Robert’s Road to Recovery Journal
Presented by the International Society for Mannosidosis & Related Diseases.
Kathleen’s Diary: April 4, 2002
BMT + 2
Today was a quiet day for Robert. He slept very well because Cara was watching over him all through the night. She made sure he was propped up because he breaths better if he is slightly upright. Robert really didn’t want to get up much this morning until I went into the bathroom and pulled out a new toy. We must have the only bathtub in town that doubles as a toy box. Robert has even got into the habit of pointing at the bathroom door and saying, “Mom, toy!” What will we do when we get home and there are four bathrooms in the house; will he expects toys in each bathroom at home? Anyway, the new race car toy kept Robert busy for eight hours.
His other favorite nurse, Mary, was working today and it sure makes life easier on everyone. Especially since we had to do a dressing change, it was nice to have Mary do half and I did half. Mom was with Robert this afternoon and while I went home to see the other kids and to stock up on more new toys. Mary had to give Robert his evening medicines. Mom said it took Mary and three other nurses clapping and giving him high fives in order to get him to take his medicines. He sure reminds me of his dad, no dummy when it comes to finding the way to a female’s heart. There is nothing like a puckered up lip kiss from Robert. The mannosidosis syndrome tends to give the kids thicker than normal lips, the kind all female movie stars want to have. Robert can pucker his up and really get you with his lips. I have tried to teach him not to kiss on the lips.
Dr. Horn told me today that she saw Robert’s pulmonary test results and the report said his “lungs were normal”. Normal is such a beautiful, perfect, special word and a word I thought I would never hear when someone referred to Robert’s lungs. It was a treat to tell Mark that Dr. Horn said this. I just wish I could see Dr. Lee’s face when she reads this. She is Robert’s pediatrician and she probably will be just as pleased as Mark and I are.
Robert’s godfather, Uncle Tom, sent Robert a Veggie Tale video and Robert has been enjoying it for the last two days. Tom, next time could you get one without singing tomatoes; you know I hate tomatoes.
Mary was telling me how they miss the group of parents that were in the BMT unit last July. She said it was nice to see how well we all bonded together. I believe we will be friends for life.
