It’s been ages since I last updated on Trey. Fortunately, this is because there’s little to update, at least in the world of Trey combined with MPS II. I read back through my blogs- the last Trey update I gave was in April 2018!
Trey has been receiving IV Elaprase since February 2006 and IT Elaprase since October 2011. We have been waiting for two years to receive news about the approval of IT Elaprase, but there are no answers yet. This is a very loaded question/topic/conversation. While we wait, Trey and our family are good. Trey is receiving drug and has a great quality of life. While we wait, other families who are waiting for drug are not doing so well. Some boys have passed, others have progressed to a stage of disease where the drug is unlikely to help. I remember being on the waiting end of things before IV Elaprase was approved. Trey was diagnosed with MPS II in February 2006 and the drug wasn’t approved by the FDA until July 2006. That was only a 5-month wait and it was hell. Every day you wait while you know irreparable damage is being done to your child; a baby you birthed and love and have huge hopes and dreams for is getting brain damaged and losing hearing and experiencing progressive heart disease and joint contractures while you gaze into their beautiful eyes. I used to stare at Trey, after diagnosis and pre-IV Elaprase, and wonder exactly what damage was being done RIGHT NOW. Every day you are angry. Every day you are sad. Every day you are scared. Every day you are in trauma. Every day is HARD.
Once we have an answer about the IT trial, things for us will either be good for us, and things will truck along like they have been ever since Trey got IT drug, or they will be very very bad. It’s like this: IT drug= trucking along. No IT drug=progression and death. IT drug= being different from others in that Trey has special needs, but being stable so that we know what to expect and can get on with living our lives with Trey as a part of our family, instead of a child who requires so much physical care that the other members of the family get neglected (including ourselves), and so much emotional work to figure out how to be remotely sane while watching your child lose skills and abilities, it often leads to exhaustion and insanity. When I first heard we would receive news “soon” about IT approval- two years ago- I operated with some degree of panic. I feel the panic rising while I write this. However, I have gotten used to waiting, so when it’s not actively on my mind, I’m able to get busy living.
In April 2018 I wrote about Trey’s obstructive sleep apnea (OSA) and limp. After trying for about 8-months to get Trey to wear a C-Pap machine progressively longer each night, I gave up. If at some point I get the energy back up to try again, I will. It’s the only treatment for OSA, so I felt like a horrible mother for giving up, but I just couldn’t do it anymore. I tried so hard, I was so exhausted, I was doing it on my own 7-nights/week, and I just didn’t see how Trey could get from where he was (tolerating it while lying in bed for up to 20-minutes in the dark, followed by a reward of watching movies while wearing it for progressively less time each night) to where he needed to be (sleeping with it all night- he didn’t even sleep with it once). It didn’t help that research shows boys with developmental disabilities are the hardest population to get to wear a C-Pap machine. Unfortunately, OSA can cause heart issues if it’s bad enough (it’s not in Trey yet) and daytime exhaustion, which would impact Trey’s quality of life, which both suck. L
I also wrote in April 2018 about Trey’s limp. It’s still a mystery. Trey’s had multiple x-rays, MRI’s, orthopaedic appointments, hip specialist appointments, all to no avail. He still limps periodically, and for that reason we don’t really take him to basketball anymore. Aside from basketball, he still gets to do everything he likes to do. Speaking of which, he’s in all sorts of activities. At school, Trey lifts weights, is in swimming lessons, does recycling and shopping for the school and is doing work experience at Maplewood Farm. After school Trey has his weekly infusion, dinner club where a group of teens go shopping for, prepare, eat, work on social skills, and clean up from a meal, with support. He also goes to forest club where they learn about the forest and survival skills! On Saturday’s Trey goes to Teen Club where he hangs out with friends from different high schools and they do all sorts of activities and go on all sorts of trips. Trey has a busy life and he LOVES it!
That’s about it in Trey’s world! Except that… HE TURNS 16 IN MARCH 2020. I can’t quite believe this yet.
I know the holidays can be emotionally loaded for many of us. For those of us who have kids with progressive and rare diseases, the holidays can become even more loaded. My hope this holiday is that you can find at least a few moments of peace and beauty; where you can feel the brilliance of fresh air or good food or good company (even if there are people missing) or a sound or sight or memory that lights you up. Moments… I now aim for great moments… great days or weeks or years set the bar too high I now believe. Great moments seem achievable. 😉
PS. The two pictures are of me and my boys, Trey and Avery, and our five kids (in age order): Trey, Avery, Sadie, Raleigh and Cora.