Robert’s Road to Recovery Journal
Presented by the International Society for Mannosidosis & Related Diseases.
Kathleen’s Diary: October 13, 2001
Robert’s Update BMT + 83
Robert looks like a little imp, with his big black eye brows and dark curly hair growing in. I look at the old pictures of him with his tousled blond hair and I can’t imagine it’s the same child.
On Thursday, we went to clinic and Robert received IVIG. They also took a lot of blood for the latest engraftment study. I think Robert is becoming a research project. They had taken blood the Wednesday before (a lot) but I got the distinct impression it didn’t get to the lab quick enough.
I do think the enzyme is helping Robert, Mark thinks I am too optimistic. He does seem to be hearing better, walking better (not running into walls as much) and understanding conversations better.
Dressing changes remain the hardest thing we go through. It takes three of us, one to remove the tackiderm and the other two to hold Robert down. Last time we did it around 9:00 p.m. and Robert screamed through the patch removal. His big brother, Nick cried in bed through the whole process. There has to be an easier way to do it. Bailey’s dad had some suggestions we will try. Anyone else with ideas, we are listening.
The rest of the family is adjusting. Matt keeps talking about an imaginary friend, named John who got weird and died. The medicines didn’t work for him. He worries that I will take Robert’s platelets out of his central line. Including him and explaining things to him seems to help. I am not looking forward to flu shots.
Mark and I are both trying to loose the weight we put on while at the hospital. So far I have lost 2 pounds and Mark has lost 17. We get pretty crabby when we are dieting.
Ping (JoJo’s mom) seems be trying to get on with life. They went to our beach house last weekend and I think that helped. Hopefully they will go again in November.
Robert received a really nice card from one of the resident doctors, Tracy McMahan. I know how little time Tracy has and it was so nice of her to send it. Tracy, we miss you (and Nancy, Cara, Lisa, Jeff, Kelly, Beth, Jackie, Melodie, Dr. Horn, Mary, Sally, Kali, Teri, Derrick, Michelle, Winnie, Cynthia, Erin, Denise, Bart, David, Twinkle, Havilyn, Mary, Carol, Marrisa, Maureen, George, Christi and Gillian; if we forgot anyone, sorry).
