Robert’s Road to Recovery Journal
Presented by the International Society for Mannosidosis & Related Diseases.
Kathleen’s Diary: April 12, 2002
BMT + 10
Robert has been uncomfortable today. Because Robert has the mentality of a two and half year old and seems to have a high tolerance for pain, he does not complain much. We watch his blood pressure, his respiratory rate, and his temperature and if any are high we have to decide whether it is due to pain. If we think it is pain related we ask for a higher dose of pain medication for him. Robert has had a nosebleed and this can be concerning because his red blood level and platelets are both low. His bilirubin (effects kidneys) has been high but it fell from 17 to 1.3. I remember last time we were in the hospital, Bailey next door to us, always had a high bilirubin.
Now to the highlights of the day; what a wonderful group of family and friends. Our friends become more like family and our family has always been our best friends. I understand there has been a run on old burger king toys similar to the run on high tech stocks two years ago. Everyone has been searching through thrift shops, toy boxes and toy stores. Donna, Jeannine, and Judy win the prize. Donna had her children’s school announce the need for Robert’s toy over the loud speaker. Our cousin Jeannine found one within her kid’s toys and gave it to Donna who rushed it up to UCSF today. Robert was thrilled.
My sister-in-law, Michelle said that if Will Smith is causing me this much trouble, imagine how much trouble he is causing his wife.
Not to be outdone; Judy was on a conference call at home and decided to look through a toy drawer at home and found a Will Smith. Judy drove 200 miles the next day to deliver him to me. I asked Judy to put Will in the car the night before because sometimes Judy does forget her wallet and I didn’t want this valuable toy in her purse. Judy rarely leaves her car behind. Judy did not want to put Will Smith in the car; instead the next day she drove with him in her hand all day.
I also appreciate that no one bid higher than me on Ebay. I would have been disappointed if anyone outbid me or caused a bidding war.
The other good news was that Brian Bender suggested we ask for their old room when Melissa went home. Brian said it was twice the size of our room and had a bed. Robert and Mark moved yesterday with Brian’s help.
And the other good news is Brandi Chastain has joined the board of directors to the Silicon Valley Children’s Hospital Foundation and she sat at a CyberRays lunch with Judy and I today. So, what happens now is I will cry if you all don’t start going to CyberRays soccer games to cheer them on (I figure crying was so effective last time that I might try it again).
