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.

Sunday, November 11, 2012

Wheelchair Basketball Tournament

Caleb had his very first basketball tournament yesterday. It was at a local college, the same one we went to for wheelchair tennis and to watch the Movin' Mavs game. It was a very long, but very fun day.

Seriously, I could barely stand the cuteness of Caleb in his jersey.

Love it.

Practicing his dribbling skills. A very tough skill to master.

One of the highlights of the day for me was the opportunity to meet a fellow SB mom. I only "know" her online so it was a real treat to get to meet in person. They came down from Oklahoma to play our team in the tournament.
Casey was running some defense here. He did a great job of blocking Caleb.

Watching Casey and Caleb on the court was maybe the cutest thing I've ever seen.

Casey and Caleb.

The team all huddled up.

Caleb is one of the youngest on the team so the expectation for him isn't terribly high. The coach mostly expects the younger players to work on their defense game and block the opponents from getting to the goal. Caleb actually does a pretty good job at blocking. He is super quick with his chair. He did manage to get his hands on the ball once during a game but since he can't dribble yet the ref had the blow the whistle for "traveling". Caleb was so excited to get his hands on the ball and then looked so confused when the ref took it away! It was hysterical.

My mom took this photo. It's my favorite.

Benjamin did great during the games. I know it was a long day for him too.

Being silly. He's good at that.

Glenn would push Benjamin fast across the court. He loved it.

My boys.

Caleb is squeezing the life out of me in this photo!

It was so fun watching Caleb play basketball. He just seems so comfortable and confident out there. I was really proud of him.

Tuesday, November 06, 2012

1950's day

Today was "1950's Day" at Caleb's school. I swear his school has multiple dress-up days a year, you might recall "Fairy Tale Day" last week! At least 1950's attire is relatively easy. Just a fitted white shirt with some jeans and a black belt.

I did have the genius idea while in the shower yesterday morning to make Caleb's wheels look like records.


Sunday, November 04, 2012

Pumpkin Carvin' and Pumpkin Plantin'

Last week when I took the boys to the Pumpkin Patch, I bought the biggest pumpkin ever. Seriously the thing is huge. I had no choice, it was slim pickin's at the patch and the only pumpkins that were left were about 60 pounds each (it is possible that statement is a bit exaggerated...just know that the pumpkin is very heavy and very big). We didn't get around to carving our humongous pumpkin until Friday, a couple of day into November. Better late than never, right?

Seriously, HUGE pumpkin.

It's like 10 times the size of Caleb's head!

I was so proud of Caleb. Man that kid got right in there and started scooping the slime out.

Benjamin wouldn't touch the stuff.

 Our finished pumpkin
I think Benjamin was afraid the giant pumpkin was going to eat him or something. He looks kinda nervous.

My boys posing with the pumpkin.
Benjamin still looks nervous.

While we were carving the pumpkin and pulling out the guts, Caleb suggested we plant some of the seeds.
So we did. I gave the boys each a cup to plant their pumpkin seeds in.

Adding soil to his cup.

Planting our seeds. Maybe we'll grow a huge pumpkin of our own.

Friday, November 02, 2012

Fairy Tale Day: How to make a Dwarf!

Today was Fairy Tale dress-up day at Caleb's school. Caleb mentioned that his class had read "Snow White and the 7 dwarfs", so we decided a dwarf costume would be the way to go. Obviously I didn't want to spend money on a costume so I did a bit of research and found some ideas for making my own dwarf costume.  We decided Doc would be our dwarf of choice.

Here is how I did it:

I bought a cheap .98 cent Santa hat and cut off the fluffy white ball at the end.

I cut pieces of brown felt to fit on the hat and then I used iron-on adhesive to attach the felt.
If you sew you could totally make a felt hat without needing a Santa hat...but I don't sew.

It came out pretty cute.

For Doc's shirt I just took one of my old red t-shirts and turned it inside out.
For the back, I ironed on the "DOC" letters just because I happened to have some.

For the front, I ironed on some felt circles to represent the buttons.

Now for the beard. I knew Caleb wouldn't want something actually attached to his face so I had the idea of using his glasses to "hold" the beard. I just cut the beard out of white felt and attached it to his glasses.

 And here is the finished product.
Not too bad for only $1.50
(.98 cent Santa hat and a few pieces of brown felt. I had all the other supplies already)

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