Wednesday, March 16, 2016
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.