Robert’s Road to Recovery Journal
Presented by the International Society for Mannosidosis & Related Diseases.
Kathleen’s Diary: September 1, 2001
Robert’s Update BMT + 44
Sort of a quiet day around here. It was hard to get labs due to it being a holiday weekend. Other hospitals send their patients here and the lab gets overloaded. Actually, we haven’t got the lab print out yet but verbally we did get bad news. Robert’s WBC is 1.2, way down from Robert’s high of 2.6 yesterday and his Neuts were down from 1.86 to.7. Dr. Horn had stopped the GCSF (the growth stimulant) about 48 hours ago and she believes this maybe why his counts are down so much. But it is worrisome, especially when he doesn’t look as good today. He looks tired and puffy although he seems better since he had a late nap. He won’t eat his pizza but he is eating Skittles, which I don’t think are that much less nutritional than the pizza. He may be tired because he sat up and stood some yesterday for Uncle Dan.
Speaking of Uncle Dan, we would be having a tough time getting through this without all the extra help we are getting. Uncle Dan and G’ma have spent many afternoons up here to make sure we get out in the sun little. Also, this weekend Aunt Judy and Aunt Margie are making sure someone is with the other kids. The other kids are enjoying spending the night with their cousins, going to soccer games (getting Randi Chastain’s autograph) and watching Nick’s football game.
We did find out who is a carrier in the family. The good news is that Matt has been ruled out as having the syndrome. He and Allyssa are very likely to be carriers, Maria is possibly a carrier and Nick is not likely to be a carrier. I teased Mark about all four of his children being carriers or having the syndrome while two out of three of mine have it or carry it but then I remembered I could have been the one that passed it to Matt and not necessarily Mark.
Guess who is now eating his pizza? It might be because I found the exact Barney he wanted to watch. Robert still has about ten hairs per square inch on his head that have continued to grow. He has that kind of mad scientist look right now.
We have been sending e-mails to many of the parents whose children have been through a BMT to answer questions that are important to Dr. Horn and us. Everyone has been very responsive and we greatly appreciate it. I feel there are a lot lessons to learn from other experiences. Please continue to help. Someday when Robert is president of United States he will invite each of you to stay in the Lincoln room at the White House.
Jackie, the nurse, and Cynthia the aid both came to say good-bye because its end of shift. I think it is time for me to say good-bye also.
P.S. JoJo has been holding his own which is considered good news. He is still using the most important words for kids, no and why. Ping has been getting a lot more support and visitors. Her church group said they had no idea how bad things were. Bailey isn’t doing too well. He was moved to ICU so that they could do a scope of his lungs but his potassium was too high today to do it. His respiration rate was 55-60. This is pretty high for a little guy to try to maintain. Please step up the prayer rate for Bailey. He is quite a fighter but he could use some help.
