Kennedy Krieger: Week 3

Week 3 DONE – And what a great week it was!!

Each of my weeks have started with a Wendy’s date on our way through LaPlata with these friends!!  Love them!

The NFL dropped off some goodies for the families and one thing Ryder picked out was football face paint sticks.  He proceeded to paint his whole face white, which I couldn’t stop him because he did it completely by himself with Lefty!  I figured we could just wipe it off but Ryder had other plans, he wanted to go to dinner like this and pretend to be a clown!  So he did, and it actually brought joy to a lot of the families at the Ronald McDonald House so I couldn’t be mad.

I love sitting in the hall of the hospital and randomly seeing Ryder stroll by, or run down the hall to show me something!  On this day he came strolling by on a bike, and I had to laugh when I saw he had given it a Harley Davidson license plate!

That night there was a Magician at the Ronald McDonald House.  Ryder LOVED that and was his assistant for most of his tricks.  That boy loves being up in front of a group of people, he has no fear!

He was also a Balloon Man!  Ryder asked him to make a dog, then he asked him to make his Uncle Tim walking the dog.  I was going to post one of these pictures on Instagram but I could envision lots of “comments” from the guys and their dirty minds, so I refrained!

Later that night, Ryder’s room phone rang, and this was his face when he heard that it was Carter on the other end!

He was so excited, he hopped up in the bed and they had their own little manly conversation, calling each other “Bro” and “Dude” and stuff!

Ryder works so hard in therapy during the day, then plays so hard at the RM House in the evenings, that he completely crashes at night time. 

Then he wakes up and does it all over again! 

On this morning he was feeling very spiritual, I caught him praying in the hallway before therapy started!

He’s a special boy! 

The workers at the RM House found him later that evening and took pictures of him to promote the Red Shoe Shuffle race they have coming up to benefit the house on April 6th.

And sure enough, later that night he showed up on their Facebook page!

We’ve been trying to encourage Ryder to work hard with various rewards, one day I promised to take him to the Port Discovery Children’s Museum.  He got to take his first ever ride in a Taxi, which he was SUPER excited about!

I really worried that he’d get frustrated at a place like this because he’d have a hard time doing all the activities with Righty in a cast.  So I was pleasantly surprised that he climbed, and played, and made his way just fine without complaining once! 

We bought this snake that he named “Joey” as a souvenir.

This was the next morning on the shuttle, he brought a sword with him!

And later that evening, the activity at the RM House was painting.  He chose to paint an apple for his teacher, Miss K.  Again, did the whole project with Lefty!

On Friday we said Happy Birthday to little Evelyn.  She is in the same therapy as Ryder and has a hard time using Lefty as well.  I have so enjoyed getting to know her Mommy.  She is where I was about 4 years ago with Ryder!  No clue how delayed he would be, or how affected he would be by the Stroke and his new diagnosis.  She said seeing Ryder gave her so much hope, that was the best compliment ever because I remember being in her shoes and feeling that exact same way!!!

We asked if we could leave a little early on Friday because we wanted to rush home in time to stop by Ryder’s school before the kids got on the bus.  We made it just in time, he had about 30 minutes to spend with his friends and tell them all about where he has been and what he has been up to!

And then home to see our other halves!  I sure do love being able to face time with them, but being together face to face is SO MUCH BETTER!

Ryder had such a great week, obviously we did lots of fun stuff as seen above, but aside from all that he kept such a positive attitude, didn’t complain or get frustrated at all, and worked SO hard every day at therapy.  I can notice so many amazing changes…one being that he actually has a grip now.  If I ever had to hold his left hand before, it felt like I was crushing his fingers and yanking his arm, it was so limp and lifeless.  This week I noticed that holding his hand to cross the street or something, he was actually gripping my hand, purposefully holding it.  When I told him that, he realized it too, and started saying “feel how hard I can squeeze, feel how hard I can pinch your hand!”  He loves to show that off now.  He also was able to pull all his fingers back, and just use his pointer finger to press the elevator button and buttons on his ipad.  The therapist has been having him give “Pointer High Fives” to work on that skill, it’s just amazing all the simple techniques they use and the results that come along with it.

There’s a huge conference this week at the Baltimore Convention Center, physicians and therapists will be coming from all over to attend the seminars that are being held.  One of the seminars is going to be about the Constraint Induced Movement Therapy that Ryder is doing and is being given by Ryder’s main therapist.  She is actually going to be using footage of Ryder during her seminar and asked me to come sit on a Parent Panel to answer questions once the presentation is over!  I’m so excited about this, anything I can do to be an advocate for how amazing this therapy is, I’ve seen the results first hand!

Okay my prayer for this week is that Ryder has a great week with TWO HANDS!!  His cast comes off on Monday and he’ll have a whole week to work on using two hands together.  I pray that he doesn’t revert back to using just Righty this week and in the weeks/months following this treatment.  I pray that his brain has had enough repetition to retain these new skills he has picked up.  I also want to pray for his eyes, they have been drifting off a lot, like this when he’s talking to you:

He is seen by an Ophthalmologist because we noticed his eyes doing this a long time ago when he would get really tired.  But the past week or so it’s happening all the time.  They said it’s most likely from fatigue, his body is working so hard being in this intense of a program, but if it doesn’t go away we’ll need to have him seen.  Hopefully it’s nothing, but definitely worth praying about! 

Last full week, then discharge the next Monday!  There is an end in sight!