|
Matthew's Page 
Welcome. Matthew was diagnosed with Hurler's Syndrome in March 2003. He underwent a cord blood stem cell transplant that May at Duke University Hospital and was discharged in July 2003.
Matthew has an older sister, Victoria, and fraternal twin brother, Sean.
We love reading the guestbook entries and e-mails, and appreciate your thoughts and prayers more than anything. Keep smiling!
Journal
Thursday, November 3, 2005 3:23 PM CST Hi everyone. Sorry that we haven't posted anything in a long time. I'll try to catch everyone up.
Matthew had his two-year post-transplant anniversary on May 23rd, and we had our scheduled visit to Duke at the same time. Everything went well during our check up with Dr. Kurtzberg. They think he is progressing well, and most of the restrictions he had because of his suppressed immune system have been lifted.
Matthew has a weak eye, so we are back at Johns Hopkins for treatment. When we went to the eye clinic in June to see a recommended doctor, I saw the eye doctor that helped diagnose Matthew two years ago. So I ran over to thank her for what she had done for Matthew. She remembered us and wanted him under her care. She could not get over how "normal" Matthew looked.
The doctor has us patching his good eye six hours a day for six months and he gets a drop in the good eye to blur it when he isn't wearing the patch. He will eventually need surgery, but she is trying to correct as much as possible first. She does not feel the glasses we had for him were the right answer.
Matthew had two surgeries over the summer. His dentist had to remove an infected tooth that was caused by trauma, and while he was in the O.R. an ENT surgeon removed his ear tubes. We were scheduled for evening surgery, but at the last minute it was changed to earlier in the day. It turns out that the head of anesthesiology at the hospital is a Hurler carrier, and he had a brother who died at age 10 from Hurlers. So he was familiar with the smaller airway and other potential complications. He wanted surgery moved up so that the O.R. was fully staffed. It is very nice to have people looking out for Matthew.
We continue to take Matthew to Children's Hospital in Washington to see his neurosurgeon. All is going well with his head and shunt.
In June we had one big birthday celebration. Sean and Matthew turned three and Tori turned five. We have some pictures on the photo album site under June/July 2005.
Matthew started school in September as part of his therapy program. He goes for half a day and sees therapists during that time, in addition to other schoolwork. Matthew is two months into his new routine and he is doing great. In the beginning it was very tough dropping him off and listening to him cry when I walked away. He has fallen in love with his teachers and therapists, so he looks forward to going to school now.
In October he had his first field trip to a pumpkin patch and farm, and his brother had a chance to join in. They both had a lot of fun.
This week we started a weaning schedule for Matthew's last medicine (hydrocortisone). He was tested a couple of weeks ago, and his body is now making it on his own. If all goes well, Matthew will be off all medication by the beginning of January. How wonderful!
--Peggy
Read Journal History
Hospital Information: Patient Room: Home!
Links:
http://cancer.duke.edu/PBMT/ Duke's Transplant Site
http://www.mpssociety.org/ Information on MPS Diseases
|
|
