Hello everyone!
It has been a long time since my last update. This means good news. Trey continues to do well. There are little blips that come up in terms of concerns and worries, but nothing major. However, I know it is time to update when people start asking how Trey is doing and asking if we are still researching and if they can donate. So, here is an update of Trey’s and our MPS world since last December.
Regarding medical updates, there was again some concern regarding Trey’s spine and there is now yearly conversation regarding progression in this area. His spine has been compared to the Leaning Tower of Pisa. There are two areas, one in his cervical spine and one in his lumbar spine, of concern. Alone, neither is very severe; however together, they are quite dangerous. As long as they are stable, Trey is okay. If either progresses, it becomes urgent very quickly. Right now, we see Trey’s orthopaedic surgeon every six months. Trey saw orthopaedics in August, so for 6 months, Trey has been given the green light.
Trey had some minor concerns regarding his ears. He had an ear infection and a skin infection that went fairly deep (a black head that finally came out after more than 5 years – the effect of hearing aids) and got worse with his hearing aids (covering a sore so that Trey can hear didn’t work so well). It is mostly healed now, but we still have to keep a close eye on it.
This next topic is sensitive and I contemplated not writing about it because I do not want to be judged for it. However, I speak in honor of me making the best possible decision I could in the context of our family, and in solidarity with all parents who have made this incredibly difficult decision.
Last August when we moved home from Los Angeles, it became very clear our household was not managing with the degree of care in it. Trey requires one-to-one support. Without it, he and his siblings are not safe, and with it, his siblings are neglected completely. Trey adores his younger sisters and the only way he knows to engage with them is by bugging them. Bugging them looks like hitting them on the head or smacking their bums, almost constantly. As they have gotten older and learned to retaliate, it became unsafe and exhausting for me on multiple levels. Trey’s teacher, who sees Trey as I see him and whom I adore (she talks about him with the love of a mother and will call me on the weekend when she sees a toothbrush she thinks would be great for Trey due to his ROM limitations, for example), said I should get on finding Trey care ASAP.
It is a long long story that involved Monday to Friday advocacy (about 20 hours per week) from me over seven-months, but due to Trey aging out of the Ministry for Children and Family Development and aging into the adult world, if I did not get Trey into care before he became an adult, I was told by multiple sources (parents, doctors, government folks, and advocacy groups to name a few) that it would be decades before I could get him into care, and I may pass before it became a reality. After a lot of fire breathing, Trey moved into care in March. The manager of the house Trey lives in has been wonderful and I had much support moving through this process. Trey moving out has been both relieving and stressful.
Moving from brushing and flossing Trey’s teeth twice a day since he was a baby, showering him, and looking after all daily his needs to not doing it over night, was a shock. It has left significant amounts of time for my other children, which has been incredible. I don’t feel like I really got to know Raleigh and Cora until Trey moved out (there is other context involved as well). I have also been able to slow and calm down. I didn’t know what it was like to walk kids to school without running to Trey and back to other kids, wondering where one kid disappeared to because I can’t be in two places at once, and constantly yelling because I can’t be in two places at once. Mornings and walking to school can be stress free- I had NO idea. It also means that Trey can try C-Pap again because he has night care at his home, which after 9-months of me trying, I had to give up on because I could not give more than two-hours per night to the effort.
On the other hand, I miss Trey like crazy, I feel guilt, and balls that would not have been dropped had I been looking after him, have been dropped. I have been angry and scared at what will happen to Trey if I die because I still see him regularly and notice things that are going on for him, both physically and emotionally, that others do not, simply because they are not his mom.
Trey also graduated in June. Any child with a progressive disease who graduates is a big deal. I ping ponged between: it was a very real possibility that Trey would not have lived to graduate so us even getting to this stage is the most beautiful and incredible and magical experience EVER, to: most of the grads were there with dates and moving on to work, travel or school. Then back to: Trey was at his convocation and dinner with friends who adore him and one girl who might be in love with him. Back to: Trey is going into a day program- will he be fulfilled?
Trey began a day program after school completed and he seems to be enjoying it. He also really likes the men he lives with. He has constant company and engagement with people who like him, support him, and want to spend time with him. Trey’s Special Olympics activities have begun again for the year and when I picked him up for swimming this morning, two of the men came to say hello to me and goodbye to him. Trey has people, which makes my heart full.
This has been long, so I think I will stop here. I will end by mentioning that we ARE still fundraising and funding research. We currently have enough money raised to fund another grant and the MPS II Fund board is in conversation regarding that. We are also talking about in person fundraising events over the next year. If you would like to donate to MPS II research, go to https://www.theisaacfoundation.com/, click on “Donate Now” and choose the MPS II option from the drop down menu.
With love and gratitude if you made it through this long message and for your continued support.
Deb