The Sweetest Gift

I have some really sweet, thoughtful friends.  My friend Angela found the Pediatric Stroke Awareness colors and asked our friend Nicki to make me a bracelet as a representation.  Ever since they gave it to me I haven’t wanted to take it off, it means so much.  It’s so crazy to me that Ryder turned 5 this year, so for 5 years pretty much this stroke stuff has consumed my life.  It has been a roller coaster of emotions, uphill battles, victories, worry for the future, therapies, doctors, insurance, answered prayers, diagnoses, all the things that come along with having a child with special needs.  The two of them have been there through all of it.  Every appointment.  Every fear.  Every tear.  Encouraging me when I need it and rejoicing with us when we overcome.  Big or small, good or bad, happy or sad, it has never mattered, they are there to listen and want to know all the details!  To me this bracelet represents true friendship, God’s never ending love and faithfulness, and the strength of a little boy who has completely turned my life upside down and changed me, for the better.

Angela & Nicki – I love you both so much, thank you for this gift, it’s the sweetest!!!

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!

Ronald McDonald House

I have to start this by saying, I had no clue what an amazing charity the Ronald McDonald House Charities were until this experience.  I’ve seen the little donation boxes at McDonald’s for years and not really thought much about what those pennies go towards.  Now that I know, my view is forever changed.

The Ronald McDonald Houses set up in areas where there is a large medical community to provide a home for families whose children are undergoing medical treatment.  Some families only need to stay for a night, others are there for several months at a time.  Some of the children are inpatient at area hospitals so the parents are able to stay close by, and other children are going through outpatient treatments and are able to stay with their family

When we got the call that we had a spot at the Ronald McDonald House of Baltimore, I was so relieved.  I had priced out some other temporary living arrangements and just wasn’t sure at all how we would pay to live somewhere else for a whole month.  So to find out they had a room for us, at $15/night, took a huge burden off.  That was only the beginning though…

When we got there we found out we had a free place to park, a free shuttle to take us to and from the hospital each day, pantries full of free food we could help ourselves to, a laundry room with free detergent, free toiletries, are you sensing a theme here?  Ryder has heard me tell this story so many times (it’s just so humbling!) that this is how he tells it “We’re staying at the Ronald McDonald house, and guess what, everything is FREE!” 

Beyond that, they have a volunteer calendar where families, company’s, and various organizations are scheduled months out to come to the house to cook breakfast, cook dinner, and have activity hour with the kids every single evening.  They even have volunteers on the weekend to come bake in the house so the house smells good and there are always fresh baked goods for the families for the week.

Activity hour is something Ryder looks forward to every evening.  He has done so many fun things, from playing Bingo with the Under Armour staff, watching a magic show, playing Duck Duck Goose with students from University of Maryland, potting plants, painting, taking pictures on a Green Screen with the Entertainment Playground, having story time, playing charades, it’s always something different and always something fun and uplifting for the kids.

Each family has a cubby where they can get mail, but they also get surprises in there from people who randomly drop off or send treats for the families.  There was even a day where the NFL sent a huge assortment of stuff that they set out for the families to have.

The Baltimore house is a 3 story building with 36 rooms.  The first floor has the office, a huge playroom for the kids, a piano room, a work out room, a game room, and a living room.  The 2nd and 3rd floors have the bedrooms and huge kitchens with dining areas attached. 

There’s a huge map of the world on the wall and when you get there they give you a pin to place on the map showing where you came from.  There were literally pins from all over the world.  How lucky are we that we have access to some of the best medical facilities in the World within driving distance??  Just in our stay we have met families at the house from Brazil and at Kennedy Krieger from Saudi Arabia.

It’s just amazing that a place like this even exists.  Each family there is dealing with some sort of struggle, some more severe than others, so imagine what a blessing it is to not have to worry about where they’ll stay or how they’ll eat.  It’s such a positive environment that no matter what you’re going through, you’re going to see people smiling and hear kids laughing, and have other parents to relate to that cheer each other on.  Like a big family of strangers! 

I know how thankful I am for the Ronald McDonald House, and our situation doesn’t even compare to some others that we’ve met.  Somehow, someway I plan to give back to this place.  My friend Nicki feels the same way and has already come up with some ideas on how we can work together to volunteer and send donations.  Whatever we come up with I’m sure we’ll be sharing!

Continue to pray for the families if you can, that’s the biggest and best thing any of us can do, and pray for the RM House too.  It takes a lot to make that place run, day in and day out, and they do it because it makes a difference in so many lives.  I know it has made a huge difference in ours and I will be forever thankful to them.

 

Kennedy Krieger: Week 2 & Ryder’s Birthday Week!

Another week has come and gone.  This was a very special week because it was Ryder’s Birthday Week!!!  Yaya kicked it off by bringing lunch, cake, and presents over after Church on Sunday, she always makes us feel special on our Birthday weeks!

Ryder got to go to Awana that evening to see his friends from Church.  Then him & Daddy hit the road just as it started snowing!  I can’t believe we’re still getting snow half way into March, but we definitely are.  Luckily they made it back to Baltimore safe and sound.  Of course I don’t have any pictures because I wasn’t there, but Alan said he had a great attitude and worked really hard at therapy each and every day.  One day I was sitting in the conference room in a meeting when this e-receipt from Toys R Us popped up in my gmail.  A Ninja Weapons Arsenal!  Obviously Ryder & Daddy found things to do in their down time!  Made me smile :)

Tuesday I got off work and me & Maisy headed to Baltimore to spend the night so we could spend Ryder’s whole Birthday with him on Wednesday.  This was Maisy’s first time visiting the Ronald McDonald House, it was good for her to see where brother has been!  Ryder gave her the grand tour, and they wasted no time playing, chasing each other down the halls, and just being silly together!

Ryder had therapy in the pool on his Birthday so we dropped him off, went shopping for a few gifts, then picked him back up when therapy was over and headed back to the House for our own little party.  Aunt Brenda sent Power Ranger cupcakes!

We sang, ate cupcakes, and opened presents.  Thanks to everyone who sent packages for his birthday!  I can’t even tell you how special he feels getting mail, especially for his Birthday!!  He even got this picture from his class, which was the sweetest thing ever!

After the party we were off to the Baltimore Aquarium! 

We had a great time there.  Ryder liked the Sharks the best and Maisy liked the Dolphins the best!  Me & Daddy just loved having all 4 of us together!

After the aquarium it was time to say goodbye – sniff sniff!  Love these boys so much.

It’s actually good for each of the kids to have some quality one on one time with us, the boys really enjoyed their week together!  Thursday evening Alan took Ryder to Medieval times, they had a blast.  He told them it was Ryder’s Birthday, so he got to go down and be knighted by the King.  

Okay so I realize this post is a lot of talk about fun & play and not a lot about work & progress BUT  A) It was Ryder’s birthday week and B) I wasn’t there!  My husband is not a man of many words or details so most of our conversations went like this:

Me: Hey baby, how did he do today??

Alan: He did good!

Me: Yeah?  Did his therapist say anything?

Alan: Yeah, that he did good.

Me: Oh okay, well that’s good!

So if I blogged about that this post would have said…

Week 2: Ryder did good!

the end.

Week 3 starts tomorrow, Ryder is super motivated and has been really making so much progress using Lefty.  Nana even noticed this weekend that he doesn’t seem to be limping or dragging his foot as bad!  On our way to Baltimore today Ryder said “Okay so this is week 3 right? One more week and I’ll get my cast off, yayy!”  He totally gets the plan and the purpose now!

My prayer for this week is that he keeps his positive attitude and that he works extra hard on fine motor skills while he still has his cast on, especially using his pointer finger.  I’m praying for Maisy as she spends another week away from Mommy, she is very much a Daddy’s girl, but all babies need their Mommy’s so this is tough on her.  And if you’re praying along with me, please pray for the other families here at the RM House.  Each one has their own battles they are fighting right now and could use our prayers as they push forward!

A Letter to My Son on His 5th Birthday

Ryder ~

Oh my sweet baby boy, I can’t believe you are FIVE years old.  It really feels like I just had you yesterday, yet I can’t remember what life was ever like without you.  Your life seems like it has gone by in a flash, yet you have been through so much already!  It’s so hard for me to wrap my brain around all of it, but you’ll understand the feelings Mommy is having one day when you grow up and have children of your own!

I’ve always told you how brave and strong you are, but this month you have taken that to a whole other level.  Daddy & I have watched you put on your toughest face and work so hard these past few weeks, we couldn’t be more proud.  It’s hard for us to put you through things that we know aren’t easy or fun, because believe me we want nothing more than to see you happy!  I truly feel that God chose us to be your parents because he knew that we would fight for you, we would push you to be the best you can be, and we would love you no matter what, and that’s what we’re doing.  I hope that one day it all makes sense to you and you understand our reasoning for some of the decisions we’ve had to make.  Just know that we trust God, and we believe in you! 

You have so much to offer this world, I pray that you really do something to make a difference.  You have so many big ideas for such a little person, I can’t wait to watch and see what you are able to do in life.  But for now, I just want your life to be easy.  I want you to keep laughing, being silly, bringing joy to those around you, loving Jesus with all your heart, soul, and mind, all while knowing that Mommy, Daddy, and Maisy love you more than life and are on your side no matter what!

I love you baby, Happy 5th Birthday, you make me so proud!

~ Mommy

Kennedy Krieger: Week 1

Well our first full week at Kennedy Krieger has ended so before week 2 begins I wanted to document how everything has been going!

My last blog post ended with our overly emotional weekend.  Ryder started Monday morning off with more of the same, anxiety about the day, not willing to try anything, and definitely not looking forward to the week ahead.  He reluctantly went back with his therapist, and I set up my temporary workspace (plugged my laptop into the hospital hallway outlet!), texted/emailed with my circle, and I think we all collectively prayed for a turn around.  About an hour into therapy, Ryder came running down the hall with a newfound pep in his step!  He was so excited to show me a doggy puppet he had made.  My eyes welled up with happy tears as he walked away, and I thanked God for that small victory.  A few minutes later, he came walking back down the hall toward me, even happier than before.  This time carrying a pale with a froggy in it.  The froggy had a cast on righty and tape on lefty, Ryder was thrilled that he had this new friend who was just like him and the therapist had told him he could take the frog to and from the Ronald McDonald house with him.  That was the turning point.  He was so excited to have this new little friend, it completely changed his attitude.

His dog puppet that he named Beasley

Posing with “Mr. Too Loud Ribbit Frog” (yes that’s what he named him)

We got back to the Ronald McDonald house that day and he was so excited to have mail for the first time!  Each day for the rest of the week he had something in his mailbox waiting for him, I am so so thankful that people care enough to send something to cheer him up.  I can’t even tell you how much it has helped! We also got a surprise visit from Paw-Paw, that was such a nice mid-week surprise!

With his mail slip that shows up in his cubby when he has a package!

Running down the side walk to see Paw-Paw!

The rest of the week he really was super motivated, worked so hard in therapy, and showed major improvements with using Lefty!  The therapists put a weight in the bottom of the pale the froggy lives in, so carrying that around has helped build some strength.  He has been playing waiter by carrying food to the nurses on a tray which puts his hand and arm in a position it has never been in before, so we’re noticing some huge improvements in his range of motion.  And they’ve been working on him recognizing his individual fingers, like asking him to do things specifically with his thumb, index, middle, ring, and pinky so we’ve noticed major improvements in his pincer grasp.  The two most difficult things for him to do right now are turn his hand completely over, and use his index finger for anything.  One thing he really enjoyed was visiting with Lewis the therapy dog!

We are thoroughly enjoying staying at the Ronald McDonald house, a post about that to come!  But it has definitely been a huge blessing to us and such a positive environment for Ryder to be in.  He feels very comfortable there and has settled into his new routine.  We wake up and get ready, have breakfast, catch the shuttle to therapy, we both work hard!  Catch the shuttle back to the house, heat up lunch or go out for something, come back and play until dinner time, then activity hour, then get ready for bed!  Feels like with all that action the days would fly by, but they definitely do not.

Shuttle Selfy!

My workspace!

The thing we weren’t really prepared for was how emotionally hard it would be to have our family separated!  We face timed every night, but it was just sad to not be together.  Poor Maisy, she had no clue what was going on and was super confused.  She kept saying “Just come home now!  Brother I thought you were my best friend!!!”  She is definitely traumatized, now this weekend any time we talked about going anywhere she would say “Don’t leave me, I’m going to miss you soooo much!”

Friday when therapy was over, we couldn’t get home fast enough!  We were so happy to be back together!  And here it is Sunday and it’s Daddy’s week in Baltimore with Ryder. This week will present its own challenges, it will be extremely hard to not be there with Ryder, but I know Maisy needs me too and I’ll be able to work this week.

Homebound!

His weekend homework!

Ryder turns 5 on Wednesday so Maisy & I will be heading there to surprise him and spend the day with him, can’t wait!!  My prayer for this week is that Ryder gains use of his individual fingers, that he keeps a positive attitude and stays motivated to work hard, and that Maisy doesn’t take all of these crazy transitions too hard.

Here’s to another successful week!