4.24.2014

Throwback Thursday :: The First Time

My boy turned FIVE on Sunday.  I thought it was pretty special for a little miracle boy to have a birthday on Easter.    It was a great day to rejoice because he and He are alive.  My cup runneth over.  

In true Shannon fashion I have a birthday blog post in my head but have not found the time to sit and put it on "paper."  Eventually it will come.  It's one of my New Year's resolutions that I haven't started yet.  

I realized this morning though, as I looked at the date in the top corner of my devotion, that today is April 24.  Forever that will be a date full of emotion because today, five years ago, when our sweet boy was four days old, we got to hold him in our arms for the very first time.  It was only for a few short minutes, but those minutes carried us through a whole lot of really long days afterward. 


I think these photos will bring me to tears for the rest of my life.  It's hard when you can't hold your baby, but oh how thankful I am to still be able to hold this baby.  Five uncertain years later and I still get to hold him.  

Thank you Jesus, You, and he, are ALIVE!

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3.20.2014

Learning

We're learning a lot these days.  The biggest learning lately seems to be happening on the baseball field, although Derrick isn't the only one learning from this whole experience.

Tonight at the end of practice the coach had them run the bases.  The first two times Derrick crossed home plate (well, he didn't actually cross...we're working on that concept) he had a huge smile on his face.  The third time he was struggling some.  By the fourth trip of non-stop running around the bases my boy had slowed down a good bit.  He was the only kid out there still making his way around.  The rest of his team had finished and he was rounding the corner of first base, but he kept trucking along.  Those little legs were moving and his arms were pumping.  I could see the determination on his face...eyes straight ahead, tongue poking out...that's D's determined face.  He was going to make it around just like every other one of his teammates. 

And he did.

And I was in tears as he did it.

It took every ounce of control I had not call him back as he started that fourth lap.  As soon as his team did their little huddle I ran out on the field and asked him if he was ok.  He was opening his drink and said, "I'm tired!"  Nothing about being out of breath, nothing really at all.  I think more than anything his legs were probably pooped because he's never run that much in his life.

I am so proud of how much effort he's putting into baseball.  He really loves it.  He listens to his coaches, he tries hard and he does everything the other kids do, even though he's always the last one finished.  He's learning the concepts of the game and what it means to be on a team, and I'm learning how to step back and trust him a little bit.  I'm learning to trust him to listen to his own body instead of rushing in and limiting him.  It's hard though.  I want to see him succeed more than any person in this world, and I don't want to hold him back or embarrass him because I'm afraid he can't do it.  Because as he proved to me tonight, he can.  He's not the fastest but by golly he's the most determined.  And I think that may be even better.

They had their Opening Day game Saturday (which was hilarious, by the way!).  I took my big camera, pulled it out at the beginning of the game and realized I had no camera card.  Ugh!  Crappy phone pics it had to be...


And speaking of learning...this priss has now decided she should be in charge of her outfits and insisted on this ensemble this morning.  She's such a mess. 
I'm trying to learn to let go a little there too, but we have some color coordinating lessons to go over.  :) 

Happy first day of spring!  Bring on the sunshine!!

3.19.2014

A New Normal?!

Yesterday was Derrick's three month cardiologist check up.  He woke up in kind of a serious mood.  

His sats were 92 at first, then popped up to a whopping 96!  We're still thinking his fenestration has closed on it's own, so that's great news!

He had an EKG which also came back very good!  Can't you see the good news all over his face?

Derrick gained a whole 1.4 pounds over the past three months, which puts him at 31.4 pounds now!  He's also just over 39 inches tall, which meets a mega goal we've had for a long time.  We have a trip to DollyWood coming up soon that he's been "eating" for, and he officially met the mark!  Now he thinks he doesn't have to eat anymore.  :)

Since we left Jenny Kate at home with Papaw, we took D to Frankie's to cash in on a gift card to ride go-karts.  He finally got a little excited.  A smile!

Sadly, the go-karts didn't start until noon, but he was completely content to spend his money (and then some) in the arcade.  We spent a lot of time at "Sink It."  It's pretty much a family friendly version of Beer Pong, but they're pretty generous with the tickets for this game and it was fun for all three of us so it was a win-win. Justin and I are way more into winning tickets than the kids are!  Ha!

This little simulator was a big hit.  We let him ride it to see how he liked it since we're heading to DollyWood soon.  He LOVED it!  I think he's ready for some roller coasters! 

Long gone are the days when we could plop him on a game like this and him have fun without us having to pay.  Ha!  The kid can no longer be fooled! 

With the last bit of his money he wanted to win Jen a stuffed animal.  He is seriously so sweet to his sister when he wants to be!  That sweetness even convinced Justin to load a few more dollars on his card to try a few more times....and fail.  But it's the thought, right?!

We had a fun morning with our boy, especially since we got a good report from the doc.  We actually got a see you in SIX months this time!  In the past 5 and a half years a cardiologist has looked at Derrick's heart at least every three months...and now....SIX!!  Holy cow!  I have mixed feelings about going that distance.  I'm so super happy that he's well enough to go that long between visits, but there's that part of me that feels some comfort when his wild little heart is at least listened to more often. 

While we've finally made it to this new "normal" phase of life, we still have some things to watch for and decisions to make.   The Fontan is by no means a final destination.  Yes, it's been our goal for a loooong time, but he's not "finished" yet.  He never will be.  The series of surgeries Derrick has now completed are palliative, which means they relieve symptoms and allow him to have a more normal life, but they are not a cure.  The Fontan has been known to cause liver damage, PLE, plastic bronchitis, and a host of other complications. 

Our goal right now is to stay ahead of the game and do our best to make sure Derrick's quality of life stays as wonderful as it has thus far.  As his parents, it's our responsibility to make sure he's proactively monitored and not wait until a problem presents itself, which often times is a little late in the game.  I know Derrick is held tightly in the hands of our Great Physician, but He has given us great resources here and we want the best for our boy.  Over the next little while we'll be researching and questioning, trying to figure out exactly where we need to go from here.  This is something Justin and I have been discussing for the past year or so, and now feels like the time to figure it all out.  We sure would appreciate your prayers to continue for Derrick and for our next steps for him. 

Gosh, we sure do love this boy to pieces!!



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3.13.2014

Be Still, My Heart


Today is a big day.  

The first practice. 

We have a super excited boy who has been marking the days off the calendar counting down to baseball for two whole months. 

This is it! 


Knock it out of the park, big guy!!  



I promise I'll try not to cry.



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