Parker’s Medical Marathon

As we started our week, Parker and I began to joke that we were ready to take on “Parker’s Medical Marathon”….He had 7 medical appointments at Shands UF Health.  Last week was totally exhausting with some good news and some not so good news.  We are processing everything and Parker has a lot more appointments in the future.  The glorious news is there is no tethering on his spinal cord; so there's no urgent surgery needed, and he can go to the JA Conference.   We really needed this small miracle.  He does have some spinal damage (35% curvature with scoliosis), swelling with ligaments/tendons, and herniation in thoracic spine (that was a surprise because he has pain in lower spine and neck, not this area). 

Next steps, we must deal with his scoliosis, the numbness in his limbs, his disfunctioning bladder and his bowel issues (pain in left quadrant and a bit of again).  All these issue could be related.  So the docs collectively feel we need to see the head of pediatric orthopedics, since she is a scoliosis specialist and scoliosis is a pediatric issue.  We have also been referred to neurology and they will team together to try and figure things out.  

In addition, we have scheduled a colonoscopy to see if Parker's motility issues have progressed and to hopefully figure out the source of the lower left belly pain. There are also issues with his bladder/urine...but still need more info.

Rheumatology was an intense visit. His biggest complaints are his neck and shoulders.  He is going to try massage therapy in this area.  His newest biologic shot doesn't seem to be working.  We are giving it 2 more months, but then she doesn't know what to put him on because he has exhausted all the biologics, except one (and not so sure that it will work with what is going on).  They also scheduled an ultrasound of multiple joints.  When scanning his left ankle and foot, there was a gasp...it does not look normal at all and bones could be crumbling; and there is something else going on because it looks like there is blood flow on the ultrasound where blood flow shouldn't be happening.  This could indicate inflammation.  So, now we are scheduling an MRI of that foot and ankle, too.  And then, we discovered his papilledema (swelling behind eyes) is back.  I cannot even begin to tell you how my heart sank in that moment.  His vision is blacking out again with change is positions.  So we go back to neuro-ophthalmology at Bascom Palmer.

His tibia breaks are healing but not fully healed yet.  He is pretty ticked off that the doc is making him use the wheelchair at conference, to get to and from locations, but then he can get up and walk, no more than 1,000 steps this week and then 2,000 next.  Each week he can add 1,000, until he hits 5,000, when we go back to doc.  He will start PT in 2 weeks.  He is excited about getting back to PT and hopefully ditching the wheelchair.

We are all trying hard to focus on the good...that his spinal cord is ok...but Parker and I are really exhausted and feel so defeated with all the other news.  We know that Parker’s Medical Marathon is not done and we are pacing ourselves.  I guess this is why they call it “chronic illness”.  This morning I saw a quote that spoke to me…”The only impossible journey is the one you never begin.”  This journey has been really difficult this summer. Although the path is not one we would have chosen, we are hopeful it is taking us where we need to go.