4th Foot/Ankle Surgery by Parker

As I am writing this, I am less than 24 hours away from my 4^th foot/ankle surgery. I am actually excited for this surgery because last year I had the same surgery on my other ankle; and since then I have been walking more. So, I know this will help, but part of me can’t help but be a little nervous. However, I am not nervous about the surgery but what I am nervous about is the recovery.

The recovery for this will be anywhere from 2-4 months. I will probably have a cast on for about a month, then a boot for another month after that. Next, I will have a brace that goes up to just about my knee for a month, then one that just goes above my ankle for another month after that. Meanwhile, during this whole process, I will be doing physical therapy. The part that is the most annoying to me is having to shower with a cast. Luckily, I have done this before so I know what I’m getting into.

So I sit here thinking to myself, how am I going to do this?  The first thing that comes to my mind is one of my best friends in the whole world, Kristen (Kmac), and how she is the strongest person in the world. If you didn’t know, Kmac ended up paralyzed due to her arthritis. Now she lives her life in a wheelchair. But that wheelchair doesn’t hold her back. Kristen still lives her life to the fullest whilst being completely independent. But the reason that Kmac is the first person to come to mind is because of something that she said to me earlier this year at the Houston arthritis conference. What she told me was that before she was paralyzed, she was in constant pain but at least she was able to walk; and now that she can’t walk, she isn’t in constant pain. It was what she said next that truly inspired me. She said that she would go back to being in constant pain if that meant she could walk again. So for the rest of that trip, I refused to use my wheelchair when I was with her (which was all the time), because I felt that since I do have the ability to walk; I should use it no matter how much pain it caused me. On the last day of the trip, Kristen came up to me and told me that she was so impressed that I walked the whole trip even though it caused me to be in immense pain, which meant the world to me. She then said that she wanted me to use my wheelchair that day. So I did and that trip made me realize that I am capable of far more than I realize.

The next week I went to camp to be a counselor and I decided that I wouldn’t use my wheelchair for the whole week. And you know what I did? That week I may have had to take extra meds but I walked a total of 60,000 steps. That was even more than my dad had walked that week. So at the end of the day, I want to thank Kristen for giving me the strength to get through this upcoming surgery tomorrow. And to you, Kristen, if you are reading this, in my eyes you are the strongest person in the world; so keep fighting and I love you girl.

Difficult Decisions…

For many years I have felt a bit obsessed because my constant prayer has been for Parker’s healing…But I am not quite sure when that prayer shifted to: I just want what is best for him and for him to experience joy in his life.  It was probably a little more than a year ago.  I think it shifted when I tried to begin understanding what his precious life’s purpose may be. 

The struggles that this child has faced have been plenty and as a mom, each struggle is incredibly difficult to witness.  However, I will never give up on him; I will forever be his biggest cheerleader; and I will always stand beside him with pride and love.  I know some feel that we have made some wrong choices and by being public with our story, we have made ourselves vulnerable to judgement.  But what is right for him and our family is simply that, right for us.

The decisions made are carefully weighed given all of our circumstances and options.  Ultimately, we have to trust and have faith that we are on the right path for us at this point in time. 

So, in trying to decide what to do about school, we did indeed consider all our options.  For goodness sake, we have already tried hospital homebound, virtual school, traditional school, charter school, part-time school, and combinations of all these.  We know our legal rights; we know his IEP gives him the right to a least restrictive and appropriate free education; we know that we could continue to pursue…but what we also know is that Parker is fighting for his life and let me tell you…it is completely and utterly heart wrenching for us and totally exhausting for him.

We took much care in explaining to Parker all of his educational options.  What is most important to him is one, friendships and two, getting better/stronger.  We met with the school and they have agreed to allow Parker to continue to go to lunch with his friends at school, to attend events, and to volunteer.  He will also continue with one of the clubs he has been involved with and be a part of the community.  In addition, he is going to pursue his GED and then go to our community college.  This will allow him to focus on his medical needs and not have as much educational stress.

This decision wasn’t easy for him.  In addition to thinking about his education, he is also trying to deal with many medical decisions.  He will be getting his foot fused in about two weeks and once we over this first hurdle, then we will focus on the rest.  So, I ask that you simply pray and continue to shower our sweet son with love and we will continue to hope.

And to all who have reached out, we are so very grateful you are part of our lives.

Here We Go Again...by Parker

So these last couples of weeks haven’t exactly been the greatest. My arthritis has been at war with my body. I have started getting flares again and that’s pretty weird considering how I was feeling before this flare. Things were really good, I was making it to school almost every day and I wasn’t even using my wheelchair.

But then, all of the sudden, it was like a bomb got set off in my body and that bomb hurt. First it was my lower back, shoulders, and neck that started hurting; so I switched to a rolling backpack. The next thing I knew was my ankles and feet were being attacked. If you look at the picture to the left and look at the red circle, you would probably guess that bump is my ankle. Guess what, it’s not.  That is actually the bone in the arch of my foot trying to push out. This became a problem because I’ve been wearing braces since the surgery.  When I walk, that bone hits the hard plastic and very badly hurts.

In addition to all this, I started having daily fevers again. Now I know that fevers are a symptom of systemic JA but I take a drug called Rilonacept and that drug is supposed to do 2 major things for me. Those 2 things are to keep my pain and swelling at bay and to suppress fevers. So when all this stuff started happening, we were pretty concerned.   

Then, another pretty weird thing happened. There are 2 joints on my body that don’t swell too bad, and those are my elbows and knees. And guess what, my knee got huge this week. Just look at the picture to the right. I mean really, if I didn’t know any better I’d think that was a thigh. The next day I woke up and my knee was still pretty huge.  We called my doctor and she said to go to my orthopedic surgeon to see if he would drain it. So we went to go see my surgeon and he wanted to take some x-rays of the knee before the appointment.  Since  we were there, he wanted to also get some x-rays of my feet and ankles. Well by the time we got up to his office and ready to see him, my knee had gone back down quite a bit. But he still wanted to look at my surgical site x-rays, especially my feet x-rays. And this is where everything went down hill.

If you look at the x-ray to the left, in the red circle you can see what my foot looks like with the cadaver bone fusing with my bone. And it looks pretty good. But if you look at the x-ray to the right, in the red circle you can see where the cadaver bone was located. And well, it’s not there, it’s gone. It was basically rejected by my body and was completely absorbed.

Now my bone has a gap where the surgeon had severed it during the surgery.  And all this time it has felt like the bone is trying to escape my body by pushing out the side of my foot because it is actually pushing out and my arch is completely collapsed again.  As you can imagine, we decided that it’s time to switch to a new drug called Ilaris, as soon as insurance approves it.

So you may be asking, what does this mean? Well, it basically means that the surgery didn’t work in my left foot. And on November 18^th 2015, I go back into surgery but this time to permanently fuse my foot. This was a lot for me to take in and I’m doing the best I can to stay positive. So, I want all of you to remember that you’re never fully dressed without a smile.