Kennedy Krieger!!

I’m so excited (and nervous, and scared, and still in shock!) to say that Ryder got accepted into the Constraint Therapy program at Kennedy Krieger Institute!  It all happened so fast, but the path was so clear that I truly feel God paved the way for this to happen.  On March 6th we’ll be heading to Baltimore for his first day of intensive therapy.  He’ll be casted and spend the next 3 weeks in therapy for 4 hours a day.  The final week we’re there the cast will come off and he’ll have therapy using both hands.  We don’t quite have all the logistics figured out yet but so far our plan is for Alan & I to alternate weeks there with him.  We’re working on temporary living arrangements, insurance stuff, and plans for work and school situations.  But there is no doubt in my mind God already has that all figured out as well.  Pray for our family.  It’ll be a crazy month, but it’s only ONE month that has the potential to change the rest of Ryder’s life!  Exciting stuff, right??!!

Childhood Stroke Awareness & CIT

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!

CIT Week 3 & The Cast is Off!

Week 3 of having the cast on flew by and before we knew it the time came to take it off!  This week we tried to focus specifically on his hand and fingers.  I did a lot of textures with him, trying to get him to use his pointer finger to touch different things…he only seems to have control over his thumb on that hand, so he mostly used his thumb.  I’m not sure what kind of feeling he has, as he gets older I think it will be easier to figure out if things feel different on his left hand than they do his right hand.  Trying to get his pincer grasp working is one of the toughest challenges…but even being able to grab something as small as a penny is a huge accomplishment for him!

I definitely feel that this therapy works wonders for him…even though it might seem a little like torture.  If we didn’t challenge him with things like this, his body would just shut that side down and he’d live in a one-handed world forever.  So anything we can do to help right now while he’s young, we’re up for it! 

I think he is starting to understand why he has to go through some of the things he does. He still manages to keep his silly side through it all.  Here he is telling me to take a picture of “his balancing!”  Miss Stacey would be happy to see that he was practicing his PT skills during his OT visit!

We rode over to his Orthotic Doctor and Dr. Jim was so kind to take his cast off for us.  This worked out great because Ryder is used to Dr. Jim molding his legs and then sawing off that cast when he needs new orthotics, so this was no big deal for Ryder (abby says her saw would have traumatized him for sure!).  I love when God sends little blessings down to us, like Dr. Jim offering to do this at no charge at all, just because he wanted to help out.  Afterwards Ryder felt free as a bird, literally, he kept flapping his right arm and even said to me “Mommy, I’m flapping so hard, will I fly away???”

So this weekend we’ve just been enjoying having 2 hands!  He has resorted back to fisting Lefty a lot BUT when he needs two hands for something he has been doing such a good job of remembering to include Lefty.

We are SO SO proud of him, he really has come so far.  Abby really wants to enforce his new skills and put the cast back on in a week for another 3 weeks.  Right now we’re fighting really bad eczema all over his arm, I think he had an allergic reaction to the casting material, so we’ll see if we can get that cleared up in time.  Keep ya posted :)

CIT: Week 2

Friday marked Ryder’s second full week with his cast on.  Week 2 was eventful since the cast fell off and a new one had to be put back on the same day.  Then Saturday he came down with a fever and was feeling pretty bad all day and night.  Other than those mishaps, he has been doing so well with the constraint therapy…having the cast on is completely normal to him and he’s doing great using Lefty for most tasks. 

We’ve worked a lot on stability with Lefty this week, getting him to be able to pick things up and carry them without losing his grip, and trying to strengthen his arm and shoulder.  We know that once the cast comes off he will go back to using his right arm/hand for everything, but if we can get his muscles stronger and more coordinated then he’ll be more likely to atleast try things with 2 hands.

Some challenges he is having are using his pincer grasp, picking up flat or small objects and keeping a grip on something he is holding.

Last Friday during therapy we worked on eating with a fork.  We had to hold his elbow, pulling it up so that the fork could point straight down to poke something, then pushing it down to get his wrist towards his mouth to take a bite.  This was something I honestly didn’t think he’d get on his own…buuuttttt…Sunday morning when he was up and feeling better from being sick the day before, what do ya know, he wanted to eat his scrambled eggs (with ketchup, gross!) all by himself, and he wanted me to get it on video!

He’s working so hard, I couldn’t be more proud of him.  The cast comes off this Friday, we’re taking a week break to see how he does and it might have to go back on for another 3 weeks.  We’ll cross that bridge when we get there!

Oh The Craziness…

This weekend was jam-packed with action and fun for us!  First we went to our little cousin Peyton’s first Birthday party.  No pictures but the kids had fun celebrating with him.  Next we headed to The Matteson’s for Jaxon’s 1st Birthday!

I really don’t know how this little guy turned a whole year old already, but it happened right before our eyes!  Nicki hosted an awesome 49ers party and we all had a blast. 

 

We were out pretty late that evening, but there was no time to rest the next day because we had even more fun things to do!  We headed over to the highschool to see Daddy and all the other bikes that rode in the Frazier-Mason Memorial Ride.  I love my view looking down at these two in their cool ride:

And although it made me nervous, I liked the view of watching these two of my favorite boys…my husband and my brother…riding to our next destination.

Yes I was snapping pictures in the car…I was bored because these two were trying to catch up on sleep so I had no one to talk to!

Wow, safety first, Mother of the year over here, I’m totally telling on myself with this picture.  Okay moving on…

Our next stop was to Carter’s Birthday party!  Of course I didn’t get any pictures of the Birthday boy, but the kids always have fun playing over there!

We had so much fun partying it up all weekend, but then it was back to the serious stuff on Monday!

Monday afternoon we headed to Richmond for Ryder’s routine kidney check-up.  They took a sonogram of his bladder before and after going potty, they showed me on the pictures how thick and muscular his bladder wall is…this is a residual affect from his blockage prior to birth.  The sonogram of his kidneys came back great as he didn’t see any dilation at all!  So basically his kidney’s are healing perfectly and his bladder issue is something he will live with and learn to control.  He is going to have the ability to hold his pee for a long time and then not really feel the sensation of completely emptying.  Right now he tells me pretty frequently that he has to go, so it’s like he only lets enough out to where he doesn’t feel it anymore, so it fills up a lot sooner and he has to go again.  His kidney doctor was happy to hear that and said it’s better for him to go a little bit a lot than to hold it for a long time because that will give his kidney’s a chance to resort back to what they know and start to reflux again.  He said we’re at a crossroads right now, everything looks so great and could be on a great path to no issues from here on out, but we have to pay close attention for any unexplained fevers or bad smelling urine because now that Ryder has a choice on whether he’s going to go or hold it…it could mean trouble.  He said “I see he has some contrary in him, so let’s hope he doesn’t start to purposely hold his pee and not go”…haha yeah I’d say he has some contrary in him!

What’s today, Tuesday?  Losing track here.  Today Ryder had 2 back-to-back therapy appointments scheduled, OT and then PT.  Just as I was getting ready to leave work to go get him I got a call from Nana that Ryder’s cast had fallen off!!  I called Miss Abby and she rearranged her schedule so that she could put a new one on immediately.  This led to the “Day 1 of casting” emotions all over again, so it has been an interesting evening.  I know he’ll wake up tomorrow in good spirits though and we’ll just keep on moving…

There’s never a dull moment! 

CIT Week 1

Well we made it through the first week of Constraint Therapy and we’re all still in one piece!  The first day was definitely the worst, but with each day it becomes more “normal” for him to have the cast on and he doesn’t even ask us to take it off anymore.  We’ve been amazed at how much function Lefty really has this time, I guess the combination of Botox plus the casting is really working! 

He got a huge can of playdoh for his Birthday that I purposely hid in his closet because I knew it would be perfect to take out once he got his cast on.  So each night after Maisy goes to bed we have our special playdoh time.  It’s great because Lefty has to work so hard but he’s still enjoying himself. 

 

I love that I have videos to compare this stuff to from one year ago when we did this therapy for the first time.  Here he was playing playdoh with lefty then…with all of his long-haired, tiny voice, cuteness!

 

He has gained so much strength and coordination with his left hand in just 1 year.  It’s a great feeling to see all of his hard work paying off.  Here he is throwing treats to Beasley out the window…it amazes me to see him grab for something and actually get his hand to land where he is aiming, this is something he used to struggle with big time!

Having Righty in a cast is most helpful during therapy, because during a normal session a lot of time is spent trying to convince him to try something with Lefty.  He knows how easy he can do everything with Righty so he only wants to do things one-handed.  Now that he doesn’t have that option, Abby is really getting Lefty to do some challenging things that he wouldn’t have even tried before.

Just to see him able to do a normal task like eating a popsicle with his left hand is enough confirmation for me that week 1 has been a huge success.  Challenging at times but SO worth it to see our boy making progress!

Meet Street Glide!

Just over a year ago, we did our first round of Constraint Induced Therapy with Ryder, where his good arm is casted for a 3 week period of time to encourage him to use his arm that lost function when he had his stroke.  He cleverly named that cast “Sword Fight” because to him, he had his own personal sword attached.  Knowing that our next round of CIT was approaching, we have been asking Ryder if he’s ready to get Sword Fight back on.  If we were smart, we would not have carried the name over, because as soon as he got it on today he was swinging it around yelling Hi-Ya with a much bigger cast and much stronger,more powerful arm than we were up against last year! 

When Daddy got home, he got the marker out and asked Ryder what he should write.  Ryder said “Street Glide!”.  So we will no longer be referring to his cast as Sword Fight, it is now Street Glide.  We’re trying to encourage him to vroooom it along like a motorcycle instead of swinging it like a sword!

Friday mornings we have therapy at 7am (soooo early!) so today that meant getting casted at 7am.  Ryder was a good sport, as he always is.  He sat still, watching Blue’s Clue’s, asking questions, making us laugh, even stopping for a Hi-Five after the padding was on.

Once the cast was on, he tolerated it for all of I’d say…15 minutes, before he realized how much it SUCKS not having righty!  Sorry, but it does.  I know it sucks for him, and it sucks for me having to watch him struggle…no other word comes to mind.  All we can do is try to help him succeed to gain the strength and confidence he needs with Lefty.

On the ride home he began panicking because he couldn’t see his fingers.  He was really upset so I pulled over to comfort him and the only thing I could think to do was take a picture with the camera and show him that his fingers were in there and they were okay!  He was fine after that.

We’ve been trying to do things with him today that don’t really require any fine motor skills, to keep him from getting even more frustrated.  Like helping Daddy cut the grass!  And watching his favorite shows!

He’s having to use Lefty now to pick up his drinks (had to go back to cups with handles to make it easy for him) and to feed himself.  You can see in the picture above that he has associated movements, he lifts righty every time he drinks because his brain just doesn’t understand that Lefty is doing it. 

I’ve been pretty amazed today watching him eat.  If you can remember back to when we did the last casting, it took him almost the whole 3 weeks to be able to feed himself blueberries with lefty.  Even though an entire year has gone by that he resorted back to doing everything with Righty, he immediately picked that skill back up today.  If he’s picking up blueberries and feeding them to himself on day 1, I can’t wait to see what he’s capable of 3 weeks from now! 

 

Just for fun, this is him trying to eat blueberries with Lefty last year.  To say he has come a long way is an understatement!  Just the simple fact that he’s not eating them off the floor this year is a big deal!

 

We couldn’t believe the size difference from his cast last year to the one this year!  I don’t even remember his arm being that tiny only 1 year ago!

Miss Abby gave us homework, we had to fill up 2 bins with balls and for 20 minutes each day Ryder needs to stand there putting all of the balls from one bin to the next.  I got the bins set up and hadn’t planned to put him to work today, but when he asked to “play” of course I wasn’t going to say no!  He did SO good picking up each ball (or object) and getting it to the next bin. 

Day 1 has definitely been a roller coaster.  We had our moment in his room where we both just had to cry.  This year is a little different because he’s asking real questions and expecting real answers.  He’s starting to realize that something is different about him.  We’re having conversations with him we haven’t had yet, nor had we prepared what we would even say when the time came.  We’re just rolling with it though, he’s a smart boy and he’s also very brave, so I know he can handle all of this. 

1 day down, lots more to go.  Plan on seeing a lot of Street Glide around here in the weeks to come!