Tethered Cord Surgery...One year later

Wow. Has it really been a year already? I just need to let that soak in a bit. It has not been an easy year, and the truth is that Caleb is not where I expected him to be. I never dreamed we would be a year out from surgery and he still wouldn't have gained back the function he had prior to surgery. That stings a bit...it's been stinging for a year now.

I remember sitting down with Caleb a couple of days before he was scheduled to have surgery. I explained to him the reasons he needed surgery and I promised that the surgery would help him. I told him that the surgery would help him walk better. I feel like I mislead him.

I didn't know he would have to start all over. I didn't know that he would lose everything that he had worked so hard to gain. I wasn't prepared for that. I didn't prepare him for that.

I just told him what everyone had told me. I was told that the recovery would take weeks, not months, and certainly not a year. I wish I had been better prepared for what could be. I wish someone had told me, had prepared me, so that I could have done a better job at preparing him.

Despite the fact that we had to start at the bottom of the mountain, despite the fact that we have already climbed this mountain before, Caleb has been a trooper. He always has been. He has pushed through physical therapy 3 times a week. Every week, for the past year.

He works hard. He may not be where he was and he may not ever gain back the function he had. But let me tell you, it isn't for lack of trying. He has given everything he has. I am in awe of him.

(he's a fantastic speller by the way)

Yep, that about sums him up.

Caleb walking

It has been almost a year since Caleb's tethered cord surgery, almost a year since I have seen him walk. Thanks to the knee immobilizers, he is walking. Just a little bit at a time, but he is able to walk.

I know many of you saw this on facebook already but for those of you that haven't....

I think I am more excited than he is. He told me today that "walking is boring". I guess it is boring to him because I've just had him walk around the living room with no purpose. Plus walking is slow and it is hard work. Hopefully he'll feel encouraged as his legs get stronger and his endurance increases. I'm just thrilled to see him upright. I don't think I realized how tall he was until I couple of days ago. He has definitely grown in the last year.

Knee Immobilizers

A few weeks ago I came to the conclusion that Caleb needs more support to walk. He has worked so hard since his tethered cord surgery last April (seriously, I can't believe its almost been a year already). He has given it all he has but AFO's just aren't enough to support his legs for walking. At least not right now. Today he had an appointment with his orthopedic doctor to talk about our options for getting Caleb up and walking a bit.

Playing video games in the waiting room. He was playing some game with a skateboarding wolf. He loved it. I had to pry him away when they called us back.

Doing what I call "wheelie spins". He does a wheelie and then spins really fast in a circle while maintaining the wheelie.

He spins crazy fast!

Anyway, back to the ortho appointment. I had every intention of getting him fitted for KAFO's today because I am certain he will be able to walk if he just has more support in the knees. The doctor had a different suggestion...knee immobilizers. I have heard of these and our friend's son with SB walks pretty well with them. The argument for the knee immobilizers instead of KAFO's is that the immobilizers are lighter so they won't add extra weight to Caleb's legs making it harder for him to walk. They want to see how Caleb does with the knee immobilizers first. If he does well with them, then we go back and get fitted for KAFO's. It seemed like a fair compromise so I agreed.

I don't really know how to describe them. Basically the immobilizers wrap around his leg, offering support and stability. You can fit them tight for more support or loosen them for less. Pretty basic design and easy to put on. He can't bend his legs at all in them so these can only be used when we are specifically working on standing or walking. He can't really get around on the floor with these on.

They worked great. Caleb has been dependent on his arms to hold all his weight when he tries to use his walker. He will complain that his "arms are getting tired" because he uses them to hold up his weight. These immobilizers almost forced him to put pressure through his legs and feet.

I know the immobilizers were working because after walking around a bit, Caleb complained that his "legs were getting tired." That was the first time I have heard him say his legs were tired. That means he was actually using his legs and not relying so much on his arms. That's a good thing.

I think the immobilizers will force him to put pressure through those feet and legs. I think he will start using muscles he hasn't really been using. I'm excited. I think he was pretty excited too. Man, that kid works so hard. Love that booger.

Recent happenings

Things have been pretty quiet around here this past week. The boys started back at school so it has been an adjustment getting back into the routine after 2 weeks off. Caleb was excited to be going back to school...Benjamin, not so much. Benjamin just doesn't like being separated from me and school (even though it is only for 5 hours, two days a week) means separation from mommy.

Caleb had an exciting event happen yesterday before school. He lost tooth #7!

Posing.

I'll go ahead and give a quick Caleb update. It's been over 10 months since his tethered cord surgery. April 3rd will be one year. I can't believe it's been almost a year since the surgery. In some ways the time has gone by so quickly, even though the progress has been so slow. Yesterday he came home from school, crawled over to his walker, managed to get to standing, and he tried to walk. He took about 2 steps before his knees just buckled and he fell to the floor. I hate that he wants to walk, but his body just won't let him. And he has worked so hard the past 10 months. Physical therapy 3 times a week folks, the boy works hard. More than being a hard worker, he is a trooper. He takes it all in stride. He keeps smiling even when he is struggling. He amazes me. After watching him fall yesterday when trying to walk, I decided that he needs higher bracing. His hips are so strong, maybe the strongest I have ever seen, but those knees just need more support. I know he could walk with KAFO's. So after discussing it with his therapist, we both agreed that KAFO's would be a good idea. It doesn't mean that we give up on him getting back to where he was prior to the surgery. I don't know if he'll ever get back the function he had. I just want to give him the option of walking. Right now that isn't an option. So, I'm waiting to hear back from ortho to get an appointment scheduled. Hopefully we can get him fitted for some KAFO's within the next few weeks, and get my boy walking again.

And just because he's cute, here are a couple of pictures I took of Benjamin today. We were doing a bit of shopping at "Hobby Lobby" and he was being a bit silly.

I love that he still likes to ride in the cart even though he is getting too big for it.

Love this kid.

Year In Review

I thought it would be fun to do a quick (yeah right!) summary of the past year. 

January

The year started with some fantastic family photos. Seriously, just gorgeous.

February

We took Caleb to his first wheelchair basketball practice...he was instantly hooked.

March

(This was a busy month, a lot happened during this time.)

We took a trip to San Antonio.

Benjamin said "good bye" to his burp cloth.

And we learned that Caleb's spinal cord was tethered and surgery was scheduled.

April

Caleb had tethered cord surgery.

(That pretty much consumed April)

May

Caleb got to meet Wheelz. Very cool.

And I had a "mommy tantrum".

June

It was the summer of crafting at our house!

It was also the summer of the Slip'n Slide!

I ended the month with some Deja Vu

July

I went to the SB Conference. It was amazing! These women are amazing!

We got ready for the Olympics.

August

Caleb turned 7....I'm still trying to wrap my brain around that!

Caleb started 1st grade.

Bond between Brothers

September

With your help we raised $1335 for the SBANT!

Benjamin got up close and personal with a fire truck.

Benjamin started preschool, just 2 days a week.

October

(an exceptionally crazy month)

The month started off with a "Rough Few Days"...and that's putting it lightly.

Benjamin photo shoot at the park.

We celebrated a Shuntiversary.

Awesome Cardboard Creations.

Pumpkin Patch fun.

November

Caleb had his first basketball tournament.

Spina Bifida Family Camp.

December

Our ADVENTure began.

Oklahoma Basketball Tournament.

A lesson in "Sibling Love"?

My baby turned 4. Unbearable to believe he is already 4.

I think that about sums up our year, well the highlights anyway. Thanks for sharing this journey with us!

"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.

Resting.

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.