I saw this sign the other day and I was like YUP! It’s crazy that they have a whole month dedicated to Childhood Stroke Awareness! It definitely consumes us, but it’s true, when someone finds out that our child had a stroke, they have never heard of it and can’t believe that it can even happen. With no awareness there is not much research being done to figure out what is causing this or why it happens. It’s just kind of like, well it happened, not sure why, but here’s what to do moving forward! Fine with us, we’re all about moving forward!
We have always been focused on Ryder’s recovery and helping him to regain whatever strength and function he lost from having a stroke. His stroke affected the motor skills controlled by the right side of his brain for the left side of his body. The Neurologist thought that his leg would have been more affected than his arm, but once he started walking, running, and jumping it became apparent that his arm and hand needed the most attention.
He receives Physical Therapy (she still cares about his leg!) and Occupational Therapy at Children’s Hospital Therapy Center once a week and he also receives Occupational Therapy once a week through the school system. He’s followed by a Physiatrist who manages his therapies and any procedures he needs and an Orthotist who makes sure he has the right device on each foot to get his legs and feet in the right positions.
I’m so thankful for the team of people we have that have been working with Ryder from the beginning. They notice things that I would never even know were an issue, like how his shoulder blades are lopsided, his gait is twisted, what areas have low or high muscle tone. They also monitor future problems that Ryder could face like tendon lengthening surgeries, hip problems, and even scoliosis. But most importantly his therapists work with him each week and tell us what to do at home. Without them I know Ryder would not be nearly as functional as he is now.
One way that we try to get his brain to start sending signals to his left arm and hand is by participating in a round of Constraint Induced Therapy each year. I blogged in detail about this process the past 2 years but since I’m currently blog slacking I’ll have to summarize this 3rd round right now! I’m a firm believer in this constraint therapy and although it seems like torture it is the one thing I am POSITIVE has helped him progress leaps and bounds faster than if we had never tried it. And now that we’ve been through 3 rounds of it I can identify exactly what he has gained each year. The first year was all about awareness, at that point he really wasn’t even aware that he had another hand to use. He had just turned 2 years old and he knew nothing but using just one hand for everything. We took that hand away and you could see the wheels turning as he realized “Oh, what’s that hand doing there? Maybe I can make it work!”. The second year he was 3 years old and very verbal, he knew all about Lefty and that he was supposed to try to use it for things, but he knew it was much easier and faster to just use Righty since Lefty was so weak and uncoordinated. So we casted Righty and the 2nd year was all about strength! All of the exercises and work we did during the casting made Lefty so much stronger, and with strength comes coordination, so it was the perfect place to start.
This year was very bitter sweet. He has been trying to convince us for months why he did NOT need to be casted again but we moved forward anyway. Even though he did not want it at all, we knew that he would gain so much from another round of casting, and he DID! This year was all about function! I have been waiting SO long to get to this point! He has never had a pincer grasp or been able to make just one finger do something, but we put that cast on and almost instantly he was trying with all his strength to point with his pointer finger. It’s a struggle, but you can just see his mind and muscles all working together to figure it out and we were so proud to see him succeed. One of the most amazing things he was able to do this time was pinch pennies and put them in a piggy bank! These skills are so important because if he can get his thumb and forefinger working then he’ll be able to do things like tie his shoes by himself, do his own buttons, open bags and drinks, just all the things that kids are going to start doing independently that we haven’t been sure he’ll be able to do. Okay onto some pics and a video!
Casting was a bit of a challenge this time, he knew all about what was going to happen, but as soon as they covered his arm and he couldn’t see his fingers he went into complete panic mode. So much that we decided to leave his fingers poking out a tiny bit so that he could let go of the anxiety.
He picked out Angry Birds & Batman Duct Tape to decorate with and named it “Batman Saves the City!”
We added a few extra therapy sessions each week to get as much work in as possible. Therapy always cracks me up, they do the most random things!
They let us bring home some things this time so that he’d be working on very specific things. Maisy was SUCH an awesome cheerleader, she would want so bad to join in and do it for him but she was very patient and encouraging.
His frustration level lasted much longer this time, usually after the first 2 days he’s used to having the cast on and doesn’t care anymore, this time we were well over a week before he was fine. So I tried to keep him busy and distracted. This kid always figures out ways to get what he wants, he’s walking around with a bag around his cast (no sand or water in there please!) and meets a little random girl on the beach, next thing I know she’s carrying his treasure chest around for him…and then laying under the table playing his favorite game “Belly Ache Doctor!”
As the weeks progressed I could notice such a big difference in how much he was willing to do with Lefty and how easily.
Another one of his major accomplishments this time was being able to drink out of an open cup! He never would have had that coordination before!
He did such a great job, I seriously could not be more proud of him and Lefty’s accomplishments.
People always laugh when they hear us refer to “Lefty” as if its a whole other person. In his mind I really think that’s how he can make sense of it right now, so we just go with it. Anything he does with his right arm just comes natural but he has to tell his brain if he wants or needs to do something with his left side, so naming it has been the best trigger for us and him to get his mind redirected.
Me & his OT got a good laugh when he first got his cast on and he sat down at the table to stack some blocks and said “Look guys, Lefty knows his colors!!!!” Of course I followed up with “Wow, he knows his shapes too!”
I hope that one day he looks back at this and sees how much determination and drive he had at such a young age to work toward a huge goal! He was so upset with me for doing this casting but I know it’s what’s best for him in the long run and I think he’ll understand eventually. For now he’s just looking short term and the BIGGEST reward ever was the day Dr. Daddy got to take it off!!!
He couldn’t stop flapping his little arms around yelling “I have two hands!!! I have two hands!!!”
So Constraint Therapy is over and we’re all happy because of it! Stroke or no stroke, this boy is awesome and we couldn’t be more proud watching him grow!
