Showing posts with label Physical Therapy. Show all posts
Showing posts with label Physical Therapy. Show all posts

Thursday, December 19, 2013

Crazy bounce house fun!

We rented a bounce house slide for Benjamin's super awesome Lego Star Wars party last weekend. The company we rented from is a local, family-owned business. They had to go out of town unexpectedly over the weekend so we got to keep the bounce house for 5 days! The boys were thrilled to have a bounce house in their backyard for almost the entire week. AND we were blessed with some crazy nice weather too. We have been having some major bounce house fun.

Caleb worked so hard to tackle this massive 12 foot ladder.

He could get about halfway on his own before he couldn't go any further and I would have to step in and help him the rest of the way. Watching him try so hard but not succeed is frustrating. I'm thankful that he works so hard but I'm also kinda ticked that he has to work so hard. 

And then I see him with all smiles. This kid is having fun.

You're never to old to go down a bounce house slide with your momma.

Airborne Benjamin. He could not get enough of this thing.

Ms. Vicki (our wonderful PT) even found a way to use the bounce house in therapy.

Silly boys. They had such a ball this week. Who doesn't love a bounce house in their backyard?

Working on that core strength! 
Hmmm...I wonder if I could get insurance to cover the cost of our own bounce house. It's for therapy right?

Monday, September 30, 2013

Meeting R2D2

Caleb has the best PT in the world. She knew the boys (mostly Benjamin) have a new found love of all things Star Wars and R2D2 is Benjamin's favorite character. Ms. Vicki got her hands on a real R2D2 (mini-size of course) and brought him for one of her visits with Caleb. The boys (mostly Benjamin) were besides themselves over it.

He smiled almost the entire time.

R2D2 got lots and lots of hugs. I even heard "I love you" a couple of times.

Absolute wonder. This may be my most favorite picture ever.

He couldn't get enough of this little droid.

Caleb wasn't quite as enamored as Benjamin was...he did however, enjoy standing next to R2D2.

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.

Thursday, August 23, 2012

Progress Indeed

Standing yesterday...taking STEPS today!

I have no words right now. I just can't believe it. This kid has been holding out on me or something!

Wow, just wow.

Wednesday, August 22, 2012

Progress: The view looks pretty good from here

Caleb has made significant progress in the last couple of weeks. Significant. Progress that came at just the right time. I had been feeling like we were losing so much ground because of his swollen knee (that whole thing is still a mystery even after 2 x-rays and blood work. Oh and the knee is still swollen, although it is better). He took it easy in therapy for several weeks because we were so worried that we would do more damage to the knee. I was so frustrated during that time. I had psyched myself up to climb the mountain again, only to be sidelined because of the knee. I have felt absolutely panicked because Caleb starts school next Monday and he was still lacking in strength. I kept wondering if we were pushing him to do things that he just couldn't do, and may never do again. We've (or he's) been working so hard the last couple of weeks. And as a result of all that hard work, there is progress.  All of a sudden his sit-ups are better and his bridges are higher.  He is getting up to a tall-knee position.  He is climbing up on the couch. All of a sudden he is getting stronger, and I can see it. 
And today this:
Standing up.

This is the first time I have seen him stand up since April 2nd, the day before his tethered cord surgery.

Over 4 1/2 months since I've seen him hold his own weight with his legs.
4 1/2 months.

He obviously has a long way to go to get back to where he was pre-TC but I see the possibility now. A possibility that I didn't see a month ago. I'm just so glad to see his hard work paying off. I know he has felt discouraged too. Who wouldn't? He sees the progress he is making and I see him gaining confidence and pushing himself. It is still a long way up the mountain but I feel like I just caught a glimpse of what is to come.

The view looks pretty good from where I sit right now.

It was definitely a good day for this momma.

Now having said that...if I'm ever told that he needs TC surgery again, we will promptly pack our bags and move to a tropical island, where we will put our heads in the sand like an ostrich and pretend we never heard the words "tethered cord". 

Wednesday, June 27, 2012

Deja Vu

Have you ever had your own words come back and bite you?  Maybe that isn't the best way to put it.  I don't know if my words are coming back to bite me or if I am being forced to take my own advice.  Either way I don't like it.  One of my favorite blog posts was titled "Taking the Scenic Route".  In that post I make an attempt to encourage all the fellow SB parents out there that are struggling with their child's progress or lack thereof.  I have always felt an obligation to share Caleb's journey and how hard he has worked to meet milestones.  I have also shared how I felt over the years watching him struggle to meet those major milestones (sitting, crawling, standing, walking).  I compared the journey to climbing a mountain and I expressed the importance of enjoying the scenery and taking in every single milestone with joy.

Well, I have found myself with Caleb at the bottom of that same mountain. Again.  It has been 12 weeks since Caleb's tethered cord surgery and he still can't stand up.  He is a miles away from being able to walk.  He can't climb up on the couch by himself because his legs just can't hold him.  I don't say all of that to sound negative.  I'm just stating the facts.  I will admit to feeling very down in recent weeks.  I never dreamed that we would be 3 months out from surgery and Caleb would still have so much ground to cover.  So, here we are, at the bottom of this mountain that we have already climbed.  I'm looking up at this giant mountain and I'm thinking: "Um, we've already been here.  We've climbed this one before.  It took us years to make it to the top of this stupid mountain and we don't want to climb it again.  We have already passed by all the scenery this mountain has to offer, we don't want to see it again."

And yet, here we are.

It appears we have 2 choices: One, we could just refuse to climb this mountain.  We could wave the white flag in surrender.  Two, we could strap on our mountain-climbing gear and tackle this mountain all over again.  I admit to embracing choice number one for a couple of weeks.  We had a lull in physical therapy while Ms. Vicki changed companies and I was struggling during that time.  I just wasn't seeing any progress and I was beat down.  Caleb seemed frustrated as well and I was at a loss of how to motivate him.  I just kept thinking that I was pushing him to do things that he will never be able to do again.  I had convinced myself that he will  never walk again.  Then it occurred to me that there was a time when I never thought Caleb would walk in the first place.  I never dreamed that he would walk with just AFO's and a walker.  I never expected to see him make that kind of progress.  But he did it.  It took years.  It took a lot of work and a lot of therapy, but he did it.  So, I've decided that if he did it once then, just maybe, he can do it again.  
So, we work on getting those legs strong again.  We give him as much support as he needs until those legs can hold him up.

We work on getting those hips strong by doing tall kneeling.

We work out the core muscles to get his trunk stable again.

We make it fun (or try to).

We do bridges. And sit-ups.

We work the inner thigh muscles.

We get those legs used to standing again.  We make those legs remember what it feels like to stand up.

We work hard. 
I should say HE works hard, I'm just his cheerleader.

And the boy does work hard.  He is getting therapy 3 times a week and Ms. Vicki doesn't mess around.  She makes him work.  And she encourages me.  She is so optimistic about his recovery.  She fully believes that he will gain back the function he had.  She sees him getting stronger, even when I don't.  I don't know how long it will take him to gain back all that was lost.  It took him years to get to where he was.  I'm hoping we are dealing with months and not years but regardless, we will press on.

People like to say that everything happens for a reason.  Now, I'm not sure if every single trial we face in life is for some specific purpose but I do believe that God can work out every situation for good.  And we can use our trials to encourage others.

So, I read my own words from "Taking the Scenic Route":

"Don't let yourself drown in the milestones. Don't let each goal not yet reached consume you. Your little one will climb that mountain, just maybe not as fast as you would like. So, take the time to enjoy the scenic route up the mountain, and anticipate the beauty and the joy that awaits at the top."

I don't necessarily want to hike up this mountain again but because I have accompanied Caleb on this journey before, I know the joy that awaits us.  I know what it is like to rejoice in the progress made.  I know what it is like to watch my son push himself and work harder than anyone I have ever seen in my life.  I know the pride he feels when he reaches a goal.  I know the look on his face.  I know he wants to stand up again.  I know he wants to walk again.  So, we climb.  I'll join him on this journey, offering all the support and love I can.  And I will praise God that I have the privilege of being Caleb's mom.

Friday, April 20, 2012

Stir Crazy Caleb

Stir crazy (condition)

(emphasis added by me, indicates the "stir crazy" behaviors seen in Caleb)

Stir crazy is a phrase that dates to 1908 according to the Oxford English Dictionary[1] and the online Etymology Dictionary. Used among inmates in prison, it referred to a prisoner who became mentally unbalanced because of prolonged incarceration. It is based upon the slang stir (1851) to mean prison. It is now used to refer to anyone who becomes restless or anxious from feeling trapped and even somewhat claustrophobic in an environment, usually a confined space, perceived to be more static and unengaging than can any longer continue to hold interest, meaning, and value to and for them. 'Stir crazy' could be classified as a more specific form of boredom, but combined with elevated and often increasing levels of anxiety, frustration, agitation, figeting, manic depressive type mood swings, and accessory episodes of acting out violently or otherwise antisocially on those feelings, the longer the unengaging non-stimulating environment is persisted in. 'Stir crazy' has a similar meaning to cabin fever, except minus the urge to disengage and sleep more, plus the urge to engage and attempt doing anything perceived to be even slightly more constructive and productive, given the extreme limitations of the environment, even if plainly destructive, than doing nothing at all. Prisoners will sometimes initiate otherwise easily avoidable conflict for no other reason than they perceive they have nothing else better or more worth while to do.(this translates into more frequent fighting between Caleb and Benjamin)

 Stir crazy might colloquially be defined as finding yourself trapped in a waiting room without any apparent appointment time scheduled.

So, that just about sums up Caleb and his attitude right now (and let's face it, it describes my attitude too).  Caleb goes from being emotional, wanting 16 hugs in a row, telling me how pretty I being sassy, defiant, belligerent, and downright grumpy.  I have found myself getting frustrated with him and his "stir crazy" attitude and then I have to remind myself what he has been through the last 2 1/2 weeks.  He is sick of being home.  He is sick of me asking him to lie down (he pretty much refuses at this point).  He misses school.  He misses his friends.  He wants to go to church.  He longs for his independence and freedom.  He is having to rely on me so much because he hasn't gained back the function he had prior to the surgery.  He can't get himself up to the table, he can't climb up on his bed, he can't walk into the next room, he can't climb his steps to brush his teeth, he can't get into the car by himself.  There are just so many things that he can't do right now, things that he was used to doing.  He is having to work so hard in physical therapy.  I was watching him just struggle to get into a tall-kneeling position today with Ms. Vicki.  It was so hard for him.  He has just lost so much strength and function.  He is gaining it back but it seems like such a long road and the kidney infection really set him back a bit.  Thankfully he is on the mend from the the infection and we are able to move forward with his recovery.

I'm not trying to complain or focus on the negative. While the last couple of weeks have been tough, I'm still very thankful:
*For how well Caleb's incision has healed.  We have not had a single issue with the incision.
*For the ability to be home with him during this time.
*For all the wonderful love and support we have received from friends and family.
*For all the notes, cards, gifts, and visits that Caleb has received.  I think we have had more visitors to our house in the last 2 weeks than we have had in the 8 1/2 years we've lived here!
*For all the prayers.  It is amazing to me that so many of you have never met Caleb, or me, but you love him and you prayed for him.  That just gets me all teary-eyed.

Okay, time for a few pictures:
We have had gorgeous weather this week so I have taken Caleb outside to soak up some Vitamin D and hopefully improve some of his "stir crazy" emotions (and mine too).

Benjamin had school a couple of days this week so Caleb had me all to himself.  We had a picnic lunch in the backyard yesterday.

With his kidney infection, Caleb has had access to more juice than usual.  I don't buy juice often but I needed to make sure he was drinking enough fluids. 
 (I was not given any monetary compensation from CapriSun-although I should have)

Being his silly self.  See, a little bit of sun did help his mood a bit.

Ah, love the toothless smile.

Blowing bubbles

I love this picture of Benjamin.  He was all hot and sweaty from running around like a lunatic in the backyard. His face was flushed and he had tiny sweat droplets on his forehead.  And I'm pretty sure that is a giant river of snot pouring out of his nose.  Awesome.

Caleb has been working hard for Ms. Vicki this week.  Here is picture of him sorta standing up.  She was offering quite a bit of support but he was able to put some weight on his legs, so that is an improvement.
Smilin' even when he is working hard.

Picnics in the sun and blowing bubbles can momentarily help with "stir crazy" behaviors but I think going back to school will be the cure for grumpy-pants Caleb.  So, I've decided to let him go back to school on Monday for just a few hours in the morning.  I'll likely keep him going a half-day until we have our follow-up appointment on May 1st.  I think Caleb will do fine with just 3 hours of school.  I think just being out of the house and spending time with his friends will do wonders for his current condition of stir craziness.  And just maybe, it will benefit my mental health as well.  :)

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