Cooper has been in physical therapy since October 2019. We saw the same therapist for the first year and then started alternating between his land therapist and a new aquatic therapist. His land PT was with us from the very beginning. She pushed us to see a specialist when his hand tremors started to get worse and when we weren't seeing any improvements in the first few months. She helped me understand what he needed and what I could do at home to help him get stronger. She taught me so much.
When we switched to aquatic therapy we still saw his land PT every few months and she was always so blown away by his improvements. It was easy to see how much she enjoyed working with him. And we loved her. But it was starting to become clear that she didn't have access to the kinds of resources he will ultimately need. The rehab facility just didn't have much equipment for kids and it was obvious they weren't prepared to handle a child with a lifelong condition like Coop's.
You see, we're lifers. This boy and I. Once a week. Every week. Forever. There won't come a time when we're just happy with where he's at and decide we no longer want to see improvements. And even if there did, once he stops going to therapy he will almost certainly begin to lose at least some of what he's gained. Because no matter what kind of work we do at home, it doesn't amount to the quality of work and expertise that his therapists can provide.
I remember the first time I came to the realization that this isn't some amusement park ride we can get off at some point. SMA isn't something we can walk away from when we've had enough. It isn't something that we'll deal with for 15 or 20 years and then it will magically go away. We're lifers. I listened to a podcast the other day where a mother of a child with Duchenne Muscular Dystrophy said "Everybody else can walk away from Duchenne. But Duchenne parents, they can't walk away. I'm not gonna walk away. It's my life." That statement hit me like a ton of bricks. I hadn't even thought about it like that. Everybody else can walk away from SMA. But Cody and I, Maisey, and obviously Cooper, we can't. We're lifers.
Because of that and because of what SMA has done to my little guy's body, we're never not going to be at physical therapy. So I knew I needed to find a place that was geared more toward children. And offered more resources. We need a place that already has equipment for children who can't stand. We need a place whose therapists work only with children and are willing to learn about SMA and what it's done to Cooper and what abilities he might be able to gain back at some point. We need someone who will go the extra mile and research with me. We need someone who will fight tooth and nail to get us any and all equipment we might need to make his life even the slightest bit easier.
So I spent months researching pediatric physical therapy offices. You know there aren't any within a 30 minute drive from our house?! And trying to find one that offers aquatics wasn't happening. I finally emailed his pediatrician and asked her for a few that she recommends because I was so scared of switching his care over and then not trusting them like I trusted his original PT. The pediatrician called me a few days later (because she's amazing and always goes the extra mile for her patients) and told me about a few she thought would be best. I chose one, she sent a referral and within a week we had scheduled an evaluation at a new office. I was a little disappointed because when I looked into this office they didn't mention anything about aquatics. So I had basically given up on being able to do water therapy regularly.
On the day of his evaluation we met with a PT who basically just watched him play and did a few stretches with him. On his new patient paperwork I had to fill out a "goals" section. Obviously my big picture goal is for him to walk someday. I don't care if he has to use crutches or other walking aids. I just want him to be independently mobile at some point. She told us that based on where he is now, walking unassisted isn't likely. But she has hope that with therapy and a lot of hard work he might someday be able to walk with some sort of assistance. And that's all I want. As we were making a plan for his treatment she mentioned that they also offer aquatics. It's just at another facility. In Michigan.
I was hesitant to schedule anything in the pool because it would add another 15-20 minutes to our already 45 minute long drive. So I scheduled a land therapy appointment and told her I would keep the aquatics in mind if we ever wanted to try it out. But after his first land therapy appointment I realized he gets way more out of aquatics than he does land. He can just do more in the water.
So now we're traveling an hour one way to Michigan every Wednesday for a one hour aquatic therapy session. And as annoying as the drive is, and as tired as I am once we get back home from our three hour adventure, I am so incredibly thankful to have found this office and this therapist. I'm finally comfortable with what this facility and these people are able to offer. I know that our little man is going to stand on his own someday. I know that he's going to shatter every single one of our expectations and I know he's going to prove every single medical professional wrong.
But in the meantime, I'm going to continue to advocate for my baby and make sure he's receiving the absolute best care available. Because SMA isn't going anywhere and neither are we.
We're lifers.
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