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.

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.

Words are Hard to Come By…

I have been searching for the right words to update because we have been dealing with a ton.  And quite frankly, it gets harder and harder to share difficult news with people who we know care and love us dearly.  I want to desperately share only amazingly good news…unfortunately we have been bashed with more challenges.

Since my last update, Parker was discharged a day early from the hospital, at my request, so that we could check him into school on the final day of FTE week.  This is an important week in schools, because if children are not present at least one day that week, then the school doesn’t get their funding for that child.  And because Parker has an IEP, his school gets more money to support him.  We know that Parker requires more supports and work, so I really wanted to help the school out by getting him there.

As we left the hospital, we got his final test results.  Parker has been receiving replacement therapy because he does not make cortisol and due to this his adrenal system tries to shut down.  Well, even with replacement therapy, his levels were still low.  We were informed that I probably shouldn’t have transported him to the hospital last emergency.  This last time was a really close call because his adrenal system shut down and we could have lost him.  So, now his daily replacement cortisone has been doubled and we have been given an “emergency shot” to carry to save his life.  Now I carry an epi-shot and a cortisol shot for him.

We also got his MIR results.  His SI joints are inflamed and there is much synovial fluid around them with the left being worse than the right.  This would explain why he has had increased pain in his hips, groin, and lower back.  And apparently there could be a connection with the SI joint issues and his feet issues.  His doc is really confused by the SI joints issue.  This is not a common area of involvement with systemic JA.  She has been thinking on this and has asked us to give her until next week as to a plan of treatment regarding this newest discovery.

I cannot imagine how hard all of this constant bad news is on our son.  And I have to marvel, that despite all of his incredibly difficult health battles that he continues to persist.  And although he didn’t make it full days to school this past week, he went every single day.  He went because he is desperately trying to have some normalcy in his life.  He went because he is part of a community and is proud that he has achieved something that is important to him.  He went because this is the place where he is around his friends who encourage and support him and make him laugh and smile.  He went because to him, school is his safe place, a place where his is accepted, and a place that fills him with hope for the future.  And each day that he climbed into the car at the end of the day, he did so feeling accomplished.

School has been his motivator.  He sets goals around school.  And although the make-up work has felt overwhelming, he has been mapping out a plan to accomplish it.  He even has a dry erase calendar to write out tasks in chunks.  He has been emailing his teachers, checking the online system, and prioritizing tasks…determined to succeed this year. 

Michael and I have marveled at his emotional growth this year and how much he has taken initiative.  One prime example of this is when he was added onto a group presentation this week.  The kids he was grouped with at the last minute never sent him the slides he was to present on.  So Parker took it upon himself to create a whole new presentation in PowerPoint from scratch to present on.  Now this is impressive…especially given how much make-up work is on his plate.

Friday was the last day of the grading period.  So, of course, we knew he would likely have to get incompletes.  Since the start of school, he has had lots going on medically, has missed days of school and has had two hospital stays.  We have worked hard to try to schedule all his medical appointments at the end of the day and when scheduling his upcoming surgery, we even went in and met with the principal to try and decide when to schedule the surgery so that it would have the least impact on school. 

For a kid that his endured incredible amounts of difficulties, you can imagine our devastation when we were told that he could no longer attend his school because this school is too rigorous and he is absent too much.  The depression has officially set in…for all three of us.  We have been processing, trying to think of our next steps, trying to figure out how to best meet his educational and medical needs… and we will figure out a plan…but for now, we ask that you just support and love us and pray for our strength.