Sledding With CP... A Lesson In Not Limiting Independence

Andrew wants to be independent in just about everything he does. Even though he doesn't walk without assistance, he can crawl up stairs, climb on chairs and counters to access things, independently take a shower, play on playgrounds including inflatable bounce houses and slides, get his own drink, get dressed by himself... the list goes on and on. There are limits to what he can do independently because of his cerebral palsy, but he is constantly pushing the boundaries so he can do more. He wants complete independence with a type of fierceness that I have not witnessed before.

We recently had a snow day. Here in the south, they are few and far between and it is an exciting time for my kids (and the grown-ups too). We have snow pants, boots, gloves and sleds even though we only use them for a day or two every year. You would think that Andrew's  mobility issues would limit him tremendously in the snow. Although he cannot use his walker or wheelchair, he CAN crawl and has always done so during snow play so that he can have that independence.

Crawling through the snow toward the top of a small hill.
His brother decided to crawl with him.

Because of his direct contact with the cold, I make sure he has higher quality snow pants, boots that cinch tightly around his feet, snow gloves that fit well and cinch around his wrists, and layer him up like crazy. He is usually the first to want to go outside to play, but is also the first to want to go inside because he gets cold quickly. However, with his determination and a little creative thinking on my part, he is still able to be like any other kid and do the things in the snow that HE wants to do without Mommy or Daddy carrying him around.

Andrew, age 4, building a snowman with his brother.

Before this year, sledding was something he could not do on his own. It was virtually impossible for him to drag a sled up the hill while covered in snow and ice, get on it, and get it going. However, our other two kids couldn't quite do it independently either, so it didn't really matter for him that we put him on the sled and dragged him up the hill and then got him going. He still got to sled and participate with everyone else. That's what mattered to him.

Daddy and Mommy have spent countless hours dragging kids up hills on sleds.

This year, however, both of my other children figured out how to get the sleds going by themselves and were perfectly capable of dragging them up hills. So, Andrew decided that he was going to be independent with it as well. As much as the mom in me was thinking of all of the difficulties and "impossibilities" that he was likely to face, I remained supportive and allowed him to try. He was able to put the rope in his hand and drag the sled up the smaller hills while crawling. This impressed me, but not nearly as much as when he got his slippery, snow and ice covered self onto the plastic sled, and then used his arms to get himself going. He soon learned that he needed to position himself to the back of the sled instead of the front, but he basically spent all of the snow day sledding down the hills on his own. It was a little bittersweet for Mommy that day since I no longer had to help my kids in the snow and could just sit, watch and take pictures. But, then, I grabbed a sled and joined in on the fun.

Andrew's first attempt at setting himself up on the sled and getting it going on his own.

Andrew has taught me to not limit his independence by pre-conceived notion of his abilities. He can and will achieve anything, even if it means that he has to do it a little differently than most kid.

Side By Side Comparison-Week 3 to Week 13

They say a picture says a 1,000 words. That must mean that a video says 1,000,000. I couldn't help but notice that I have similar pictures and videos of Andrew that I took at 2-3 weeks post-SDR and 12-13 weeks post-SDR. What a difference 10 weeks makes! Plus, I can't believe how much bigger and stronger he has gotten in the last couple of months.

Standing and reaching at 3 weeks.

Standing and reaching at 13 weeks.

He obviously needs a lot less support in the second picture than in the first. Plus, his reach is so much higher and he is soooo much taller. I know the perspective of the picture is different in each, but look at where the bar of the walker hits him on his body. 

Then, there is his walking. We often use going to the mall or the toy section at the store as a way to encourage walking. It's motivating to him. Watch the video of him walking at the mall 2 weeks after his SDR surgery. 

Now, watch him RUNNING through Target on the second video at 13 weeks post-SDR. He is far less wobbly in the second picture. He is also far faster and has to take a lot less walking breaks. We still have a way to go, but progress is definitely being made!

And, finally, the part of this recovery process that I find to be the most frustrating. Before SDR, Andrew had begun to take a few independent steps and was able to stand independently for a short time. He used his spasticity to achieve this, which limited his ability to gain actual muscle strength. I knew that once the spasticity was gone, he would likely lose that ability temporarily while he was gaining strength. The strength in the long term is far better for him and his body than the spasticity was, but it is a slow process that takes a lot of work. It is still difficult, however, for me to see him have an ability and then lose it. However, it is slowly coming back and with better form. These last two videos are extremely important for the impatient me to see so that I can realize that he is making tremendous progress very quickly. Here is him attempting to stand and take a step 2 weeks after his surgery.

And now, here is Andrew attempting to stand and take a couple of steps 12 weeks post-SDR.

Really... WHAT a difference 10 weeks makes. I love having visual evidence that he is progressing and doing so very quickly. I am really curious to see where he will be in another 3 months. 

13 Weeks Post-SDR

The last two weeks have been crazy in this house. First of all, my husband had an emergency appendectomy a week and a half ago... on the day that we had an ice storm that basically closed the town down (we live in the South... ANY ice or snow shuts the town down). Because of that ice storm and my husband's unexpected hospital stay, we were unable to fit in all of Andrew's therapy sessions for the first time since his surgery. He was still able to get in 2 PT sessions, a swim session, played soccer using his walker and used his walker full time at school, but missing 3 PT sessions was not ideal.

This week, we had a snowstorm and the threat of another larger snowstorm. Luckily, even with that, the roads were clear enough and my husband was recovered enough that we were able to get back into the full swing of things this week. Plus, we had a really fun day playing in the snow! Even with the interrupted schedule, Andrew has made good progress in his exercises:

• Andrew decided on his own that he wanted to do an exercise he "created" called Spidermans. This is a harder version of his past leg lifts. It now includes lifting one leg and the opposite hand and holding it up. To everyone except Andrew's surprise, he was immediately able to do a version of it. It was at first sloppy and he couldn't hold it for very long, but after this week's sessions, he is holding it for quite a long time. It is now one of his favorite exercises to do... especially since he looks like a superhero while doing it.

The Spiderman

• Just a few short weeks ago, we introduced half kneels. When he first started this exercise, he was so weak that it took an adult to move him into that position and staying there was impossible. His weak hip muscles caused his legs to flop to the side no matter what he tried. Andrew was completely frustrated by this. So, in normal Andrew fashion, he worked and worked at it. Now, he has mastered getting into the position and can hold it supporting himself (like in the picture) indefinitely and unsupported (hands on his head or to his side while up tall) for a few seconds. We have also started working on him standing from the middle of the floor from this position, which he can currently do with an adult's support and spotting. 

Half kneel.... by himself.

• Independent standing and steps are looking slightly better, but they are still very wobbly and difficult.
• He was able to walk approximately 75 feet with his walker WITHOUT a break! I am amazed that just 11 weeks ago, he could only do about 4-5 steps before needing a break. He is also now  far faster and has much better form than he did 11 weeks ago.
• Speaking of form, he is on his own remembering to get his heels to the floor when walking with his walker. It isn't every time or even 1/2 the time, but he is doing it. Heel strikes pre-SDR were impossible.
• At a doctor's appointment this week, it was determined that he has gained approximately 2 lbs. since his surgery in November. Gaining weight has always been difficult for him and he has been underweight his entire life, even when on a high calorie diet. The doctors have attributed this to the spasticity in his body. Now that it is gone, he is hopefully starting to catch up.

That's all for this week! 

BYE!!

If you are interested in donating to Andrew's therapy and medical expenses, click on www.youcaring.com/helpandrewwalk .

Real Life Super Heroes

I will let you in on a little secret...promise not to tell...

My kids are REAL LIFE SUPERHEROES!! Just ask them. Although, they may not tell you the truth because every super hero knows they need to protect their secret identity.

My kids have a song called "Superheroes" that they created together that they sing all of the time. Daily, they talk about having super powers like super strength and super speed. Benjamin refers to his glasses as his x-ray vision goggles that give him the power to see through things.

One day, Kate came home crying because a little boy was mean to her on the playground. She told us all the story while we were driving home from school. My boys, super concerned with justice, were astounded that she was treated so badly. Andrew, with a completely matter of fact and serious tone asked, "Kate, WHY didn't you use your super strength?" To which she immediately replied, tears streaming down her face, "Because I didn't want him to know that I was a super hero." They immediately decided that this boy was a VILLAIN! A VILLAIN I tell you!! (They wondered why Mommy busted out laughing).

In all seriousness though, I truly believe that my boys are real life superheroes. I know that I am biased...we all think that our kids are the coolest (although in my case, it's true :) ). However, my boys have faced insurmountable odds and have again and again proven that they can rise above what is thrown at them. It's not easy. Most of the time it seems downright impossible. But, then, Ben, who has brain damage in the speech centers of his brain, has a conversation with me where he is actively participating. Or, Andrew takes an independent step, and I am once again reminded at how amazing they actually are.

Ben just came up and independently read this blog post over my shoulder. He then said, "Mom, remember that saving people and getting rid of villains is a good thing. I'm going to save one of my friends." This from a kid who wasn't supposed to talk. At the same time, I am listening to Andrew do his daily post-op physical therapy. He created an exercise he has dubbed "Spidermans," which involves movements that pre-SDR he was not able to do at all.

Real Life Superheroes!!

12 weeks post-SDR

Andrew is officially 12 weeks post-SDR! It's amazing how much life has changed in the last 12 weeks. His wheelchair was a necessity before the surgery. I have not set up the wheelchair in more than a month and it was rare in the 2 months before that. He is a full-time walker user at school and anywhere we go now. He is getting stronger and faster everyday. He is taking less breaks everyday. Exercises that were impossible before SDR and extremely difficult right after SDR have become so easy for him that we have moved to harder versions of them and even left some in the dust. He is back to taking independent steps. He could take a few steps before surgery, but they were the result of him using his spasticity, not strength. Now, the spasticity is gone, so it is actual strength that is allowing him to take steps now. His self esteem has improved significantly. Instead of getting discouraged if something is difficult, he is now saying, "Let's DO this!"

Look at those leg lifts!! Holding for count of 30.
He COULD NOT do this movement at all before SDR.
As in, he couldn't lift his leg up at all.

Drastically improved range of motion for this exercise.
We call these "shark bites."
They have now been replaced by the harder "alligator chomps."

There have been other unexpected results from the surgery as well. Overall, his attitude and attention has improved, even when not on his ADHD medication. He is not getting angry as quickly. He is trying harder on non-preferred activities. I am not sure if it is a reduction in pain in his legs, the increase in self-esteem, or a combination of factors, but I love to see the change in him.

Other changes:

• He no longer has the faulty panic reflex that caused him to curl up when placed on his back in the pool. This has allowed him to learn to float on his back.
• He is now able to begin to learn a flutter kick in the pool instead of the bicycle motion that he did before the surgery. He was so excited that he was able to swim a short distance completely on his own without using his arms.
• No more clonus (involuntary muscle contractions of the legs).
• He can easily push the gas pedal on the power wheels with his foot.
• He no longer needs the "back breaks" on his walker that keeps it from rolling backwards. He has complete control over the walker, even on hills and uneven surfaces.
• He has not used the wheelchair at school once since returning after SDR. 
• He has gained weight. For Andrew, that's amazing. His spasticity was burning off calories at a ridiculous rate. It's gone now and it looks like he might actually be getting enough to allow him to grow. At 10 years old, he is just over 40 lbs. 
• He was able to sit on a regular bike with training wheels and was even stable. He could pedal with help, without foot straps! We've got a ways to go, but are making progress there.
• He has stopped asking for his wheelchair. He's not even sad about not using it anymore. In fact, when I wanted to use it the other day when I was running late, he told me no. I was late to the appointment, but it was worth it.
• Most exciting change of the week? He played in his soccer game with his walker for the first time ever!

If you are interested in donating to Andrew's therapy and medical expenses, click on www.youcaring.com/helpandrewwalk .

Pre-SDR Interview with Andrew

Before SDR, I thought it would be a good idea to film an interview with Andrew to get his perspective on the surgery and what he would like to do in the future. He was incredibly distracted that day, so it ended up being about a dozen blooper reel type videos. I COMPLETELY forgot that I took those videos until I was backing up my IPad the other day and saw them. So, I compiled them together and decided to post it. Sit back and watch.  I found most of it humorous, but there are some parts where you get to see his feelings on the situation. More than anything, this video shows a lot of Andrew's real personality.

Soccer Success

Today, Andrew did something that he has wanted to do for a long time. Today, Andrew played soccer without being in his wheelchair. For the first time ever, he was able to use his walker to play in a special needs soccer game.

Running in his walker. He's getting faster everyday.

Getting to the ball.

Lifting himself up with his arms to kick a goal with both feet.

None of this was possible before the SDR surgery.