A Video Update from Parker...day 3 post op

Oh what a difference this afternoon...Parker is quite happy with his progress and you can see the joy on his face in this video.  We are so happy for him.

Click here to see and hear from Parker

1 Step Forward, 2 Steps Back...By Parker

Have you ever heard of the saying “1 step forward, 2 steps back?” 

Well, never before has that saying felt more true about my life than now. 

All the "steps" taken to correct my feet/ankles over the last 8 years.
Bottom row is before surgeries  Top row is after surgeries.

As most of you know, I had my 4th ankle surgery this past August. They put 2 screws in and did a subtalar fusion of my foot and ankle. Earlier this year I finished doing physical therapy (PT) on it and for the first time in 5 years I haven’t had to use my wheelchair. 

Top right foot with 2 screws.

Side right foot with 2 screws.

Since that surgery I have only used my wheel chair for Disney trips; and I have been walking an average of 3,000 steps a day. This might not seem like a lot, but compared to before the surgery where I was walking less than 1,000 steps a day, it’s a big improvement. But that is just the beginning, for the past month I have been walking much more than that. At physical therapy I have been training my endurance and stamina by walking on the treadmill for 6-8 minutes at 2mph (Ludacris speed). And I do that up to 3 times in the hour that I am at PT. The main reason that I have been doing this is so that I would be able to walk the full mile at the Walk to Cure Arthritis this year, in under 30 min. And it was really looking like I was going to be able to meet this goal. Until yesterday.

Yesterday I went to see my surgeon because for the past month or so I have been feeling a bit of a sharp pain in my ankle when I walk too much. Now normally this wouldn’t concern me because I would just assume that it is some kind of arthritis pain, but ever since I got the same surgery on my other ankle I haven’t felt any pain like this. So, we decided to go see the surgeon and get X-rays. And this is where we started taking steps backwards. The surgeon came in with the X-rays and showed me where the screw is and explained to me that my foot never fused all the way and because of that the screw has become loose. And because the screw has become loose, whenever I walk the top of the screw is being pinched. 

Notice back space around screw.

Where the tip could be pinching since loose.

Then, I asked him what could have caused this to happen. And he said that there were a couple of reasons that this happened. The first being that since I have osteoporosis it takes much longer for my bones to heal, which is why I used a bone stimulator after the surgery. Another reason is because I haven’t been wearing a brace since the middle of November, and this isn’t because I don’t like the brace or anything like that. It’s because our insurance wouldn’t approve the script for the brace because I don’t have diabetes. Which is such a stupid reason. So, now because the dang insurance didn’t approve my brace, my ankle wasn’t held stable and never fully healed. So thanks for that.

But it was the third reason that could have caused this problem with my fusion that really got to me. The doctor told me that because I have been walking so much and training so hard at PT, I had inadvertently caused my screw to become loose. And that was just devastating. I had been working so hard, pushing myself so much, and to find out that because of that I had been making myself worse…it just killed my motivation, my spirit, my drive to keep working harder at physical therapy. I was heartbroken.

So then I asked the surgeon what I can do to prevent this from getting worse, and he told me a couple of things. First, he said that I need to get a new brace for my shoe so that my ankle is supported. And now that we have new insurance hopefully they will approve it. If not, then we will have to pay out of pocket for it because we really don’t have a choice this time. Secondly, he said that I need to start using the bone stimulator again, which is no problem. It was the last thing he said that felt the final blow. He told me that I need to stop walking as much for 2 months. That means no weight baring training for the walk at physical therapy. If he doesn’t clear me in 2 months to walk fully again, that could mean that I might not be allowed to walk the walk. And that’s when I took the second step backwards. All the training that I have done for the last month was for nothing. Because now I can’t train for at least 2 months; and by then it will be time for the walk.  I won’t be prepared to reach my goal of walking the full mile in under 30 minutes. So I asked the surgeon what I was allowed to do. I am allowed to walk without the brace in the house to the bathroom and to get a drink. I am allowed to walk around outside the house and in stores, as long as I wear the brace. But there is one caveat. The moment I feel that pain in my ankle, I am no longer allowed to walk until it completely goes away. It’s hard because if my foot doesn’t heal and fuse correctly, he might have to go back in for surgery to re-fuse it. It just sucks because I thought that I was finally done with my feet and ankles. I thought that I wasn’t going to have to worry about them anymore. I thought that after 11 pairs of braces/inserts and 4 surgeries, I was finally done. But I just keep taking steps backwards.

 

With each new step, I keep growing.

Come walk with me at the next Walk for Arthritis:  Parker's Purple Playas walk page

Once you get to the page, click on "Parker's Purple Playa" to join our team.  It's free.

Right Foot, Left Foot..No Good Feet

We have this kid who never gives up no matter what…Parker’s body doesn’t seem to have the same drive as his spirit does.  All my hopes and prayers are for his continued strength and healing.  For the past three weeks it seems that he has been having more and more increased pain in his back, neck, and jaws.  We have adjusted meds but it is not helping.

Tomorrow we are going up to Shands Hospital.  He has a late set of MRIs for his jaw and SI-joints in his lower back.  Back in November his SI joint MRI revealed huge amounts of swelling.  He had them injected with cortisone and has been taking meds that target this area, but the pain is intensifying.  I can’t remember the last time he hasn’t woken in the middle of the night due to pain.

And back in 2011, he had jaw issues and there were some issues on that MRI but the jaw has been fairly quiet until now.  So his doc is concerned that one of his overlapping conditions might be contributing to these flares since it is not common to have SI involvement in kiddos with systemic JA.  I actually giggle when I hear “not common”…like a nervous laugh…because nothing seems common with Parker.

Today a dear friend shared with me that her heart broke seeing Parker struggle through the family walk kick-off last weekend.  He came in his wheelchair and rested his head on the table as he slept through the entire event. Then, he asked to leave without even lunch nor going through the museum.  She said she always sees Parker smiling but he wasn’t last Saturday…and it so choked me up.  He wants to be present and a part of social interactions but he just cannot seem to maintain. 

He had a friend over this past weekend to play video games (a great pain distraction by the way) and after less than an hour he came out and said he just can’t do it anymore and needed to rest.  It is clear to Michael and I that something is not right and we are so fearful of what the labs and MRI will show.  The doc has said to pack our bags because she will likely need to admit him on Friday. 

The last few rounds of PT have been literally torture for him…and yet he doesn’t give up as tears stream out the corners of his eyes.  The PT checked his right foot (the one that he didn’t have this last surgery on) and he was manipulating it in a way it should not move and then advised me to call the doc because it could mean that the cadaver bone that was put in his foot back in March 2015 may have also been rejected and absorbed into the body because it was feeling like it wasn’t’ there.  It just breaks my heart beyond words at the thought that Parker might have to get his right foot/ankle fused too.  So we asked the doc to also set up an x-ray for tomorrow since we will be at radiology anyway. 

I am literally choking back tears for my kiddo.  I pray for understanding where there is no way I can comprehend what is happening over and over to my sweet kid.  This disease has literally taken his childhood from him and he knows it.  And yet, somehow he carries himself around each day on those horrible feet and ankles sharing his smile with the world and comforting others.

We will continue to fight with all our might for him and for funding for a cure.  We must because it is the one positive thing we can do.  Please know that we so appreciate every text, the sweet cards of encouragement many of you send to Parker, and every single penny donated to his walk team.  There are so many kids that need all of our support.

I will continue to update on Facebook as I can this weekend.  And I will try to update the blog too to keep everyone up to speed.  Just please continue to shower us with prayers, love, hope, and strength.

 And if you want to help, just click on the “want to help” tab at the top of our blog.  Much gratitude and love.

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.

Living in the Moment…

We really try to live in the moment…yes, sounds cliché but it is true.  We’ve learned that living in the here and now is much easier than looking too far into the future of what’s to come.    And we put much faith in believing that we are doing the best we can with each moment…and that is all we can do.

We are rounding up the end of the school year.  Logan has been done for several weeks.  He graduates from high school with an AA because he did early admission into college his senior year.   He received one scholarship and is waiting on several others.  This fall, he will start his junior year at the University of Florida, as he moves towards his dream of becoming a pediatric rheumatologist.    We are incredibly proud of him and we are packing in as much fun as possible, with our grown-up kiddo,this summer.

Parker has missed much school this year because of his chronic illness, the pain it causes, and because of the major reconstructive surgery he endured.  He’s been going back to school part days as much as possible.  He is only two weeks away from the last day of school; and he is still unsure if he will be able to proceed to the 10^th grade.  This is causing him much stress even though we are stressing to him that he can only do his very best and we will support him moving forward no matter what happens.  As much as we try to explain to him that his health had to be taken care of first, it is very hard for a 15 year old to watch his peers move forward over and over…often leaving him behind (in many ways).  In the big scheme of life, we all know that his health is his “life”…but oh how it hurts our hearts  to know that he knows that his friends go “out on the town”, have dates, go to all kinds of fun events, play sports, drive cars, and do all kinds of fun “teen things”.

So we try to focus on the JOYS…Yes, Parker went through a very intense surgery on his legs, feet and ankles and it was way tough beyond words…but now he is walking and he is aligned and his pain in his feet and ankles have gone from a daily 10 plus, down to a 6.  And he doesn’t need his wheelchair much at all.  He even walked across the finish line at the walk, only 2 months after surgery.  And…Parker and Logan made their walk fundraising goal and raise over $10,000 with nearly $13,000 raised this year.

Some of you know, Parker has struggled with some heart issues.  His blood pressure is running low and his heart rate is running really high (even when at rest).  We have been working with all many of his specialists, along with is primary doc.  In fact, his primary doc has felt that he is so complicated that she would like him to see someone with more expertise coordinating multiple health issues.  So she has sent all his records to a pediatric critical chronic care specialist at our local hospital and we are waiting to get him in.  We have done our very best to try and get him the help he needs without the trauma of a hospital stay.  And the last month has been way intense with lots of tests and specialty visits. 

We have been working closely with his pediatric cardiologist and he really feels that this last surgery triggered his autonomic system to go haywire.  And although he sees this more often in teen females, he has seen this happen in a few others after surgery on limbs.  He feels that Parker has autonomic dysfunction or POTS.  His heart rate actually went over 200 right in the doctor’s office during his EKG…  The cardiologist said the heart monitor he wore confirmed his concerns and since then, he has worsened.  He is also having some GI issues, trouble swallowing, difficulty urinating, and sweats/chills.  So, we are trying to control the symptoms, while we try to figure out what hospital to take him to.  There are only a few in the US that deal with this. He said the wait time is usually 2-4 months to even get in and he will be there a minimum of 5 days.  Our choices are Mayo Clinic-Rochester, Cleveland Clinic, Children’s Hospital of Philadelphia, and NYU.  Vandy has one too but they really only treat adults.  So in the next 2 weeks, we are trying a few things and researching to figure out, given all his issues, which hospital would be the best.

In addition, we have been working on approval for 2 surgical procedures that he hopes to have this summer so that it doesn’t interfere with school.    One procedure is neck nerve ablations and the other is insertion of a nerve stimulator in his back for a trial.  The cardiologist feels that he can proceed with these procedures, but I have to admit, I do have my reservations.  But Parker has a ton of HOPE with what these procedures could do to alleviate his pain.  He dreams of getting off of pain meds and learning to drive.

On a joyful note, Parker's papallidemia is healed and so no more pressure on his optic nerves and they are almost completely restored.  This also means that the psuedo tumor is likely healed too!  Thank God!

Also, we are celebrating that Parker was nominated by his school for the Prudential Presidential Community Service Award and he won this year.  It was a complete surprise and he walked to the stage, in front of his cheering peers, to receive this amazing recognition that only the top 10% in the nation receive for their service.    

He is also thrilled that he got into Camp Boggy Creek for a week at summer camp.  This camp is really special to him and he really feels it is his heaven on earth.  This year, Michael’s work has a promotional fundraiser to send kids to camp too…I just love that they see the benefit of this amazing camp and what it does for kids with serious illness so that they can enjoy some serious fun!  We hope all of you have some serious fun planned this summer.