Monday, May 12, 2014

Surgery 13 on the Horizon - Mason Updates

It has been weeks since I've posted any updates here about Mason.  Sorry!  Mostly that is because we've been in waiting mode.  He has recovered beautifully from the spinal cord detethering he had on March 17th.  He has been happily enjoying life.  The waiting game has finally moved ahead a smidge.  This morning Mason had the big appointment with his orthopedic surgeon Dr. K. 

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. 

Today's Appointment

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!
After the cast is removed Mason will become the proud owner of some new equipment: Ankle Foot Orthotics (AFOs).  Basically these are plastic and go under his foot and behind the calf, with Velcro straps to hold them on. They will help keep his feet from tightening up again. He will wear them pretty much all the time.  This means he will no longer need to use the foot brace with a bar between the shoes at night, something I find very exciting.He will also get refitted for HKAFOs once the hip is healed and be able to get in his mobile stander, which is exciting!

Still Waiting!!

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? 


  1. Tristan,
    We pray for your family every day, I understand the trials that are put upon a mama that home schools many children and has kiddos that need lots of extra attention. We continue to keep Mason as well as your whole family in our thoughts and prayers!

    While I do not have a kiddo going through AFO I do have a sensory kiddo that cannot stand socks with seams. We purchase his socks from these are the one of the only socks that work for him. I cannot help with your other questions but I hope this is helpful to you.

    1. Thanks a bunch Nicole, the prayers help! And I'm going to check out the socks!

  2. Tristan,
    Each "company" makes a bit different AFOs.
    Our orthopedic technicans make ones with a leather-coated inner-shoe.
    The are fitted to the foot very tightly.
    Amaya can't wear "real socks" under them.
    We use tubular bandage as socks and if it's not very hot summer we put real socks over the AFOs.
    Some people with older kids color the tubular bandage since the white is too boring for "big kids".
    As for shoes: There are special shoes that fit over braces. Ask the people who make the braces. Maybe they even get covered by the insurance. (Or they pay a bit at least)
    You might also look on ebay as soon as you know the size and width Mason needs. Some shoes are like new if they have been worn by children who don't crawl but only sit in the wheelchair.
    Sometimes like for the baby feet of my daughter "normal" wide shoes for kids fit as well.
    Sandals that can be opened up fit pretty well.. you might need to put in some Velcro straps, but it works.
    But I liked Mason's crocodile shoes. :-)

    I hope the cast time won't be too tough for all of you.
    Maybe Mason can get a lying wheelchair for this time from the hospital.
    And I'm sure you can do enemas somehow... I mean, they wouldn't leave a child in the same diapers for 6 weeks ;-)
    I know that our orthopedic surgeons don't cast much anymore to avoid contractures.
    We only had casts on the feet/ankles and a removable part that went over the knee.
    Hip surgeries (which we haven't had yet) are put into individually fitted foam-blocks.
    However casting is still widely used by other clinics over here as well.

    Amaya has had AFOs since her foot surgeries last year.
    She used to wear them 24/7 and now only wears them by day.
    The can also be connected to the hip-part of her RGO so putting on the brace for standing and walking is not that much of a big deal.
    But as I said, every company makes different braces.

    Greetings from Germany

  3. I am a blog snooper. I have a special needs daughter who had a club foot and actually had the surgery similar to what your son will have. She was in a full leg cast for 6 weeks and then a walking cast for 3 weeks. She wears an AFO and the hospital where we get ours uses this company which is the same company referred to with the previous company. My daughter likes them.

    As far as shoes, my daughter gets hers at the hospital because she has to have a shoe lift put into hers. I heard Nordstroms will let you get a different size for each foot. They are kind of pricey so I haven't done that route. We have gotten some shoes at the store and I have to take her with me to have her try them on. Some brands do better, wider shoes help. A lot of times length is not an issue because they will trim the AFO with the edge of the toes, but your foot is wider with an AFO on.

    I hope this helps

    Sandra Cooper

  4. I have no advice, only good thoughts and prayers of encouragement to send your way. These must be overwhelming things to think about at times. A friend once pointed out to me that the promise about the windows of heaven opening also comes with the warning that you shall not have room enough to receive it (I'm obviously paraphrasing). This blessing of surgeries and casts and braces and the hope of standing walkers are almost too much to receive, aren't they?!? I can't offer you anything but my prayers, but you have them.

  5. Tristan,
    When Addie Mae and Chad wore AFO's, we used the "foldover" socks from Gymboree. I just looked them up on their website, and they do have a seem across the toe, but no where else. We just did not fold them over - we wore them pulled all the way up.
    We bought our shoes a half size longer than the AFO and always bought a wide. They worked well!
    From the cute little pivot I can see Eliza doing in her videos, I bet we will be doing something like this again. Hopefully very soon!!!
    I LOVED seeing the baby photos of Mason. Still praying for you!

  6. Praying for your whole family as always, Tristan. And while we don't have the same issues here so I am unsure as what advice to give you I will gladly ask my sister-in-law what shoes/socks she uses for my nephew since he has similar issues and braces with his feet (CP). I also have some wonderful patterns for seamless socks that I can make for Mason, however I know that they'd be too warm for summer and probably bulky for inside of shoes no matter how thin of a yarn/thread I used. With your permission I'll make some up for winter for him though for around the house or under his boots, just let me know if that's something you'd want and then I'll get his foot sizes from you in the late summer. :-) God bless your family!

  7. The seemless socks aren't really an issue since most socks today only have a seem on the toe. As long as the shoes aren't too tight, this doesn't matter. Nice thin socks from Old Navy work well for my kids in AFOs.

    It's the shoes that are a bear. I've gone the cheapo route and suggest you do too since Mason won't be walking on them. I find them as Walmrt and get whatever kind open up the most. Sometimes that means cutting off some decorative strapping. Tie shoes work best, but once in a while you can find some with long enough Velcro straps. Sometimes you have to cut along the sides of the tongue of the shoe if it won't open up enough. These shoes are generally cheap enough to get two pair in each size you need and toss the other pair. Pull out the inner sole before using them and that gets rid of the arch and give you more room for the braces. You'll find going up 2-3 sizes from his regular foot size generally will accommodate the braces. When you find a good pair, buy two because if he crawls on them a lot, he might wear them out fast.

  8. Hey Tristan. My son has been in some type of AFO his entire life. He has Spina Bifida. The best socks we have found our called SilverMax AFO liner socks. They have some anit bactierial stuff to help keep from getting athletes' foot, or any other type of fungus. They also have coolmax fiber to wick away moisture. He wears his AFO from the time he gets up until he goes to bed, so these socks have been a blessing for him. They also make AFO shoes that you can usually get from where you have the AFO made. They are normally not very pretty, but they work the best. The next best option we have found are New Balance shoes, they are typically made wider.


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