A Letter To My Daughter On Her 3rd Birthday

 

Maisy ~

Oh my sweet baby girl, how in the world are you three years old already?  If you were sitting next to me right now you would have already interrupted me to say “I’m DADDY’s baby girl!” and I’d be shaking my head and laughing.  You are a Daddy’s girl, through and through, but you will always be my baby girl too. 

What would we do without all your sweetness and alllll your sass??  You are so very passionate about everything you do – whether it’s giving the tightest hugs, the biggest smiles, the loudest laughs, the best kisses, the saddest pouty face, or the hardest hit when you’re after your brother – you do it all with so much intention, that very trait will get you so far in life!  You are a woman with a mission, dream big baby girl!

Some of your favorite things right now are macaroni and cheese, bubble gum, the beach, and your guinea pigs.  You are quite the animal lover, I see lots of pets in your future!  But of course, your #1 most favorite thing in the world, is your Daddy.  And that just might be one of my most favorite things, seeing you two together!  I pray that you always see him as your hero and that you find a man just like him one day who treats you like the princess warrior you are!

Mommy loves you so much, forever and ever.  Here’s to another year of fun, laughs, and time-outs!

~ Mommy

A Much Needed Ryder Update!

Well, Ryder finished up Kennedy Krieger on Monday, April 7th!  I was hoping to post some videos of his progress but the website I use (One True Media) is closing, so not only can I not upload there anymore, I’m actually going to lose all the video’s I have posted throughout this blog!  I love looking back and playing the videos at any point in time, so I’m really bummed about that.  But I promise to start a YouTube account and get some new videos on here soon!

But just a recap for now.  They were very happy with Ryder’s progress while he was at Kennedy Krieger.  They did the same test on the last day that they did on the first day and you could see SUCH a change in the way he was able to manipulate objects, and successfully complete tasks that he struggled with just 5 weeks before! 

Since he has been home, he has regressed, which is always to be expected.  We’ll catch him fisting or trying to do something one handed, but with a quick reminder he can usually open that hand up and start using it the way he should.  He gained some MAJOR skills through the program though so no matter what it was all worth it.  He is now able to get his shirt, pants, and underwear both on and off!  He’s also able to open baggies and drinks and containers.  These things are so important to his independence and ability to help himself.  With these new skills has developed a new level of confidence, you can see the pride beaming from him when he accomplishes something that he knew he struggled with so much before!

At his first regular therapy session after we were back home, they tested his goals and he was meeting them left and right!  Goals he wasn’t planned to meet until the end of the year!  So now they were able to make new goals and have him start working on more challenging things, like putting on/taking off socks & shoes, cutting on the line, doing small buttons, etc.

We had his IEP meeting at school last week and they too are so happy with his progress this year.  His handwriting has really improved, his ability to participate in gym class and keep up with the other kids, putting his bookbag on or taking it off, unzipping it, packing/unpacking it, a lot of things he required extra help with in the beginning of the year, he is ending the year being able to do by himself!  This is so comforting for me to hear, I never want him to struggle.  I got to meet his Kindergarten teacher and hear the ways that she will plan to help him succeed in her classroom (again so comforting) and they will continue giving him Occupational Therapy once a week next year.

Okay now back to reality, I will update on the kids soon, they are being as crazy and funny as ever, can’t wait to share them with you! 

A Little Background (or a lot)

Before I talk about the end of our journey, I really want to rewind and go over exactly how we got here.  Which, no doubt in my mind, was perfectly mapped out in God’s plan for us.

Ryder was diagnosed with Left Hemiparesis right around his 1st Birthday.  I immediately started searching to find out what his prognosis looked like and what treatment options were out there.  I came across a place in Alabama who had created the Constraint Induced Movement Therapy and had a center devoted to this therapy for children.  I reached out to them for information and found out the cost was $15,000 and not billable to insurance.  I kept it in the back of my mind as an option for Ryder, an option that would obviously be a difficult one to make happen for us.  I mentioned it to his regular therapist at Children’s and she put an offer out that she would be willing to cast Ryder and do a modified version of the therapy, which is how we ended up casting him at 1, 2, and 3 years old! She has since casted other patients and been able to help them with a modified version of the therapy as well.

So a few months ago, a friend of mine sent me an article from a local newspaper (thanks Sandy!) about a boy who had a stroke and went to an intensive therapy program at Kennedy Krieger, his parents were raving about the treatment in the article, saying how much function he had regained.

The next therapy appointment Ryder had that week, his therapist brought up casting, asking if I had thought about casting him this year.  I told her I was on the fence, and she said she thought he was ready for a more intense program, like the one at Kennedy Krieger.  I couldn’t believe this was the second time I had been hearing of it in a week.  When I got to work and googled Kennedy Krieger and saw that it was right in Baltimore, I was super excited!  I called to get some info about the therapy and planned to get him on a waiting list for this Summer if it was available. 

When the nurse called me back, we began talking about Ryder and our situation, I was super happy to hear that they DO bill insurance, but was then disappointed to hear that they didn’t take Virginia State Medicaid because it’s out of state and their rates are extremely high.  Luckily we have always kept Ryder insured on our private plan incase a situation like this ever came up, we always want him to be able to get whatever care he needs.  So she said she’d run it through our insurance to see what portion would be covered and she’d get back with me.  I hate thinking that money could be the deciding factor in situations like this, but realistically there’s only so much we can handle, so we were anxiously awaiting this call.  When she called her exact words were “you might want to call and double check this because I don’t see it often, but it looks like the therapy appointments will be covered at 100% because they’re being given at a facility.”  I knew it was true, because I could feel God guiding us down this path.  The next part, proved that.  Our insurance offers 32 Occupational and 32 Physical therapy sessions per calendar year.  Kennedy Krieger needed to bill for 26 of each.  The difference of the appointments were about how many we have already used this year!  Their team meets once a week so she was going to see if they could squeeze Ryder in so we didn’t miss this perfect window.  She said if I could send her video footage she could use that instead of having to schedule us an eligibility meeting.  Thanks to this blog, I was able to provide her with the video footage 5 minutes later!  She called the next day and said they thought Ryder would be a great candidate, they were able to fit him into the schedule, and gave me an admission date of March 6th, about 2 weeks notice.  This gave us just enough time to run everything by our work, find out that we got a room at the Ronald McDonald House, meet with Ryder’s teacher, and … go!

All of the rushing didn’t leave a lot of time for me to have anxiety about it, I just knew it was the right thing.  I definitely didn’t have time to mentally prepare for how hard it would be on us to be separated, it sounded so perfect that we would alternate weeks so one of us would be with each kid.  But being apart definitely took its toll.  During the beginning of our first week there, Ryder was having a hard time, and I felt like we were climbing very slowly up a big hill.  I started to realize that the Enemy was getting the best of us, we had been giving God all the glory for all that He had done, and now we were facing some trials.  One evening I had a particularly long day, Ryder and I were sitting in the dining room and I was texting Nicki saying, wow…this is hard.  When all of a sudden I could hear the tune of  the Christian song “10,000 Reasons” playing on the piano downstairs.  Mind you, we were told in a joking/serious manner during our tour of the house NOT to play the piano if we didn’t know how, and this was the first time I had heard anyone actually play.  (and the ONLY time for the whole month we were there).  It completely snapped me out of my funk and helped me to realize I was not alone in this, God was still in control and we would be just fine.

The next week, it was my week at home with Maisy and it was also Ryder’s birthday week.  We were really excited to go stay the night Tuesday so we could spend Wednesday with them.  But first, we had to get through Monday night.  FIRST OF ALL, let me say that the previous week, Daddy’s week, little miss made a new sleeping arrangement, in bed with him, on my pillow.  So Monday night was not a fun one for a Mommy trying to break a bad habit of a 2 year old.  So at 10:00 night when she came in my bedroom for the 100th time and reached her arm up at me and said “help me on the bed Mommy”, I finally caved, grabbed her arm, and went to assist her onto the bed. Only she fell and I pulled and heard some interesting cracks and pops and then there was my baby girl screaming on the floor.  A phone call to Aunt Brenda led to a visit from her and a Paramedic friend which led to me & Aunt B driving Maisy to the emergency room at midnight.  I thought she had dislocated her shoulder, but it ended up being her elbow.  We got home and in bed around 5am, then got up at 7 to head to work, I couldn’t imagine calling out another day when I had just been off for seven!  I still didn’t think her arm was 100% so I ended up leaving a half day planning to take her to Nicki who has experience with nursemaids elbow, but when Vicki dropped her off at my work, she was all better!  Which meant we could head straight to Baltimore for more time with our boys!

I actually got pretty good about driving around the city. At first I was terrified, but Ryder decided that he LOVED the city, so I got brave trying to go out and about and take him places.  (Seriously he says he wants to move to the city!).  I had another WOW moment in the car, well first of all, thank GOD I traded in my car!  There is no way my old car would have made it up and down the road like that, and there is no way I could have maneuvered Alan’s truck around there!  So in the first few days of driving my new car I was programming my radio stations.  I really enjoy listening to the Christian music stations, so I set the 2 stations we get, and then was using the “seek” button to decide what to put on the rest.  I came across this station that was really fuzzy, but it was playing one of my favorite Christian songs, so I left it on and listened, then another great worship song came on, and another.  If someone were in my car that day they would have thought I was crazy listening to this fuzzy noise, but I knew the songs and loved them so I was able to keep up.  I decided to program that station as my #3.  Would you believe that driving around Baltimore one day, I was clicking through my presets, 1…commercial, 2…didn’t like the song, 3…fuzzy station was not fuzzy anymore, it was playing one of my faves, and right after the song it said “95.1 Shine FM, Baltimore’s positive hits”! 

Sometimes God takes us completely out of our comfort zones, puts us face to face with situations we wouldn’t particularly choose for ourselves, and then shows Himself to us. What an awesome feeling that is, to know that the Creator of the universe cares about me and what I’m going through.  So much so that he plants little seeds of encouragement and hope to get me through.

Sometimes he sends that encouragement through friends & family, we were so thankful for all the cards, letters, emails, texts, packages, our Church Family was so good to us while we were away, what an amazing experience.

The timing of this whole journey couldn’t have been more perfect.  I had just completed a huge project at my Company that I would have never been able to be out of the office while it was going on, and it opened the door to a lot of work I could do remote.  The Occupational Therapy Association was having their annual meeting during that time and it just so happened to be in Baltimore, so we got to attend, speak, and MEET those people from Alabama who I had found in my research years ago!  Being at the RM House for the Red Shoe Shuffle was so amazing.  And for this to be done and out of the way as Ryder prepares to start Kindergarten next year.

It truly all happened in God’s perfect timing!

One more post to come about our last few days and some video footage!

Red Shoe Shuffle

Sunday was such a fun day for us!!  We woke up at the Ronald McDonald House, looked out the window onto Lexington Street, in the city of Baltimore, and could see all the commotion of Race Day being set up.  Hundreds of volunteers moving in all different directions, setting up a stage, food stands, tents with different activities, testing the mics, getting everything ready for The Red Shoe Shuffle.  What cool timing for us to be at the house during this annual event!  We got dressed in our red shirts, red shoes, and Ryder even had red mousse in his hair, and headed downstairs for the fun. 

Maisy gets a little uncomfortable around people she doesn’t know, so she had her grumpy face on.  But the first table we came to on the sidewalk right outside of the house was a Nail Salon sponsor who was giving free manicures, that sure cheered her up!

Ryder was on a mission to find the REAL Ronald McDonald, and didn’t take him long to spot him and make his way over then jump into his arms!

He continued to find special people to take pictures with throughout the day!

They had the road in front of the house shut down and all the festivities went on right there in the street. 

Once people started arriving the place was getting packed, they said there was about 2500 people there!  The way this community comes together to support the Ronald McDonald House is unbelievable.  They take such good care of the families by volunteering every day, and then raised $290,000 at this event!!

Ryder of course made great friends with the girls in the office, so Miss Sandy, the Director of the Baltimore Charity told Ryder to meet her around the stage at 8:30am.  He could hardly wait for his chance to go on stage, he told them he made up a dance for the Red Shoe Shuffle.  And sure enough, he got up there and led the crowd with Ronald and the MC from an area radio station!

The Ryder Shuffle!

Then he got on the mic and told everyone his name, how old he was, and said “Now everyone line up!!”

We didn’t do the race itself because we didn’t have a stroller or anything, but it was so neat.  They had all kinds of plaques to give out for different categories.

And there was a group there called Athletes Serving Athletes, who make it possible for anyone who wants to participate in the race can.  They will push them in wheelchairs, strollers, stretchers, whatever it takes!

While the big race was going on they had a little McDash for the kids.  Maisy looked so unsure standing at the Start line:

But as soon as they blew the whistle, girlfriend took off!

She ran right through the Finish Line and kept on running!  They had to chase her down to tell her she won! 

She was so proud of her medal!

She even got brave enough after that to say hi to Ronald!  As long as brother stayed with her!

She’d much rather hug and kiss all over the fake one in the house!

We had such a fun day!  It was such a positive atmosphere for such a great cause, this is something we definitely plan to participate in for years to come! 

Sweet little shufflers!

Kennedy Krieger: Week 4

 

Last full week at Kennedy Krieger!!  And this week was so important because Ryder got his cast off on Monday!  I took a pic with my boys and sent them off on Sunday afternoon.

Monday after therapy Ryder called and said “I’m FREE!!  Mommy my arm is free!!”  He was so excited.  Alan sent me this picture a few hours later of him swinging, holding on with both hands.

We face timed later and Ryder was drinking out of a cup, using righty and fisting lefty, I said “what is lefty doing??” and he switched hands and showed me that he could still drink using lefty!

On Wednesday we were invited to speak on a Parent Panel at a Constraint Therapy seminar Kennedy Krieger was hosting at the Occupational Therapy Association’s annual meeting. I worked a half day then headed to Baltimore to get my boys.  I wasn’t really sure what to expect, but we walked in the room and there were 4 chairs in the front of the room specifically for me & 3 other moms.  There was a room full of therapists and other professionals in the field that had spent the day learning about Constraint Therapy and had lots of questions for us!  But first, Ryder saw there was a microphone and walked straight to the front to ask “Can I talk?  Can I say something?”  His main therapist he has been working with was leading the seminar so she laughed and handed over the microphone.  I swear, it was as if this child had planned a speech.  I wish I would have had my phone on me to record, but this is pretty much how his completely unplanned, unprepared speech went:

“Hi, My name is Ryder, I’m here to talk to you guys about Constraint Therapy.  So when I was a baby I had a stroke that damaged this side of my brain, which affected this side of my body.  When I was a baby I never really used my hand so I did constraint therapy to help me get stronger.  I did it before at my other therapy but I hated the cast because it was too itchy.  At Kennedy Krieger they use a white foam inside their cast, so if you’re going to do it USE THAT!  I’ve been here for 3 weeks so far and this is my 4th week and I got my cast off so now I’m working on some two handed activities.  Let me show you some things I can do!”

And he went on to do some demonstrations of pinching and pointing – I don’t know what it is about a microphone and an audience of people but that is where he’s most comfortable!  After Ryder’s 10 minute ice-breaking speech, the Moms each told our stories and then answered lots of questions.  It felt SO good to be an advocate for this type of therapy.  It’s really not something you ever hear about, but it WORKS.  We’ve seen the results first hand.  So I truly hope that our voices helped convince a few people in the room to take it back to their practices.  I even gave out my contact info for them to pass on to other parents wanted another parent to talk to if they were considering it for their child.

After that we headed from the Convention Center over to the Arena for the Circus!  Another fun adventure, we’re definitely taking full advantage of all this free time together!

That morning Ryder had therapy at the Kennedy Krieger Pool, then with the Conference and then the Circus didn’t start until 7:30pm, our boy was wore out!  He made it about 40 minutes into the Circus then finally said “I love the Circus! But…I’m ready to go!”  So we bought the DVD and headed back to the room.

I love seeing the bond these two have developed during all this time together.  They have all these inside jokes now and funny things they say and laugh about.  Another little blessing in all of this…spending one on one time with each kid!

Thursday morning I woke up early and made the drive back to work…a little ridiculous that I can get there earlier from almost 3 hours away, than I can from 10 minutes down the street!

Maisy & I enjoyed our time together as well.  One evening we were headed to the grocery store and I saw her walking over to the mud puddle…I decided to just get my camera out instead of yelling at her, I knew it was coming!

This girl loves to cook in the kitchen.  I usually try to keep them out of the kitchen while I’m cooking because it makes me nervous, but since it was just me & her I let her help, she felt like such a big girl!

The girl doesn’t like to be away from her Daddy too long though.  I found her pouting out of the blue one morning and asked her what was wrong. She said “Oh I just miss my Dad a bit”.  Of course that broke my heart, but it was Friday and he was coming home later that day so I knew she’d be alright! 

So tomorrow is Ryder’s last day of therapy.  I’m anxious to go through his discharge and see what they think about his progress.  We can definitely notice a big difference!  His arm and hand has so much strength in it now, he can pinch things to pick them up, and we even got to see him get his pointer finger working.  We’re still at a point where we have to cue him to use 2 hands but atleast now when he does he’s having more success at doing whatever he was trying to do! 

I can’t believe this journey is coming to an end! 

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!