JIA- Part 2

Early June

I know mobility is important. We spent a long time helping Cooper learn to walk. Watching him limp and struggle to walk physically pains me, as well as him. I see him fall behind his little brother, no longer able to keep up. One day, Cooper tries to step up onto a curb and falls. He falls down the stairs because he will not/cannot bend his knee. He won't get out of bed in the mornings. He just sits there and waits for me. I am angry. I am frustrated. I cry many tears of worry, anger, and frustration. I want to know what on earth is going on. I try a chiropractor, two different ones. I try physical therapy, the options for which are very limited in our rural area. I borrow a red light from a friend who says it may help with pain in the joint. We do magnesium baths and massage every night. At naptime and bedtime, I lay next to his bed and manipulate the knee joint while he's asleep. Nothing seems to help. The ibuprofen certainly did not. So I make that appointment with our regular pediatrician to see if he has any other thoughts on what it could be.

In the meantime, I also take Cooper to Shriner's Hospital, a children's specialty hospital. It's over three hours from home, one way. They take more x-rays, but don't have many more ideas. The doctor thinks it could be that Cooper dislocated his knee at some point, and know he's guarding it. He has us go over to orthotics to order a custom knee brace for him. I ask him if we should seek an MRI. He says it's a big procedure because it has to be sedated, and the wait is 6-8 weeks. I can't watch Cooper struggle for that much longer. He thinks we should see if the knee brace helps first. Again, what can I do but agree?

Mid June

The problem begins to feel very urgent. Cooper does not walk normally at all. He will allow someone to bend it, but only occasionally and with great effort. I know this is not good for his joint, or his muscles, or his entire body. We see the pediatrician. He is stumped, just like everyone else. He orders bloodwork again, to be sure we didn't miss anything. He orders an "autoimmune panel," which I guess checks for inflammatory markers or other unseen issues. We wait for the bloodwork and continue trying to push him through PT. The blood work comes back, and the pediatrician tells me that everything looks fine. I'm relieved, but also really want answers.

Weeks pass. Every day feels like an eternity. The last week of June, I take Cooper to see David at the physical therapy office I love. It's 2.5 hours from home. Cooper absolutely will not participate. He screams, he protests with, "Owie, owie, owie," as they try to manipulate his knee. No one is sure what is going on, and I am out of things to try.

Appointment # idontknow

As a last ditch effort to find an answer, I make an appointment with an orthopedic doctor. I've lost count of how many times we've been up north to the city now. I begin to question why we had been led and prompted to move just eight months earlier. Certainly, if this would have happened a year before, we would never have moved.

The orthopedic doctor looks through the long list of possible issues that I'd gathered to this point, none of which have panned out. He agrees to order the MRI. As much as I don't want to put Cooper through the sedation and procedure, we need an answer.

Early July- the MRI

James and I travel up north for the MRI. Cooper can't eat anything in the morning and can't drink after 8am. I try to get as much fluid in him as I can. Our family is able to watch our other two kids, thankfully. We'd never done this before. It's nerve wracking. I ask the pre-op lady a million questions. Are there side effects with this procedure, with the contrast dye? What exactly will we see in the results? Is someone monitoring his oxygen and airway? Kids with Down syndrome have floppy airways. His oxygen could be compromised easily in a sedated state. He's never been sedated, so I'm nervous about that. They answer patiently, and we wait even more patiently. Finally, they're ready.

They let us go back with him, and I hold his hand and talk with him as they put the mask on his face, the light sedation stuff before the heavy stuff. He plays with the light up, spinny toy- his favorite. The toy we only ever see when we're in a hospital or therapy setting. Does he notice that correlation between the toy and the setting yet? I see Cooper's eyes get droopy, he looks at me, the person he trusts, as they guide his body to lay on his back and his eyes close. James is standing behind me, hands on my shoulders. My eyes sting. My throat is tight. I don't care if anyone here sees me cry, but I don't want Cooper to see me cry. He fades away, and they tell us they'll take good care of him and escort us away.

I hate this so much.

Post MRI