If you’ve been around us for 2 minutes you know that we’re pretty much obsessed with him.
In the midst of the questions we get about Spina Bifida in general, probably the most common questions I get asked is
“Will he ever walk?”
Let me tell ya, that’s a pretty loaded question. And to be honest, I can’t really say with confidence if Nehem will or won’t walk. I usually tell people that he probably will never walk unassisted. Which, based on his current abilities, strength, muscle tone, etc. that is the truth. We have always said that we won't decide what he can or cannot do, he will decide that. And he's proving that daily.
After answering that question I often get a look of pity. Which, I have to admit, is a little disheartening. We’re not looking for pity. Do I feel sad sometimes thinking that Nehem might struggle keeping up with his peers? Sure. Do I have “ I hate Spina Bifida” days? Yes. But please don’t feel sorry for or pity Nehem. He is amazing and if you spend 5 seconds with him you’ll pick up on that pretty quickly!
As I’ve mentioned before, the feeling in Nehem’s lower body is not great. From his hip to his knee, he has spotty sensation. If you tickle him with a little force he will usually react, and more so on the right side than the left. From the knee down, there is no sensation at all.
Let me pause here. We also hear quite often when we tell people about Nehem’s current sensation and abilities, that we serve a God of miracles. Which I fully believe and would never argue. If God chooses to give Nehem full sensation and movement one day, that would be amazing and there would be a lot of rejoicing in the Perry house. But strangely, that’s not our prayer. We already feel that God has given us a miracle. You can read more about that on our healing post here.
Anyway, while Nehem’s sensation is spotty, I am seeing his movement and control of his lower extremities improve literally by the day. It’s amazing to watch him compensate and learn how to get around. We’re actually in the process of making a baby proofed area of the house so that Shane can work during the day without worrying about what Nehem is getting into. I never thought we’d have to baby proof so early and I’m so grateful!
My point of this post is to introduce you to some amazing medical equipment that kids with Spina Bifida (or any other condition that may affect their ability to stand or walk) have available to them.
All of the people featured in the photos on this post have Spina Bifida and, yes, I have permission to use their photos. I am part of an amazing SB community!
Here’s a short clip of how Nehem gets around. Not a typical crawl but it totally works for him!
Our next goal will be to have him pulling up and eventually standing. Nehem wears Ankle Foot Orthosis (AFO’s) on his feet. Right now, the AFOs are a soft plastic material that are just helping keep his ankles at a right angle, as he tends to keep his toe in the pointed direction. This just helps keep his ankle loose so that when he is ready to try some weight bearing, his ankles are already at a 90 degree angle. Nehem will then transition into AFO’s that are harder plastic that will better support his weak ankles and legs.
Nehem wearing his AFOs and Nehem’s sweet friend Josiah are shown below. Josiah is a bit older than Nehem, so he wears hard plastic AFO’s. Aren’t these squishy babies the sweetest?
They also make Knee Ankle Foot Orthosis (KAFOs) so kiddos who may need some knee support as well.
Here is another one of Nehem’s friends, sweet Eliza, rocking her KAFO’s (as well as another piece of equipment I will talk about shortly)
Next, we will move on to a Stander. It does exactly what it’s name says it does. It is a piece of equipment that allows a child to be strapped into it where they can begin strengthening the muscles needed to stand. A Stander basically supports the weight of the child, while having their legs in the standing position.
This is Donovan who has been through so much with his bilateral club feet and is now being fitted for a stander! Amazing!
Next, we have a Gait Trainer. This is would be the equipment between a stander and a walker, where the kiddo still needs support but is ready to attempt taking some steps.
Check out this beauty in her Gait Trainer!
After a Gait Trainer, might come a walker. A walker allows the child to use their upper body strength to hold them self up while they use their lower body strength to get from Point A to Point B.
There was no way I could pick just one of those cutie pies!
We also have some sweeties that may just need a crutch or two to help keep them balanced! Amazing!
Look at this precious smile!
Occasionally, we have the kiddos who are able to walk independently! They may walk late, they may need an AFO or two. They may walk independently for short distances and need equipment for longer distances. Or they may just walk 100% independently!
Check out Carter! Carter walks, runs, plays ball and is just the absolute cutest! This kid is a walking miracle. Literally!
Finally, I want to talk about the wheelchair. I get the most pitiful looks when I talk about the high probability of Nehem requiring a wheelchair. And I get it. It’s sad to some people to think about a person spending their life in a Wheelchair. But the reality of it is that we're raising Nehem to be a successful, independent human. Think about it, wheelchairs allow people to get from one place to another, who wouldn’t be able to otherwise, on their own!
I don't really see anything pitiful about that.
Here are a few pictures of some awesome wheelie kiddos and a wheelie adult!
You
may notice that there are multiple pictures of the same children using
different equipment. Some kids use a walker or crutches for short
distances, but tire out quickly so they need a Wheelchair for the longer
distances, (such as Disney World!)
My prayer for Nehem is that he allows God to use him to bring His Name glory. I fully believe that can happen from a Wheelchair.
My goal is that Nehem feels independent. Whether that’s in a Wheelchair, with a walker, crutches or through divine intervention where God chooses to fully heal Nehem (because I'm not ruling that out). Independence is our goal.
Or maybe he'll just let me carry him forever. That'll be ok, too.
Or maybe he'll just let me carry him forever. That'll be ok, too.
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