Monday, December 16, 2013

Going back to the start….

It’s been awhile since I’ve shared Monkey’s story and seeing how I have a lot of new readers I thought today would be a good day to go back to where it all began. I wrote this post on August 22, 2013. Hard to believe it’s been almost two years now since Monkey was diagnosed. We’ve come a long way since then.
Juvenile Arthritis…What it Means to Us.
Back in January we noticed that Monkey was limping a little. We thought that maybe it was because of how he usually sits on the floor…legs to the side like a M..we thought maybe his leg or foot was falling asleep. We started making him sit in his little chair and watched him carefully to make sure he sat with his feet out to see if it helped. Oddly the limping got worse. Soon he was complaining it hurt and would barely walk. We took him in to our pediatrician on January 24. He sent us right away for x-rays saying that often times kids his age can fracture their leg and not show any signs (bruising/swelling). After getting x-rays we were told they didn’t see any breaks or fracture of any kind. Once I got the confirmation back from the doctor he referred us to the pediatric orthopedist.

On February 2 we met with the orthopedist and they were using words like “rheumatoid arthritis” and “MRI”. This is when I started worrying. An MRI for a two-year-old meant sedation. The word rheumatoid brought images of my poor baby not being able to move at age 5 and never being able to live a ‘normal’ life. Needless to say I was scared and confused. Ed talked me down from the ledge though, he reminded me that we needed to take things one step at a time…not jump to conclusions.

I called to schedule his MRI and they told me it would be almost six weeks until they could get him in. This was not ok. Monkey’s pain had gotten worse and at this point his right knee was visibly swollen. He would sit in the chair and cry, “Momma, my leg hurt. I go to doctor.” It broke my heart. I called and called every morning asking if there were any cancellations. Finally, one morning I just broke down with the poor girl on the phone. She was so sweet and kind and even though they didn’t keep a waiting list she took my name and number. She called me the next morning saying there was an open spot that Sunday. I thanked her over and over for her kindness and thanked God that He made a way.

We were to go in on February 5 for his MRI.  What a scary thing. I know that there are children and parents out there that are dealing with much worse but for us this was new and to me a little terrifying. To watch the nurses put an IV in your 2 year old and see him shake because of the medication and watch his eyes roll back as it finally put him under…not really something I thought I’d have to experience as a parent. I sat in a rocker while they took the images and I prayed. I prayed that he would be ok. I prayed that they would find something that was easily treatable, something fixable. I watched him closely to make sure his chest was moving so I knew that he was ok. They finished the MRI and put us in a waiting room where I cradled him in my arms as he slowly woke up. All things considered he did very well. He was a little groggy and unsteady the rest of the day but we made it through with out any complications.

Later that week, after many tearful calls to the office, I finally got the results of the scan. He had severe inflammation around his knee. We were then referred to a rheumatologist at Children’s Hospital of Pittsburgh. Again I had to call and call to get an appointment that wouldn’t be two months away. I was so shocked that 1) there were pediatric rheumatologists and 2) that they were so busy! We finally got him in on February 17. Monkey was diagnosed with Juvenile Idiopathic Arthritis. We were told that they would start him on Naproxen and see how he responded to that. I know they told me other things and handed me a bunch of papers but honestly it’s all just a blur.

We started him on the Naproxen and after a few days he still wasn’t doing any better and now he was having severe stomach pain from the Naproxen. I called his doctors and they decided to start him on an oral steroid as well as prevacid to help his stomach. I was starting to feel like a pharmacist giving my 2 year old three different medications every day that he despised. The steroid worked quickly to take down the swelling some but it was so bad that we decided with the direction of his doctors that he needed to have an injection directly into the knee rather than to continue having the steroid course through his whole system. On April 6 (Good Friday) we traveled back to the hospital and he was once again sedated (this time with gas) so he could receive an injection in his right knee and left ankle.

The effects of the injection were immediate. We noticed a huge difference within days and we were very relieved. The doctors told us that the effects could last up to six months or longer…this is of course what I prayed for. Unfortunately, a month or so later his right ankle and left knee started to look swollen. We noticed that after playing for a bit he would get what we call Zombie foot…his right foot would start to turn out to the side and he’d start dragging his leg when he’d walk. We went back to the doctors who said that there was definitely a bit of swelling but to treat it with Motrin and see how he does. In addition to the Motrin we started limiting his amount of play…how sad is that? A two year old should be able to run and jump and play as long as his little heart wants too.