Robert’s Road to Recovery Journal
Presented by the International Society for Mannosidosis & Related Diseases.
Kathleen’s Diary: September 27, 2001
Robert’s Update BMT + 69
Not much to report on Robert right now except he is still very happy to be home with us even though it seems like everytime he looks at us we are shoving a medication into his mouth. I am doing much better with giving the right dosage at the right time with Mark’s new dosage and time form and as long as no child asks me more than two questions while I am drawing up the medications. It seems as if everyone in the house saves every tough question until they see me trying to carefully and accurately draw up medications.
Please don’ t tell Scott, Robert’s physical therapist that Robert is doing well walking or we may never get back into his busy schedule. It is dificult for Scott to try to fit in coming to the house. We keep Robert in the house as much as possible. Monday Robert’s platelets were 23k and we didnt want him falling and using anymore than he has to.
The latest engraftment study shows about the same amount of donor cells in Robert’s perepheral blood, about 93%. This is a good sign. The Tcells are still mostly Robert’s and this will just take time to see what happens. He is making his own enzyme and we like to think he might be hearing better, standing straighter, and talking clearer but it might be more wishful thinking than anything right now.
I think Robert’s twin, Matt has been very upset about JoJo and has been talking about death alot. Monday night we had a big lightening and thunder storm here which is pretty uncommon. The next morning it was bright and clear and the clouds were gone. Matt said the clouds were gone and that they had died.
He also seems very concerned about anything we do with Robert. Anyone have any suggestions on how to treat a five year old in a situation like this?
Tonight we had to do a dressing change. Robert gets very upset. He first cries “Mom”, “Mom”, then “Dad” “Dad and then “Matthew”, “Mathew”. It could just break your heart. But once we are finished we are completely forgiven and loved again. He is just such a wonderful kid!
