Have you noticed that we have been a bit quiet over here? Like everyone else quarantine and social distancing has had its impact on our lives. At first Erik was home from work and not working, so it was like we were on vacation, but at home. We had a great time watching movies and playing games and doing projects around the house. Then Erik started working from home and we started school back up and created a little bit of normalcy. Kind of.
Except there is something else we have been going through as a family. We don’t usually share much of our personal lives. Not to hide anything, just for privacy sake. But this feels like something we should share.
The beginning of our journey
Back in March of 2019 our youngest boy (Jonathan), who was four at the time, started limping and experiencing some pain in his lower back/bum area. The limping impeded his ability to run and climb like he wanted. It came out of no where and went away just as quickly. The limping lasted for about two weeks and by the time we got to the doctor his pain was in his ankle. So they x-rayed his feet, saw nothing and told us it was probably just growing pains. Over the course of the year he had multiple bouts of pain and limping, each getting worse and lasting longer. Multiple trips to the doctor and x-rays and no answers. I knew this was not normal and I wanted answers. It was so hard to see my once active little boy struggle just to walk. He couldn’t keep up with his brothers, riding in the car for road trips was painful, long hikes were out of the question, even kayaking was challenging and we would have to shift him around the boat to keep him comfortable. Don’t get me wrong, I would change our whole lives to help him. These are things he loves to do and seeing him not be able to enjoy himself was heart wrenching.
The final straw came when we were on vacation back in December. We were walking around Columbia (California) and Jonny collapsed in pain. This was the night before he turned 5. We had to drive to the next town over to pick up some pain medicine, luckily it helped. But I was done with waiting for this to work itself out. We went to the pediatrician, had hip x-rays done, and blood work done to check for cancer and some other things. Let me tell you, wanting to see if your kid had cancer is one of the hardest moments we have had to endure. The blood work came back negative and showing no definitive answers. We then saw a couple other doctors, an orthopedist and a neurologist. The neurologist ordered some more blood work. This blood work came back showing us that there was some inflammation in his body and that he may have a connective tissue disorder. We lost more sleep and cried more tears from the list of things he might have…all of them were scary, life shortening things. But during this time he was still having pain and limping episodes so we pressed on for answers. Oh, and remember this is all happening during a pandemic too!! Talk about stress!
Finally, we were referred to Lucile Packard Stanford Children’s hospital. We are so grateful that this world renowned hospital is within driving distance for us and I knew they would help us find some answers. We met with a rheumatologist she felt some inflammation in Jonny’s hips so she ordered an MRI. Now an MRI for a five year old is not a simple process, it required anesthesia to keep him still and calm. But I knew this was necessary to find out what was going on in Jonny’s little body. While he was having his MRI they also did some more blood work to test for some specific inflammation and genetic markers for arthritis.
Getting some answers
We met with his doctors a couple weeks ago and finally got our answers. Jonny was diagnosed with juvenile idiopathic arthritis or JIA, specifically sacroiliitis. We also learned from the blood work that he has the genetic marker that predisposes him to this type of arthritis. While this is not the outcome I wanted, I am glad to know what Jonny has and now we know how to treat it. How we treat it is a bummer, it takes an injectable medication to reduce the immune response in his body that is causing damage and pain. This is a disease that he will have for the rest of his life. It may go into remission at some point, I hope sooner rather than later. But he may have to take this medicine for the rest of his life and we have to watch for a few other things that can accompany this disease.
To be honest this diagnosis has hit me like a ton of bricks. No one thinks there five year old is going to have arthritis. I want him to run and play and live a long, healthy and active life. Not that his life will be shortened but it seems like all of that is up in the air now. And I know that those thoughts aren’t helpful and that I’m getting way ahead of myself. But uh, sometimes life is hard and sucky. It has helped that I have been neck deep in talking with doctors and appointments and blood draws and pharmacies and nurses and planning and scheduling and All. The. Things.
So, this is why we have been a bit silent on our Instagram and on here. It’s hard to be apart of this outdoor community when you can’t get out and go…because you have a sick child. It is painful to open my Instagram to see all the cool places everyone is going and we are making regular trips to a children’s hospital. It seems like a silly thing to whine about but it’s one of the challenges. Now with Jonny’s new medication we will have to be really careful about who we are around and where we go…especially because we are in the middle of a pandemic. So, we aren’t going to be traveling anywhere or doing any big hikes and going around any groups of people at all. So no weekend beach trips for us. This is just where we are at in life right now. I know our Instagram can make our life look like it’s business as usual around here. But right now, it’s anything but normal. We are really going through it and trying to adjust to a new normal…on top of a new pandemic normal.
Ending with some positivity
I want to end on a positive note…because that’s how I like to live life. Jonny’s prognosis is good. We caught this early before hardly any damage was done…nothing the body can’t heal from anyway. We have amazing doctors and everyone at Stanford has been so great with Jonny. Also, Jonny is currently doing well in the pain and inflammation department. A couple of times this summer we have gone tide pooling where he gets to scamper over rocks and he has loved it! We are finding ways to still get out and stay distant and accommodate Jonny’s needs. The medical bills have helped us to focus on what’s important financially and enjoy what we already have. A diagnosis can really wake you up, we are feeling motivated to live the crap out of our life while we can. No matter what the future holds we can make the best out of today and enjoy the life we have right now.
If you have any questions we are happy to answer them. If you and anyone you know has JIA we would love to connect. Thanks for reading!