in Charley

how’s Charley?

Choosing dinner

Choosing dinner

Let’s talk about Charley.

This kid is 4 months shy of 5 years old, and an absolute joy. If you say “cheese!” he drops everything and poses with the biggest grin you’ve ever seen. He tickles back. He gets back up after every fall, and he falls a lot. Unless there’s a bump on his head, on his way back up he’s smiling and determined. He’s got stronger abs than I do.

Charley has had, when compared to other kids his age, a tough coming up. He spent 7 months in the NICU at All Children’s in St Pete (we love you, ACH!), and was on oxygen for another 5 months when he finally did come home. We barely went anywhere with him – it required lugging an oxygen tank connected to his face with a tube and a nasal cannula, and we spent more time explaining than doing anything else when we were out. Not to mention having the entire attention of every single person we passed.

He didn’t eat for years by mouth, and still has a MIC-KEY button on his stomach and gets his feeds pumped in. He’s getting better now – having his tonsils removed helped this year – but the doctors think it will be another couple years before he’s fully eating by mouth and can have the button removed.

Charley’s legs hurt all the time. He’s got mild cerebral palsy, which causes tightening of the muscles. Luckily for him, he retains most of his muscle flexibility, but his legs are the worst. He’s learning to walk still, at 4, but it’s made tough by how tight those muscles are – he has to walk everywhere on tip toes. We’ve tried leg braces, but are now looking into Botox injections into the muscle to calm it down. Apparently it works well. If it doesn’t, in a year or two he may need surgery to help keep those feet flat. We’re hoping to avoid that – and you can see he’s walking much better and farther than ever.

Playing some golf with Brighthouse

Playing some golf with Brighthouse

Look at him walking!

Look at him walking!

Still, Charley smiles constantly. He is behind in many ways, but not when it comes to joy. He dances when music comes on. He’s singing along now, and loves to shout from the back seat which direction he wants us to turn at every red light. When a truck stops in front of us, Charley yells “Go around it!” He takes pictures of himself on every iDevice he gets his hands on, and then closes all the apps out by double-clicking the home button and swiping up on all the open apps.

He laughs a lot. Robyn knows his ticklish spots, and gets him every day. He will laugh for a good while then say “stop it!” He can tell you what color our cars are by memory, and knows the directions to Rocket Fizz – our favorite local candy store. He loves Mickey Mouse, Buzz Lightyear, and Magic School Bus.

We have learned a lot from Charley these nearly 5 years. He, like us, smiles through pain. He is strong and caring and curious, and determined despite constant frustrations his own body forces on him. He knows other kids are walking better, and you can tell the days it’s frustrating to him. Still, he gets up every time he falls, and asks for help or tries again.

He helps mama brush her teeth, and is starting to make jokes (although I don’t think he always know they’re funny, ha) and “say the darndest things.” Some of my favorite moments with him are Saturday mornings cuddling on the couch watching a movie while he’s getting his morning feed. Or watching him wrestle our boxer, Jack, who is the picture of patience and the perfect dog for a 4 year old. When Charles moves back in, I am sure the two of them will continue to have a great relationship like they have had.

Robyn works hard on Charley – he is a lot of work. Though he makes it a pleasure to do, he requires hip x-rays, neurosurgeon updates (for the shunt in his brain which will stay there for life), gastroenterologist visits (to check his MIC-KEY and how he’s eating), swallow studies, physical therapy weekly, speech therapy weekly, occupational therapy weekly, eye dr appts, and a host of other specialists and professionals helping us get him caught up. He may never be the fastest runner, but he will be the most determined. Our team of care professionals seem to think by the time Charley is 7 or so, you won’t be able to tell he was any different than other kids. Well, as far as development goes – obviously he’s much cooler. 😉 It used to be hard to believe that – he seemed so far behind. But lately, we’re constantly amazed at what he knows and how much he’s growing. He’s going to continue being incredible.

You deserved a glimpse of the boy Charley has become, and is becoming. Robyn texted me earlier saying “it’s time for another Charley update!” She was right. Charley is a smile and joy. We love every minute of growing with him.

Learning guitar

Learning guitar

Daddy is weird

Daddy is weird

New car?!

Our friend is on that poster!!! Go Hyundai

Peace!

Peace!

Pushing the stroller at Disney

Pushing the stroller at Disney

Fun at Disney

Fun at Disney

Mickey and Minnie!

Mickey and Minnie!

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15 Comments

  1. He is precious!! An adorable, strong, sweet little fighter. I hate that he has to work so hard but love that it doesn’t slow him down a bit. This is true for a couple of our four children as well. The smile on his face really says it all, good job mom and dad!

  2. Love the updates! What a joy he is. I was smiling huge at all of his pictures!
    Keep up the great work everybody! He’s awesome!

  3. I love this update! I was one of his nurses a couple of years ago, I can’t believe how grown up “baybeh Chahleh” is! (That’s what I’d always call him) and I still say buh bye like he used to. I miss him and that smile!

  4. OMGoodness!!!! I can’t believe how big he is. Glad he is doing so well, and so blessed that PSA allowed me the opportunity to know your family.

  5. I LOVE his smile. Saoirse would be just about his age. His joy and happiness makes me think of her, as she was a smile-through-everything kid too. I’m sure he will grow up to be amazing – just like his mum and dad!

  6. He’s a doll, Robyn! I really admire you and your husband and the work you are doing. You guys are amazing. Take care of yourself darlin…

  7. I wonder if you would leave Charley with me now, Robyn, without a hundred million instructions that scared me into just staring at him the whole time, afraid that I’d break him! He DOES deserve his own blog post, ‘cos he rocks, is an amazing and detrrmined fighter, is persistent and the biggest lover and cuddlier. We have watched you two work and fight so hard for him…you all three amaze me. Love and hugs!

  8. I love seeing Charley walk, I mean run around at the chapel 🙂 Seeing his big smile just fills my heart with joy!!!! Also to know that he has the Greatest parents in the world is also heart warming!!! God Bless You All!!!!

  9. Beautiful post, Kyle. As I read, I can’t help but imagine how our Father looks at us each day – full of love and neverending care, aware of our imperfections but willing to sacrifice everything to be close to us… Thank you.