Sunday, November 13, 2016

Parker wants me to share…

Parker asked me why I haven’t blogged lately.  I told him that now that he is older, it really is his blog and his story and I didn’t want to say things that he may not want shared.  He asked me to please blog and tell everyone what is going on, because he has such a hard time staying awake lately and because it is OUR story…our family’s story.  So here I am, writing, and realizing I have also been avoiding voicing out loud that this life with autoimmune issues has been so very draining on all of us.

I have been going through all kinds of tests due to my own autoimmune issues.  Logan has been flaring for about a month and like me, I think he is trying to avoid more medications.  And Parker seems to conquer one thing, just for another issue (or two or three more) to arise.  Michael and I are realizing we barely have time for much else…we want to work on our house, which has been neglected since this journey has begun.  We want to spend time with friends, but barely have down time.  And the thought of adding holiday decorating to our to-do list is just one more thing to do…and yet, we want to because the result is joy and a reminder that life is precious.

We want to keep celebrating life’s joys, create simple moments with beautiful memories, and keep a focus on what is going right.  And yet, we know, that all of you want to know what is going on with Parker.  And somehow, writing is all down, brings it to the surface.  I realized yesterday, as I spoke to a friend, that I have been trying to smothering it all down inside of me in my efforts to stay as joyful as possible.

I feel like I have lists upon lists…So here it goes…Parker’s “list” of medical needs:

  • Parker’s blood labs have been up and down.  Some are decent and some are yo-yoing. 
  • His uric acid is high.  He sees a new doc, a nephrologist, next week.  This is doc 18. It is possible that this is due to one of his meds, which we have temporarily stopped and will re-run labs this week.  Or his kidneys are somehow being affected by this mean disease.
  • Despite all the things we have tried to do to help his SI joints, they are still bad.  He is having another MRI, at UF Shands, in the near future.
  • He is still thinking about continuing the nerve ablations…this is a tough one because he was awake for the last one and it was horrible, but it did help.
  • We think he has a leg length discrepancy, so a scan-o-gram is ordered.  His bones will be measured and he may need a lift in his shoe.  Let’s see how that goes since we still can’t get his shoe orthotic inserts, post-surgery, approved.
  • He is having blood pressure and temperature issues after showers and doc wants him to go back to cardiologist, which is two hours away.
  • We need to remove his port in the near future because he has grown out of it and it is pulling.
  • He needs to go back to his regular ophthalmologist because his eyes keep getting really red.
  • He has a swollen area on the side of his neck.  So, we have an ultrasound scheduled, since it is near lymph nodes and thyroid.
  • Doc is trying to get a new med and a new biologic approved.
  • We took him to orthodontist and he needs invisaline and botox injections in his jaw.  Cha-ching…  Doc had others come over and feel his jaw joints because he said they were tighter than anyone’s he has ever felt.
  •  We took him to GI doc (actually Michel did…thank you dear God for this man in my life) due to blood in stools and it is likely due to fissures…whew.  Easy solution.
  • He is having some pulmonary issues again, so back to pulmonologist and needs to also schedule another sleep study.
  • And finally, doc is trying to get him in to NIH with a doc doing genetic studies on kids with multiple autoimmune issues.

Needless to say, this is a lot for a kid to process.  He is doing the best he can with the extreme fatigue in his body.  And for all those people who unknowingly ask about school…to make conversation…oh my word…it breaks my heart every time.  He has various answers for this based on who is asking, but there is always a major pause…The medical stuff seems to consume us. We know and he knows he must get his GED finished, but oh my word, sometimes it just feels like it is the least of our worries.  But he will get there one day.  When it happens we will have a party.

So friends and family, please be patient with us.  We know we don’t connect much and our interactions have been minimal.  We wish we had more time to visit, chat, and go out.  But please also know, you are all in our hearts each and every day.