancing issues but they are so much better than they were. He used to run into walls, fall over curbs and sidewalks and we could not trust him on stairs. His orthopedic surgeon has taken him out of his back brace for four months as a trial to see how he does. Robert’s back x-rays look about the same as a year ago. Robert’s still wears braces on his feet and fitted within his shoes. I keep Robert in high top shoes at all times. He is still not potty trained at eight years old but we are getting closer. This seems to embarrass Robert’s twin, Matt, because Matt brings it up to each person he meets. Robert has not truly been sick since November of 2002 and has not spent a day in the hospital since then.

Robert’s Schooling:

Robert attended a pre-school for hard of hearing children in between his bone marrow transplants. He was definitely one of the weakest and oldest students in the class. He enjoyed school very much but his behavior and learning ability was somewhere between 22-30 months of age even though he was six at the time. He knew some of his colors some of the time. He enjoyed singing the most and could repeat some songs. He had a one-on-one aid and he still had balancing problems. At the end of the school year, the teacher recommended he transfer to a total communication program, a program that used voice and sign. Robert was too old for the pre-school class but not prepared for kindergarten. In kindergarten, the students would begin learning their letters and reading. Robert was not ready for either.

This last year, Robert started in a total communication class that I felt focused heavily on sign. After four months, I felt that sign was not helping Robert. In fact, it seems to hinder his speech and he was speaking less and less. He had trouble signing; too many previous trigger fingers could not bend to make tough signs. I found he was signing words I could understand when he said the word and often he was using the incorrect sign.

Robert entered a severely handicapped class in May and seems to really enjoy it. He knows his colors but cannot count items. He is starting to ask, “Where’s dad?” and he gets his point across but does not use complete sentences yet. My husband believes that the damage that was done mentally may never be corrected but that Robert’s quality of life (and ours) is vastly improved. Time will tell how much Robert can learn over time. But there is nothing like having a healthy family and for the last two years all seven of us have been very healthy.

We bless Robert’s donor, Bob Heinis and his family everyday. They are part of us more than anyone can ever imagine.

Robert’s Personality:

Robert is still mostly a happy child, although similar in mental ability to a three year old. He does not like to share, wants everything his twin has, and is always louder than he needs to be. He is beginning to drop more of his signs and talk more.

Family:

I think our other children do resent Robert at times. On family outings Robert often requires at least one parent’s total supervision and sometimes both parents. When Robert is loud, he can be embarrassing but the kids seem to take it in stride.

Future:

We continuously take one day at a time. We are not sure what the future may hold for Robert. We are pleased with Robert’s progress, but I thought he would learn much faster and catch up; I need to accept that my expectations were not realistic. Robert’s twin, Matt is reading, telling elaborate robot stories, and fascinated with science. Robert is starting to show more awareness of people around him, where he is, and where he wants to be. We thank God everyday that we went through both bone marrow transplants to improve Robert’s chances of living a long and happy life. So far, it looks like our prayers are being answered.