This week started off with a postponed clinical trial trip to Florida. Wyatt has been in this trial for over a year and honestly I don't think it is doing much for him. I go into these trials knowing that most meds Wyatt will have to take will take a long time to show improvement so I try not to judge the effectiveness for a while. Well lately I have seen him decline a good bit and it's hard not to say the drug isn't working. Patrick and I talked about this at our anniversary dinner on Friday night. I could feel myself get choked up while we talked about how much harder everything is getting for him and how little options we have for treatment. With Wyatt's age and ambulatory status it puts him in the group of what trial people call "the gap kids". While at the trial visit I talked to the clinicians about our thoughts on this drug and if they have any options coming to UF. They have known Wyatt for almost 5 years and they said they are always thinking about what could help him. As of now we are still in the wait and see mode but we are hopeful with even more people who are looking out for Wyatt there will be something for him...but for now we continue the course and hope for the best.
So now a days the wheelchair is our daily companion. When at home and school it is the electric one and while traveling it is the manual. Til just recently Wyatt never really asked to use it when just "running into the store" but now he asks for it every time. I know I should be happy that he is asking and accepting the changes but it sure is hard for this momma. I find myself asking him, "do you need me to get out the chair or can you walk?" Then I beat myself up about it, why the heck did I just ask him that. I know the answer but for some reason I can't stop myself from asking and then feeling terrible for it. I guess I am having a harder time accepting our new companion. I apologize to him and he says mom "don't feel bad it didn't hurt my feelings." It amazes me how well he has been handling these changes.
When we got to the hotel after his trial visit and visiting the park Wyatt was really exhausted. He wanted to take a shower and then rest for a while before dinner. When he walked out of the shower he said, "mom do I walk funny?" I looked at him and said "you walk like you and I love you so much." I explained how his body has to compensate to keep him from falling and he said sometimes I think it just looks weird and sometimes my back needs to be stretched but I'm happy I can still walk. We hugged each other took a much needed rest. I would just look at him and smile every once in a while, my heart breaking a bit and growing in love at the same time.
I can't believe the boy who made me a mom is 15 and has to go through so much. Right now there is not much else I can do to keep him on his feet. So we will embrace the chair and be happy he has an electric one to use so he can have his freedom and save his dwindling energy for fun things like throwing the baseball with his brother.
It's November, the month of being Thankful...today I am thankful for my family, for the wheelchair, and for the scientists who are trying to find a treatment for DMD. What are you thankful for?
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