Robert’s Road to Recovery Journal
Presented by the International Society for Mannosidosis & Related Diseases.
Kathleen’s Diary: September 7, 2001
Robert’s Update BMT + 50
There was some very, very good news today. I got the idea from Jenny’s Journal to ask Dr. Horn to have Robert’s mannosidosis enzyme levels checked. The results from this test would be one more marker to tell us if Robert’s BMT had been successful. After all this was the main reason to do the BMT in the first place. Robert results were that his enzyme level was normal. This makes him equivalent to Nick and gives him twice the enzyme level of Marie, Allyssa and Matt. This does not quarantine he will continue to make the enzyme but it means he is producing it right now. Only time will tell if he continues to make this critical enzyme himself.
The first day home is very strange. Robert couldn’t have been happier. He loved it. He is not walking yet. Robert’s calves are extremely tight. Parris’ parents, Brian and Brenda were very smart, they kept Parris in high top shoes the whole time he was in the hospital to keep his tendons lengthened. I wish the physical therapists at UCSF had talked to us about how important it is to keep some muscle tone.
The medicine regime is a little overwhelming at first. Even with a list, there is a lot to figure out. And the list does not include anything but medication. I totally forgot to hepronize Robert’s lines until about 7:00 p.m. and fortunately Lillian was here to help me.
JoJo, Bailey and Parris all seem to have good days. Bailey even felt like playing a little today and Parris is going on a trip to see his grandparents. Katelynd was heading home for the weekend before surgery next week to get her ready for her prosthesis. Katelynd plays the trumpet and I hope she will play it for us soon.
Some prayers are needed for all of those above. Can I ask everyone to add one more person? A very good friend of mine, Scott Fuller (he is putting his heart and soul into the new children’s hospital) has a sister, Christian, who just went through two major surgeries and this weekend is very critical to her health. I am not sure I have spelled Scott’s sister’s name correctly but I don’t think God will mind. After all it is obvious he has been listening to us all a lot lately.
We may not continue to send out as frequent an update going forward, only if something noteworthy is happening to Robert or his friends.
If someone on the BMT floor could get Barry’s e-mail. I didn’t get a chance before I left. His son is in Michael’s old room. Barry looked like he could use a friend.
And Cara, I am glad to see you are looking at the website, I will add you to the distribution. If anyone ever says a negative thing about a nurse, I will punch him or her in the nose. Nurses must go to heaven quicker than anyone else. Cara was Robert’s favorite nurse. If I can ever figure out how to scan a picture I have a picture of Cara giving Robert his donors bone marrow.
And as Mark said if anyone is feeling sorry for themselves, just take a trip up to UCSF Floor 7 and your attitude will change quickly. We all have so much to be thankful for.
