as long as possilbe

It all begin in April,
I took Haden to our favorite Doctor. The Rehabilitation Specialist.
It is the best doctor we have been referred to. She understands his body and his movements. 
She puts him on muscle relaxers, and strong ones, so Haden's spasticity does not limit him as much. She puts him in ankle braces and forwards him to therapies.

Anyhow, we have been a regular visitor of this doctor for at least 3 years now. 
I was expecting this appointment to go much like the last several.  
     "might need to consider … in the future, but he's looking good"

 Nope … within moments of her walking through the door .. it was "I don't like what I'm seeing here." 

We knew that his left foot was angling inward again, and that his movements were more stiff than he had been recently. But I just figured that he yet again needed a baclofen increase as he had been through a pretty recent growth spurt. 

By the time we left the appointment he had 3 x-rays, a request into insurance for fentanyl shots behind his knees, and then scheduled appointments back at genetics, and to an orthopedic surgeon.

I cried in the car, 
I thought he was doing "ok" 

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We were seen pretty quickly from a top Orthopedic Surgeon at Children's Hospital here in Denver. 
John came with me to this appointment.

We waited over an hour past our appointment time for the doctor to get to us. (This is a rare occurrence for us once we moved to Colorado) 

The doctor did not rush his time with us.

He looked at Haden and then said

"WE WANT TO KEEP HADEN AS MOBILE FOR AS LONG AS POSSILBE"

"HADEN WILL BE IN A WHEELCHAIR ……."
     
and that's the first time I heard those words … a wheelchair had never been a consideration
Haden runs … a lot.
He walks down the stairs.  
Sure he has leg cramps sometimes, but a wheelchair?

WAIT … WHAT DO YOU MEAN???
Thank God John was there, when I went silent and heard "wahhh wahh wahhh" he slowed the doctor with questions to get explanations and understanding. 

The doctor explained that it WOULD'T mean that Haden would lose the ability to walk, but that his spasticity (tightness) would be so severe that it is simply way to painful for him to move.

The doctor then showed us on Haden's legs that his knee caps are already beginning to be pulled out of alignment from he strain on his hamstrings. He showed us Haden's foot turn and how ligaments could be "crossed" at the ankle (through surgery) to help his foot be less "club like."
He told us that puberty and rapid growth will be Haden's biggest enemy. And that any signs of obesity will string his muscles more and send him to a wheelchair faster.   He told us about inserting stabilizing screws in Haden's kneecaps to prevent further dis-alignment when puberty gets closer. He told us about possible future 24/7 casting and bracing and I am sure the doctor said a whole lot more in the hour he spent with us. But "wheelchair by late adolescents" and "mobile for as long as possible" kept circling in my head.

Before we left he put Haden on a wait list for very specialized test called "gait lab"
It is way cool technology. They insert small sensor needles into Haden's legs and then using animatronics they monitor the muscles as he walks. (Like animatronics that movie productions use, but actually looking at what muscles are firing or not and when) After the testing a  big team of doctors and therapists review the findings and propose the next several years worth of treatments and surgeries.  This test will happen in early December.


I randomly would start to cry for several weeks following this appointment.
I even had a lady hug me at Sams club not knowing what my tears were for.


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In July we were finally able to be seen by Haden's Genetic doctor.

KDM5C is still considered pretty rare. And there is still very little known about it.

Our doctor looked at Haden and reviewed the medical notes from the rehabilitation Doctor and the orthopedic surgeon. 
She found that Haden's genetic condition is linked to "slowly progressive spastic paraplegia" 
And explained that this diagnosis fits all that the doctors are seeing in Haden and his movements. 
It means Haden WILL keep getting tighter, and he will end up in a wheelchair at some point. Baclofen, surgery, sedated muscle relaxing shots, lots of doctoring, and "mobile for as long as possible" has now become my new mission for him.

An answer to a question I never asked.
And I cried before even leaving the doctors office


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There have been so many tears these past few months. 
So many moments of working myself to a stronger point of acceptance.

I know we are in the right spot for Haden to get amazing care from truly wonderful doctors.
I am finally to a point where I can say "slowly progressive spastic paraplegia" without my voice cracking and needing to wipe away tears.



And I only cried for a few minutes after the DMV to get us a handicap placard for Haden.



It's a whole different world of emotions raising special needs kids.
There is so much pain and yet so much joy. 
And there are God's people who will love us though it all.