Parker is working on a blog post to share with everyone
about how he “walked the entire walk” and how thankful we are to all of you…but
in the meantime, we wanted to share that he is going through some pretty big
stuff right now. Recently his rheumy
shared that she believes that he has an additional overlap disease of ankylosing spondylitis. As we shared previously,
his SI joints are complete inflamed and huge on his MRI. For the last couple of months, his doc has
been trying to get a new biologic shot approved (stelara). Unfortunately, even with an override request
it still wasn’t approved. So, the next
step was to get approval for another biologic (simponi). The bummer is that this med is an infusion
which means we will be traveling back again to the infusion room for treatment.
Parker is really in some considerable pain from the SI
joints, and although we tried the nerve stimulator, it didn’t work and had to
be removed. We are going to stay hopeful
that the new biologic will be helpful for his SI joints, along with helping his
jaw, shoulders, back, hip, neck, knees, ankles and feet. But we are seriously taking a huge leap of
faith with this new step forward.
The biologic that Parker is currently taking targets his systemic JA issues and this included his rashes, fevers, and
internal organs. This switch is pretty
scary for us. His doc has checked his
heart and it is good right now, of course that is our biggest concern. So concerning that Michael spoke up and asked
the doc about it. And instead of saying “what
about his pericardia effusion” he asked “what about his periodic confusion”…I
wish you all could have seen her face, the hesitation as she tried to
comprehend what he said was hilarious (oh what stress can do to one’s
communication)…and she replied, “I don’t know what to do about your periodic
confusion, but we can check for pericardia effusion and keep a close eye on
him.” I tell you, there are so many
moments that Michael makes me laugh, but boy the moment was priceless…we all
started laughing. And oh how we needed to
laugh.
So, as we take this new leap of faith, we will be travelling
back to the infusion room starting this week.
Please keep our kiddo in your prayers and thoughts. Much thanks.
