Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: June 20, 2002

BMT + 79: Homebound!

I wish everyone could enjoy life as Robert does and we are so lucky to be able to enjoy his pleasure in everything. He seems happy to get up in the morning, to play ball with his brother, to watch “Tower Rainer” on Video (that’s his way of saying Power Rangers) and yell at his dad; “Dad, Dad, Dad and then a louder Dad”.

It is so much fun to watch Robert trying to walk; he walks like a one year old with his arms outstretched and his sense of balance off. We all clapped after he walks a few steps. Robert likes us to then stand around and watch Matt walk the same distance.

Yesterday, Robert ate two eggs for breakfast and this morning he drank two glasses of milk. He is pretty amazing! After ten medications before breakfast, we are so thankful that he has a fundoplycation (the surgery that tightened the area around his stomach). He can’t seem to throw up his medications (I have wondered if each child should have a fundoplycation before they have a bone marrow transplant).

Today is Matt and Robert’s sixth birthday. Matt wanted to know why his friends were not coming for his birthday today. He does not understand how this can be his birthday if his friends are celebrating with him on Sunday. He said he is not six yet and won’t be until his friends are there for his birthday. Robert just wants to sing “Happy Birthday” over and over again. The boys did get some very fun toys, books and tapes from Ann Pierce and the foundation. They really enjoyed the gifts, the game from Michelle and the balloons from Cheryl Brown.

Counts