It’s All Good!

Ever since we found out about Ryder’s stroke, the word “orthotics” has been bounced around here and there, but always in the context of something we’ll need to talk about wayyyyy in the future when he starts walking.  Well guess what…we had the conversation during PT yesterday!  His therapist thinks he is SO close that she wants to get the ball rolling now so that we’re ready to get his legs doing things the right way from the beginning. After evaluating the tone & spasticity in his legs, his stance, and his range, his PT thinks that we’re going to be able to start out small, with just an insert in his shoe that will support his ankle and help form an arch.  Right now he is extremely flat footed and his ankles pronate (turn in), but she said the muscles and tendons in his legs are doing great so she wants to hold off on doing the big braces for now.  Yayyyyyy!!  Now we just have to get a referral from the Pediatrician to go see an Orthotist and hope that he agrees with her recommendations!

Alan, my-husband-who-wins-the-award-for-absolute-best-colorer-I-know, colored this picture the other day that brought tears to my eyes.  It reminded me that whatever physical ailments Ryder has will be gone one day…whether here or in Heaven, either way, they are not permanent and he will be healed.  It also reminded me of Alan’s mom, who just had a Birthday on Saturday and will have been gone from us for 5 years on Tuesday…but is living it up in her new, perfect body, hanging out with Jesus and watching down on us :)

In other “It’s All Good” news – we were able to salvage all of the pictures off of our computer, thank goodness!  The computer is not repairable, but it was time for an upgrade anyway.  So I’m computer shopping and will hopefully be back in business soon.

Did you notice how well Ryder just climbed onto his toybox?!  This child is amazing, and so proud of himself, as you can see!  Makes Mommy a little nervous, of course, but hey…It’s All Good!

We Did It!!!

It’s official – Ryder gets to throw the 1st pitch at the Richmond Flying Squirrels baseball game on August 12th!!

 

Together with the Kidney Foundation, we were able to reach our goal and sell 200 tickets to the game!  Thanks so much to everyone who bought tickets, I can’t wait to see you all at the game, we’re going to have a blast!  And to those who bought tickets with no intention of going to the game, but just wanted to get Ryder on the field, you are SO sweet, thank you for your support!!  A special thanks to my Mother-In-Law, Cindy, Nana (pick a name) for leading a huge ticket selling campaign!  Not only has she been busy selling LOTS of tickets, but she’s helping to keep me straight with all the lists and money too! 

So, here’s the scoop: All the tickets will be held at the box office as will-call to be picked up the day of the game.  We’ll all be sitting in the same section and the NKF is asking everyone to arrive at 6:05pm, 1 hr before game time to have refreshments, talk about the upcoming Kidney Walk, and get pictures taken with Nutsy, the Mascot.  Then at 7:05, Ryder will be making his Baseball Debut!!  After the game there will be fireworks.  We’re excited :-)

Story Time With Ryder

Take a break and read a story with us.  I promise you’ll be entertained :)

The Good News or the Bad News?

I’ll start with the bad news…MY COMPUTER CRASHED!!!  *sniff* *sniff* Excuse me while I compose myself.  I’m hoping and praying that it can be fixed, or that ALLLLL of my pictures can atleast be recovered.  I’ll keep you posted on that. 

Now onto MUCH better news…lastnight Ryder took his first steps!!!  It was a complete fluke, he had used Bubba to pull himself up to stand and then Bubba walked away, which he has been doing leaving Ryder standing alone (like in the picture below), which normally results in him sitting down on his butt.  But not this time!  Ryder tried to reach back out for Bubba and took THREE steps toward him before falling!!  I was SO excited, Alan was too, except we express our excitement in different ways (picture me jumping up and screaming with tears streaming down my face…and Alan not even flinching but having a huge grin plastered on his face).  I don’t know if he’ll have the courage to try it again any time soon, but I will be on standby with my camera, and my pom-poms!

Flashback Friday

Today I’ll flashback to last July, hanging out at Grandma’s, enjoying the sunshine on the water, finding our toes, no other cares in the world!

Double Ear Infections

That’s what we’re dealing with today :(

Poor pitiful baby!  Should be better by tomorrow once the antibiotic kicks in.  For now, I’ll just be enjoying all the snuggles I can!

16 Months

 

Well we are 1/3 of the way to having a 2 yr old…and I’m realizing that the second year is going to fly by just as fast as the first did!  We’re having so much fun though and making memories that will last a lifetime, so we’re trying to cherish every second. 

Here’s what Ryder is up to these days:

• Talking, talking, talking!!  Some new words he has added to his growing vocabulary are: crayon, yellow, blue, boy, girl, lock, crawl, walk, please, climb, slide, kick, chew.  The biggest word he says is “seriously”!  I’m serious, he seriously says seriously, sounds like “seeyuuussyyy” and I have no clue where he would get that word from, ha!  He also has started putting two words together like all gone, all done, turn it, and stand up.  And he even said his first sentence, “turn on light”. 
• He has 6 teeth now and says “chew” as he chews all of his food.  At dinner, when we are all eating the same thing, he says “cheers” and we have to all touch the food we are eating together and then take a bite.  He eats all the same foods we do, 3 meals a day, with a few snacks in between, and whole milk from a cup about 3 times a day.
• He still takes 2 naps a day and sleeps from 8:30pm – 7:30am.  We pray every night before bed and he waits so patiently for me to get to the end and say “In Jesus’ name we pray” so that he can yell “AMEN!”
• He’s really into books and coloring right now…and trucks which has never changed.  He absolutely loves to play with real keys.  He crawls around the house carrying the keys saying “Teys, bye-bye, vroom-vroom” and then he’ll stop and pretend like he’s using the key to unlock something, he’ll stick the key in a whole and say “teys, lock, turn it”. 
• His motor skills are coming along…climbing is his new favorite thing to do and he is slowly but surely showing signs of learning how to walk.  I’m glad that God made him small because it’s hard to carry a 16 month old everywhere!  Not sure what we’ll do when he does start walking.  Walking = shoes and this boy has been barefoot his entire life!  He always tells you what he’s doing, if he’s crawling he’s saying “crawwwwl” if he’s walking along the furniture he’ll say “vaaalk” if he’s climbing he’ll say “climb” and if he wants to get down he’ll say “fee fuss” translation: feet first!
• He’s girl crazy, ALREADY!  On our last shopping trip, he spotted a little girl and proceeded to yell “Girl! Girl! Girl!” and point and make the biggest scene leaving me no choice but to bring him over to meet the little girl.  Then he wanted me to follow her around the store!  Whenever there is a cell phone in sight he puts it up to his ear and say “Loooow” translation: hello, I say “Ryder who is it??” He says “Kayka” translation: Mikayla! It’s always Mikayla.  Unless he’s at the babysitter, then it’s Mama!

This month has been all about language…he catches us off guard all the time with the things he says and how well he is putting things together.  There is never a day that he doesn’t bring a smile to our face and those all around him.  Here’s to another month :-)

The Evolution Continues…

The evolution of Ryder’s hair that is!  I can’t believe that the last time we left off, this is what his hair looked like:

Oh how far we have come!  Let’s continue this journey…

Hair continued to grow in every direction:

But was still manageable when we went out in public:

And started to actually look like we had cut it into the perfect little boy cut:

But then…it grew over his ears!

Which is when most parents would insist on getting their child’s hair cut!  But not us…we just let it grow wild:

And continued our “swoop” trick when we needed it to look presentable:

Some people pay to get hairstyles like this:

Not Ryder, his is au naturale baby!

Okay, so things started to get a little crazy, time to try a new part:

Much better!  A little less preppy, a lot more skater dude!  He’s so versatile.

But the bed head was absolutely out of control!

Desperate times call for desperate measures.  We had to pull out some new tricks, like the “hair pusher backer” during play time:

Adding a new product to our line – Hair Gel after bath time:

Sunglasses when out doors:

And (don’t kill us when you get older Ryder) we even have to resort to the Bam-Bam look:

And a hair curler!!

Anything to keep it out of his eyes, because it just kept getting longer:

And curlier (the one curl he used to have turned into about 5)

And Longer:

And curlier (which turned into about 10):

Until it finally reached the point where it could be pushed behind the ears:

And manipulated to stay out of the eyes:

Who knows what will come of this beautiful:

Blonde:

Long, flowing, full head of hair:

But we certainly aren’t ready to cut it!  I apologize if anyone thought that’s where this post was headed.  Boys with long hair are cool!

Just ask two of Ryder’s Grandfathers:

Ryder’s Daddy:

The only other little boy we know of named Ryder (Kate Hudson’s son):

And Bret Michaels!  Because A) He’s a rockstar!  B) He survived a brain hemorrhage just like Ryder! and C) he recovered from it, just like Ryder’s going to!

So, it just makes sense for Ryder to have long hair! 

Our new motto: Long Hair, Don’t Care!

Flashback Friday

After seeing the picture of Lindsay all snuggled up with Madalynn on her blog this morning, I knew exactly what I wanted to flashback to today!

 

This picture melts my insides, I can remember so clearly how good it felt to have this little tiny bundle of warmth laying against me.  He felt so secure laying on my chest and would sleep so soundly, what he didn’t realize was how mutual that feeling was!  Love (and miss!)that little newborn baby!

Moving Forward

Well now that I’ve had a chance to process all of the newest information and get back into my happy place, I can talk about where we are in Ryder’s Road to Recovery!  Buckle up, it’s a bumpy ride!

Work: The first thing that was bothering me last week was the fact that I really wanted to cut back my hours at work to give myself some breathing room.  It would be nice to not have to rush to/from appointments all the time and actually have some time to think about our next move before making it.  Unfortunately, I didn’t get my way, and the only solution we were able to come to was for me to use FMLA (the family medical leave act) to take leave to get Ryder to his appointments…nothing extra!  Rush, rush, rush (no breathing allowed).

Insurance:  The insurance company is not budging on only giving us 90 days of therapy per condition, per lifetime, and they called last week letting me know that August 20th was going to be the official end date.  Thank you insurance company for being so thoughtful and understanding.

State:  I had to make the tough decision to go ahead and file for Medicaid for Ryder.  We make too much money to qualify, but there is some ECDC waiver that we are desperately trying to get him approved for.  We are currently on the waiting list for an assessment but I have filled out the 500 pieces of paper it requires…so now we just have to wait.  If he gets approved (please pray that he does) it will pay for everything our insurance doesn’t cover: co-pays, out of network providers, THERAPY!!!  This means he would be able to get all the therapy he truly needs and it would be paid for.  They will even retro this for the past 3 months and we could possibly be reimbursed some of the expenses we have paid…let me tell you, $40/appt adds up fast! 

Therapy:  This was probably the hardest thing that I’ve had to deal with thus far, we had an Early Intervention therapist coming to our house once a week since Ryder was 9 months old (as you all already know).  I was up front with them and told them that my Insurance was only going to give Ryder 90 days of private therapy so I sought out additional services and I was very excited to see how all of the therapy (the old and the new) was going to further his recovery, blah blah.  Well, would you know that I got a call from their office saying that they would not agree to see Ryder anymore because they don’t take the “more is better approach”.  Yes, these are the same people that have been here with us every step of the way, they are the ones who told me I needed to get a diagnosis, were there when I got it, helped him learn to sit and crawl and taught him sign language and laughed with me and cried with me and I welcomed them into my home!  And just like that, done.  And they haven’t been back since.  I’m sorry, but I thought we were all working towards one goal, to help Ryder, how could more therapy NOT help him?!  Look how far he has come with just the one session a week!  They said I had to make a choice, them or Children’s…and as you can see I chose Children’s.  I hope I did the right thing.

Count to 10 (1,2,3,4,5…) Breathe….Okay, I’m back to my happy place.

As I said, we are moving forward!  I really believe that I made the right choice for Ryder.  Yes, it was convenient that they came to our home, and yes we were already so comfortable with them.  BUT, they only offered one session of OT a week.  At Children’s he has Occupational Therapy AND Physical Therapy and was recommended for 4 sessions a week.  They have all the latest and greatest equipment and resources and Ryder LOVES it there.  He starts screaming “play! play! play!” from his carseat as soon as we pull into the parking lot.   AND, we got accepted into a therapy center that is closer to our home (it’s now a 1 hr drive instead of 2) and absolutely love both his Physical Therapist and Occupational Therapist that we will see regularly on Thursday’s and Friday’s.  They are so good with Ryder and he has come so far already in just the few weeks he has been there. 

The first week we worked on climbing, and…see for yourself:

Yup, we have a climber!  And since he mastered that skill we have been hard at work on walking!  Here he is pushing his stool down the hall with his therapist to get to his bowls of goldfish:

 

How cute is that?  They are so good with him, it amazes me!  And it works!  This was him at Nana’s house on my lunch break yesterday:

How’s that for moving forward??  I’m speechless watching him progress this fast.  I have to give a special shout-out to his daytime therapists Madeline & Cameron (as seen in the video).  Having them at Nana’s for the summer is really giving him that extra motivation to get up and get moving!  He wants to keep up with them so bad and they really push him…I think by the end of the summer we just might have a walker! 

So as you can see, it’s a rollercoaster, we’re up and we’re down, but I wouldn’t take back one second of this crazy ride because it’s all for my little rockstar who is having a blast and loving life!  As long as we can keep moving forward, I’m good! ;-)

Play Date

On the way home from camping, we (Ashley, Madison, and Me):

Decided to get our kids (Lila, Adriana, And Ryder):

together for a play date!  I’m so glad we did because the kids loved playing together.  They were all over the place, here’s a glimpse into a little bit of the action:

Ryder was the youngest, so he took a little bit of a beating from the girls, but he was a good sport about it.  Next time he’s gonna have to tell his wingman Carter to come over to distract the ladies so he can catch a little break from all the domestic disputes!