A little bit of history:
Mason and Dr. K met when Mason was just days old in the NICU to evaluate Mason's clubfeet.
Remember this sweet little man? This is a pretty good view showing how bent and malformed both of Mason's feet were.
At 2 weeks old Mason began a series of Ponseti casts to correct his clubfeet, applied by Dr. K. Every week or so the casts were changed.
When he finished that process Mason was fitted for a foot brace and bar that he wore 23 hours a day to keep his growing feet and ankles in the correct position. Eventually he graduated to wearing the brace only at night. The goal was to wear it for several years to lower the incidence of the clubfeet relapsing.
Unfortunately for Mason his spinal cord tethering caused symptoms in his hips and feet. He rapidly developed contractures, mostly on the right side, and we could no longer put his foot into a flat position or straighten his ankle. This meant Mason could not wear his foot brace because we couldn't get his foot in them without leaving bruises. Mason has not been able to wear his foot brace for 10 months. He has not been able to wear his HKAFOs and use his mobile stander for 10 months either.
We had an evaluation with Dr. K today and came out with surgery plans. Mason's left foot, which has tightened up some, we are going to do some serious stretching with and it should loosen up enough to comfortably get into a flat/neutral position. His right foot and hip need surgery to cut tendons and let them regrow longer.
Both surgeries will happen at the same time in a 3 hour process. They anticipate a 1 night hospital stay. Then we go home and wait 6 weeks for his cast to be removed. The uncertain part at the moment is just what casting/bracing process they will do after surgery. There are two options in the front running.
- Option 1 - A long leg cast from toes to upper thigh. This would be combined with some sort of hip brace the doctor referred to as a mermaid brace. It keeps both legs together to stabilize the hips during healing for 6 weeks.
- Option 2 - A 6 week cast from the toes of Mason's right foot clear up to his chest. I have no clue how we would manage things like sitting in his wheelchair or carseat or anywhere. I suspect the nightly enema to get Mason pooping is going to be a disaster with either option. Oh the joys!
The only snag in the surgery plan is that they are scheduling out into August already. Mason won't get any of this done for months unless something opens up before then. I'm sure God has a reason for the timing. For now our plan is to just enjoy the summer without casts!
My Questions for those Familiar with AFOs, especially if your child has Spina Bifida or a lack of sensation and muscle control:
Here's where I would love your help! If you have a child using AFOs can you give me some ideas of where to find socks without seams? With Mason's lack of feeling in his legs and feet we'll be extra diligent about doing skin checks often but I know we'll need some new sock options. And SHOES. We will finally be able to purchase shoes for Mason after this surgery. What shoes tend to fit well over AFOs? Can they be purchased with a different size for each foot? Mason's feet are different sizes by a good bit. Do you have any other tips for me regarding AFOs?