Wednesday, November 14, 2012

"So, how's Caleb doing?"

I get asked that question quite a bit, especially since his tethered cord surgery in April. The short answer is: "He's good". (If that's all you need to hear, you can stop reading now. If you want a more detailed answer, then keep reading)

Does that mean he is back to where he was prior to surgery? No.

Is he close? I don't know.

Will he ever regain the function he had? Don't know that either.

I do know that he is making progress, it is very slow progress and it comes with a lot of hard work and intensive therapy. Ms. Vicki comes 3 times a week and she works Caleb very hard. It is difficult for me to watch him struggle during therapy and sometimes I just want to rush in and grab him up. I know doing that would only hinder his progress so I just continue to cheer him on. I still can't believe it has been over 7 months since his surgery. I almost want to laugh at myself for thinking that he would bounce back from spinal cord surgery within a few weeks. But seriously, I truly thought that it would take weeks, not months and months, for him to regain the function he had before the surgery. It's still hard to believe that he went from walking really well with just AFO's and his walker to losing everything from the waist down. Caleb truly had to start all over. It has been incredibly painful to watch but it is a journey that we are familiar with. We've climbed this mountain before.  And we are doing it again. Honestly, I have peace about it now. I don't like that it is taking so long for him to regain function but I'm thankful for the progress being made. I'm thankful for his willingness to work hard in PT even when he is tired from being at school all day.

Regaining strength in those legs has been so tough.

He uses his arms to hold most of his weight.

The see-saw makes a great therapy tool.
He is working so hard to put weight on those little legs.

Squatting down.

And pushing back up. I think the bulging vein in his neck is proof that this kid is working hard.

This kid gives it everything he has. He works harder than any person I have ever seen. And he's 7.

 After working out those legs, it's time to have a seat on the swing. I love that we can use a swing, which is so much fun for Caleb and it works his core and balance at the same time.

He got the giggles while swinging.

Here comes the silliness.

If this picture could play sound you would hear Caleb laughing.

Big belly laugh right here. Seriously, this kid has the best laugh.

Mr. Serious.

Benjamin plays outside while Caleb works hard.
"Hey mom, is this safe?"

One of the interesting things that has happened since Caleb's TC surgery is that he is actually stronger in some areas. He has strength and movement in places that he never had before, not even before TC surgery. One of the first things we noticed after the surgery was Caleb had new, intentional movement in his foot. He can "tap" both feet, actually isolating movement in the foot from the ankle. Now what that means in the long run, I don't know. The ability to move the feet at the ankle could mean that hinged AFO's might work for him at some point. Hinged AFO's allow the ankle and foot to move while walking, something that traditional AFO's don't allow. So, we'll see. He can also kick his leg out from the knee. He couldn't do that before the surgery. So while he lost so much function from the surgery, he gained some new things that he never had before. Those spinal nerves are tricky little things.
He does better at getting on is knees now. This is called "tall kneeling". 

Before the surgery, Caleb could maintain this position just long enough to get in his walker or climb on the couch. He couldn't stay on his knees, his hips and glutes just didn't have the strength. It has taken a lot of work and practice but Caleb can now hold the tall kneel position a really, really long time. That may not seem like a big deal but you need good hip strength to walk. Walking is far more than just legs, your core and your hips have to be strong and stable first. We have spent a lot of time over the last 7 months working Caleb's core with sit-ups and bridges.

Getting into a tall kneel position.

Half-kneel position.

This is a tough one for Caleb. It requires a lot of balance to get up on his knees and kick one foot out away from the body. We've been working on this quite a bit with him. The goal is for Caleb to use his legs to climb on a chair or on the couch and not rely so much on his arms.

He made it!

I swear he has grown 6 inches in the last few months. It's been so long since I've seen him stand up that when I finally see him upright, he looks like a giant. This picture is a bit deceiving because it looks like Caleb is standing up. And he is, sorta. He is supporting a lot of his weight in his arms and not letting his legs do the work. We are trying to break his habit of letting his arms do the work. 

While I'm not happy with the amount of time it has taken to regain strength, I'm happy that he is in fact gaining strength. There is progress, albeit painfully slow progress...but it's still progress. Ms. Vicki is very optimistic that Caleb will regain all that he lost and then some, but she is also realistic and recognizes that it will continue to take time. So we wait, while he works. We rejoice in and celebrate each new skill mastered.

Now one thing I don't like at all is that Caleb has started having headaches again. The year prior to TC surgery, Caleb was having 2-3 headaches a week. After TC surgery, not a single headache for over 6 months. Not one headache. Unfortunately, his headaches are coming back. I would say he has had 5 headaches in the last month. They are brief and go away on their own but they are the exact same headaches he was having prior to surgery. They are always on the right side of his forehead. So, I'm not sure what to make of it. I don't think it is the shunt. And I don't necessarily think his cord is tethered again, I'll throw up if that's the case. When he had his MRI before the surgery, neuro commented on the fact that Caleb had a lot of spinal fluid built up at the base of his cord, where it was tethered. The fluid was released with the surgery. My concern is these headaches could mean that there is fluid building at the base of the spinal cord. I'm just guessing. The only way to prove that would be an MRI. I don't think we are at the point of needing to schedule an MRI but I'm back to making note of each headache so we can see how frequent they are. Time will tell.

So for those of you that managed to read all of the above, that is the really long answer to the question: "So, how's Caleb doing?"

Man, this kid inspires me. He works so hard. He works hard at school all day long. After school he gets about a 10 minute break before Ms. Vicki comes and then he gives her a 110% for therapy. And I know he is tired. I know there are days that he doesn't want to work. But he does it anyway. I know there are times when he wonders why he has to work so hard. I know he gets frustrated. But he pushes on. He keeps going. He is amazing. We should all be more like Caleb.


Jen said...

great update! and yes, I read it all. Caleb is amazing for sure! I know it's slow. But he is doing awesome. I am still totally amazed by the foot thing too! I'd say it took Owen a year to be back to his pre-surgery stamina/strength—though it was with higher bracing. He lost some function, but with the appropriate support he was able to do what he wanted to do. I am praying the same will be true for Caleb!!!

Lisa @ Heaven Sent said...

Thank you for this great update on Caleb. I love all the details! What a hard little worker you have there. Praising God for foot movement! That is just amazing.

And these words are gold by the way:
"So we wait, while he works. We rejoice in and celebrate each new skill mastered."

SB is certainly a waiting game, but our rock stars prove every time that it is always worth it. Hang in there, Mama. You, too, are strong!

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