Ahh, the joys of fitting orthotics! Four hours out of the house and yet we still came home empty handed. Mason’s Hip Knee Ankle Foot Orthotics(HKAFO) were ready so this afternoon Emma, Mason, and Mommy drove 50 minutes to the office for fitting. It was Mason’s first long ride in his forward facing car seat – because he is a big one year old boy – and he loved it. He sits higher up so he can see out the windows and it is easier to play with a seatmate. Emma was elected the buddy today so she got to come along. For many of Mason’s appointments in the big city I take one of the older siblings along to play with Mason and get some mommy time. 
I had no idea just how long the process was going to be today. I thought we would show up, strap him in the braces, maybe adjust a bit of padding, and head home. In reality we were in the office for hours. You see, when you arrive for a fitting the HKAFOs still need some work. The plastic part for his feet is called the AFO. Those were not attached to the metal of the brace because we have to put Mason into the brace and get them to the exact length needed to fit him. (Ours were supposed to be decorated and weren’t. That’s going to be fixed because part of the plastic is also too thin for the support is has to do for Mason.)
Then the orthotist decided to added metal, leather, and velcro strapping around his thighs. These were custom made and riveted on while we waited (and waited….and waited…). 
After nearly 1 1/2 hours of work we were able to put Mason in the brace and stand him up. He hated it. 
But we are pretty sure we know why. See that leather and velcro belt around his belly? 
Well, when you turn around to see the back there is a metal band running behind his back with the rest of the leather belt. It happens to run right across this: 
Yes, that is Mason’s scar from where his spinal cord was sticking out of his back at birth. It has healed well but happens to be super sensitive to touch and pressure and the metal band was putting a lot of pressure right on the scar when he stood. Bad News!
We also discovered that Mason needs more support for his butt. In the braces the way they are his bum sticks out a bit like he’s getting ready to sit. His extensor muscles in his hips don’t work to help him tuck his butt under him to stand. We needed to adapt the bracing to include something to hold his bum in place.
We decided to go with a different back, one custom fit out of plastic similar to the AFOs. It will run from under his shoulder blades down his back and butt. This will spread the pressure out away from his scar at the same time that it supports his butt staying tucked. To make that piece we had to make a cast of Mason’s abdomen and back from chest to hips. We did that today too. It’s a messy process and Mason was not impressed. They will use that to make a mold for the back plate Mason needs.
Of course all of that work means we had to leave the HKAFOs with the orthotist today. He’ll get all our custom parts ready and we’ll come back for a fitting in a few weeks. Hopefully we’ll get to bring the braces home next time!
Wow! That is quite a process! Praying that you get to take them home next time! What a trooper!
ReplyDeleteThere is so much more involved in this than I thought! Hopefully next time they are comfy for Mason and he can take them home!
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So close! Can't wait to see the final outcome.
ReplyDeleteThis may seem like a silly question. Do the doctor's think Mason might be able to walk someday? Or are all S.B. wheel-chair bound?
ReplyDeleteRebecca - that is not a silly question at all! SB has a huge variety in walking ability because each child has different nerves affected based partially on where their spine was open. Generally the lower the opening on the spine the fewer nerves a child has damaged. Some will walk with no assistance, others may need AFOs and crutches or a walker. Some will be able to walk with KAFOs up to their knees and a walker. Some will have one leg weaker than the other. Some will only walk as a child, but as the grow up the energy it takes to walk will exhaust them so they will switch to wheels for longer distances or all the time. Some will only walk for physical therapy benefits, but never walk in regular, daily activity. And others will never even do that much.
ReplyDeleteMason's nerve damage is extensive compared to a lot of SB cases. He will not be able to walk even for physical therapy we believe. There are a few reasons. First, he has no feeling in his legs at all that we can tell (or his butt, lower back, and lower abdomen). He has a tiny bit of voluntary muscle use in his legs - he can pull legs up at the hip. He cannot straighten his legs back out, so the other half of that muscle pair is not getting any nerve impulses. We also see a very marked difference even between his left and right leg in pulling up at the hip, with the right stronger than the left by a lot.
All that to say he simply can't get his muscles to do what he wants in his legs, and only one little thing in his hips. We are very grateful for what he can do in his hips however - with that simple pulling up he has been able to learn to roll over. You see, he has to pull up and use his abs to swing his entire leg over his body. Without the hip movement it would be much harder to even roll over.
Rebecca- SB is different in all cases. I have SB and I wear AFO's and use forearm crutches. I used a walker until I was 9 when I switched to fore arm crutches. I am 23 years old now and am in law school.
ReplyDeleteI found Mason's story last night. Thank you for sharing him wit everyone, he is such a cute little guy!
ReplyDeleteI am learnign quite a bit about SB from you amd thank you for that.
I do have one question, not about SB. Have you heard of extended rear facing? My daughter turned two in November and still rides rear facing, as it is much safer in the even of a collision. If you haven't heard of it or looked into it at all, look up carseat.org as they have a lot of great information.
I'm sorry the orthotics weren't ready today, that stinks.
My daughter has spina bifida she got casted for her braces a few weeks ago hopefully they will be in soon!!! It amazes me how strong they are, may god bless you and your little one and the rest of your family ♡♡♥♥
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