Bracing Oh Me Oh My

There are some things that have never worked out easily or well for Mason.  One of those things is bracing.  Mason has three different braces currently. 

1. Scoliosis brace - this is the one that works well, fits, easily, and we've had no major issues with.  He wears it at night when he is sleeping.
2. AFOs (Ankle Foot Orthotics) - these short braces look like little boots and hold his feet in a neutral position, keeping the tendons stretched out.  These mostly fit but we are having trouble with pressure on each heel - we needed changes.
3. HKAFOs (Hip Knee Ankle Foot Orthotics) - these braces go from Mason's waist clear down to his toes in a combination of straps, plastic, foam, and metal.  They hold his body in a standing position but give him no balance.  They are used in conjunction with his Dynamic Stander, a wheelchair that he is upright or standing in.  Why standing? While Mason will never walk functionally standing has many health benefits for his bones and body systems.  This bracing has been the most problematic over the years due to muscle contractures and growth.  It is difficult to fit Mason currently because his left knee doesn't straighten all the way and things apply pressure in weird spots, and sometimes it has been impossible to fit because of foot contractures that keep his foot from going to a flat standing position.  Pressure can damage skin.

We headed to the orthotist yesterday to refit Mason's HKAFOs now that his right foot surgery has been done and healed and to adjust his AFOs. He was excited. As is often the case, this appointment took a couple hours and we will probably go back again for more adjustments in the next 6 weeks.  Here's what was done:

AFOs - both heels got cut out of these.  In their place is a foam-ish structured material (the same as the 'tongue' of the AFOs).  This has some give to it and won't apply pressure the way the plastic did.  I think this will be a good change for Mason.

HKAFOs - so many changes to these.  They lengthened the metal frame because Mason has grown taller.  There was moving the AFO portion, moving various Velcro straps, adding longer strapts, and moving and flaring the blue back plastic portion. 

All of it looks okay at first glance.  We know that usually we need to make more adjustments after Mason has some time wearing them and we see where the pressure points end up being on his body. 

His left knee is contracted, it won't straighten all the way, so it remains a bit bent.  It will probably need some padding to keep it from pressing against the metal bar on the outside.  The other leg stays a bit bent to match and keep from applying torque to his back, so it may need some padding too.  And knee stabilizing straps are possible.  Or a thousand other small and large things!

Once Daddy got home from work Mason wanted to show off the HKAFOs so we got a few cute pictures.  I love this one because it shows just how much upper body and core strength he has been building.  He's not able to balance.  Not at all.  But when daddy keeps him balanced he can lift his arms above his head without collapsing forward at the waist.  Mason looks so tall standing!

The most precious thing that happened I only caught with this blurry photo.  Samuel and Mason hugged.  It was sweet to see how happy they were together.  They just hugged and hugged. Brothers are wonderful!