Monday, August 4, 2014

What Tomorrow's Surgeries Are For, plus some cute everyday pictures


We're on the official countdown to Mason's 13th and 14th surgeries!  Tomorrow he will have both a heel cord release (tendon surgery) and a hip flexion abduction release (hip tendon surgery).  They are both on his right leg.  These surgeries are to correct the contractures that came about when his spinal cord was tethered and became symptomatic.  You can see some pictures from last March showing the Mason's hip and foot and the inability to straighten them into a flat or neutral position.  They look pretty much the same today on the right (the left foot got better after his spinal cord detethering surgery in March). 

I've been asked why we are pursuing these surgeries if Mason cannot bear weight on his legs and will never walk.  It's a great question!  There are several reasons but the short version is this:
  • For the foot:  Right now Mason cannot wear shoes because his foot is pointed like a ballerina.  Shoes aren't essential, though they are helpful in colder weather and for protection when he is crawling on rough surfaces.  However he also cannot wear his HKAFOs, the belly to foot length braces that enable him to stand upright and use his stander.  More on that next.
  • For the hip:  Mason is having some difficulty with climbing up the stairs, into his wheelchair from the floor, and transferring from the wheelchair to other places because his right leg won't straighten and isn't flexible in certain directions.  It also affects his balance and the way he sits, which can cause pressure sores.  Finally it prevents him from fitting his HKAFOs mentioned above.  The HKAFOs make it possible for Mason to use a stander with wheels similar to his wheelchair.  He has mobility at a different height, which is good developmentally, but more important standing applies pressure to his leg bones and strengthens them.  Without standing his bones become less dense, more brittle and prone to fractures or breaks. 
Life has been moving along pretty much as normal while we've been waiting, so I thought I would share some pictures with you of some fun or funny things Mason does.  Enjoy!

 
This is something Mason has been doing more.  His hip stretches easily one direction, as you can see, but tendons for stretching the other direction are the ones we're having surgery on tomorrow.  He laughs when he does this. 

 
While Mason is having more difficulty climbing because his stiff hip is in the way, he still finds a way to get where he wants to, including on top of things like this tub. 

Mason and Mommy are also starting to spend some time like this.  I'm wearing him in my Ergo Baby Carrier.  Why?  A few reasons, really.  First, it's great exercise for Mommy and I can always use that.

Second, we would like to do some outdoor adventures that are not wheelchair accessible in parts or the entire way (hiking, some caverns, etc).  To make that possible I need to be able to carry Mason long distances.  We're not there yet, but we're getting stronger together.

I hope to update here once we're home from the hospital in a few days.  It's finally time!

9 comments:

  1. You all are in my prayers tomorrow.

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  2. Prayers for Mason, the doctors and your family.

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  3. Love reading Mason's Blog, and I will say my prayers that all goes well!

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  4. Will be praying! Love the photos!!! Wish Eliza wouldn't pitch such a fit when I try to carry her in the Ergo!!
    Praying for you friend -

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  5. Prayers for Mason....I hope things went well today Tristan!

    The baby carrier is a great idea! I should start lugging Levi around to strengthen my body!

    Looking forward to your updates,
    Melissa

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  6. Laneah had a heel cord release as well. It was challenging while she. Recovered because the casts made her that much heavier. Love the Mason wearing. You look good. Can't believe u do all u do. Hoping things go well for him.

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  7. Also we have same shoe wearing issues so if u need suggestions can share what we do. Who knew shoes r a sign of normal life?

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  8. He is such a happy looking by. I hope all goes well.

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  9. I just saw your blog update on SCM and this post caught my eye because I am a huge Ergo/baby wearing fan! It also triggered a thought... I remember a while back seeing a post on Rachel Coleman's blog (the Signing Time lady) about carrying her daughter as she got older so she could experience life right along side them, even in places that weren't accessible by wheelchair. As Mason gets older, she might have some good ideas and information if needed. Just thought I would pass it along :)
    http://www.rachelcoleman.com/2011/08/10/baby-wearing-toddler-wearing-eleven-year-old-wearing/

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