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.
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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.
