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.