JIA- The finale, maybe?

August 27- the ultrasound. 12 weeks since the limp began

As promised, the ultrasound takes only a few minutes. Cooper sits on my lap and plays a game while they scan his knees, both of them. I ask for them to look at both knees so we could compare. It's easy and inexpensive, thank goodness.

Almost immediately following the scan, the results are in his chart. I know the doctor will see them. Will she wonder how I got it done, after just telling me yesterday that it was not possible to have it done?

A message from the rheumatologist comes through, "It looks like there is no sign of active synovitis." That's all the doctor writes. No helping me understand what our next steps will be, no celebrating this small win with us, nothing.

I message back, asking her what we need to do to get ultrasound a part of Cooper's care. "If we're going to be patients of this office, I would love to get ultrasound in our toolbox. It's so much easier to evaluate his joints this way. What do we need to do to have ultrasound a regular part of his care? I am happy to reach out to the department head if I need to."

In more or less words, she tells me that ultrasound is not worth their time or effort to get trained in it. And what can I do? Keep pushing for it, when clearly they don't seem interested in spending time on it? Someday I will have that conversation with the department head, but it's not a fight I have energy to fight right now.

Thankfully, perhaps even miraculously, Cooper's limp seems to be slowly improving. The week after the ultrasound, Cooper tries running for the first time in months, and he's running freely with both knees bending. Something is helping. Something has taken the inflammation down and given his knee mobility back. I can't be sure what it is. Is this a miracle from God? For me, that is entirely possible.

In reviewing his stool testing with the functional medicine doctor, there is a small presence of salmonella detected, which is honestly shocking because he had no outward symptoms. I do my own research and find there are documented cases of salmonella infection causing "reactive arthritis." This inflammation almost always attacks the knees, and it can take 3-9 months to resolve. Cooper's case seems to match the profile of this type of infection and subsequent inflammation, but because I don't have evidence that he had salmonella before his limp/inflammation began, I can't prove that is what caused it. So, truthfully, I don't know for sure what caused it. Was it a salmonella infection? What is another type of infection? I had many moms tell me their child's arthritis began after an infection (some even told me after a vaccination). There is no way for me to know what caused it, and there is no way for me to know what has been helping it.

His functional doctor gets him on a supplement protocol that we're still on today. That will continue as long as we need it to, with careful testing and monitoring to make sure his levels are doing okay. That's what these functional doctors do, and I'm so grateful they exist.

One frustrating thing on this journey has been the way the traditional doctors don't seem to want to work with the functional doctors. Every time I brought up Cooper's care from a more natural angle, my words were either flat out ignored or dismissed as "not evidence based." Now, I understand why a doctor needs to make decisions for care based on research. It's best practice for many reasons. What I don't understand is why it can't be a part of the conversation at all, why I have to feel like I'm making poor decisions for my son's health. Don't the doctors know how long research takes? Something that could help my son isn't backed by research, but that's only because it takes years and years for the research to be completed and then published. It's doesn't make sense to me that traditional doctors won't give any time of day to functional medicine. I think if they would work together, they could do more good.

Today, we are about nine weeks out from the ultrasound that showed no signs of synovitis. Each week that passes with no limp feels like another week of victory. It feels as if I've picked up my son and have been desperately sprinting away from certain danger for months, to where I hope we end up further and further away from the inflammation for good. The mental work to try and help him is not an easy load to carry. The limp has improved so much, but his left thigh has lost a lot of strength. That's what 12 weeks of not bending it will do, I guess. It will take a long time to build it back up. To start him on that process, we put him in a week long intensive with David, the PT from our favorite physical therapy office in the city that we happened to run into the day after the limp began. And I am currently working with the school PT to ensure they're working with him there to help build his leg strength as much as possible. Of course, we do as much as possible at home, too.

I have no idea if the inflammation will come back, if it will hit other joints, if we will end up having to turn to the medications at some point in the future. I live in a place of gratitude, and of constant worry, not sprinting from danger anymore but definitely not stopping. I am running slower and checking over my shoulder every now and then. We will continue to try strengthening his knee. If you see us taking ages to go up or down stairs, that's why. I'm trying to get his knee and surrounding muscles working again. We will continue to work with the functional doctor at the Peirson Center and continue in prayer that we will be led to the ways to help Cooper feel his best.

Because at the end of the day, that's all I want. That's all any parent wants.

We want our kids to do well.

And they need to feel well to do well.

Just Cooper being a kid, something I thank God for constantly.