There's an awesome woman named Robyn who, with the help of her family, started TinySuperheroes. On her website Robyn states, "TinySuperheroes seeks to empower our little ones — one cape at a time. We donate capes to Extraordinary TinySuperheroes who exemplify strength and determination as they overcome great adversity. Once these Extraordinary TinySuperheroes are comfortable in their new capes, we feature them on our blog, in hopes of giving them a voice, their illness or disability a face, and the world the opportunity to stretch."
Visit the TinySuperheroes blog to read Robyn's take on our little hero. It's great to read his story from another's perspective and even better to raise awareness of CDH.
Showing posts with label Tinysuperheroes. Show all posts
Showing posts with label Tinysuperheroes. Show all posts
Friday, April 12, 2013
Tuesday, March 26, 2013
Life Through Ramsey's Eyes
I've been gently reminded (several times) by one of Ramsey's fellow CDH survivors, that I'm way overdue for an update. Raelyn, this blog's for you! The good news is; no news is good news.
This winter has been virtually uneventful when it comes to his health. He and big brother had a nasty case of Pink eye, and a cold or two…but that's it! No ER visits or asthma scares, life is good! His checkup and X-Ray at CHP also went well. We'll return this summer for his next checkup.
He also had a formal developmental evaluation as part of the DRHEAMS study we're enrolled in. The evaluation, called The Bayley III is a standardized assessment of motor, language, and cognitive development. I don't have the official results yet, but I was told that Ramsey did a bit above average except when it comes to speech. At this point, I'm not concerned about his speech. He could have the same issues even if he wasn't born with CDH. We'll give it a little time, and if we become concerned, we can see if therapy is necessary.
I've been enjoying life through Ramsey's eyes.
I love watching him find joy in simple things. Like taking a bubble batch and letting the water drip slowly on his scarred belly. Like begging, "Cuckie, Cuckie, Cuckie" because he loves Oreos.
I love how he says "Cheese" with his eyes closed...
And watching him discover shadows puppets on the wall...
His puppy impersonations...
...come in handy when he needs to open his mouth for his first trip to the dentist...
He knows how to make a good old mess with ink....
...and mascara.
He loves to color and has the cutest crayon grip ever...
He's fascinated with the simple things and I'm fascinated with him. As he enjoys all of life's little moments, I can't help but think back on this big one....
...and I smile. He's come a long way.
This winter has been virtually uneventful when it comes to his health. He and big brother had a nasty case of Pink eye, and a cold or two…but that's it! No ER visits or asthma scares, life is good! His checkup and X-Ray at CHP also went well. We'll return this summer for his next checkup.
He also had a formal developmental evaluation as part of the DRHEAMS study we're enrolled in. The evaluation, called The Bayley III is a standardized assessment of motor, language, and cognitive development. I don't have the official results yet, but I was told that Ramsey did a bit above average except when it comes to speech. At this point, I'm not concerned about his speech. He could have the same issues even if he wasn't born with CDH. We'll give it a little time, and if we become concerned, we can see if therapy is necessary.
I've been enjoying life through Ramsey's eyes.
I love watching him find joy in simple things. Like taking a bubble batch and letting the water drip slowly on his scarred belly. Like begging, "Cuckie, Cuckie, Cuckie" because he loves Oreos.
I love how he says "Cheese" with his eyes closed...
...come in handy when he needs to open his mouth for his first trip to the dentist...
...and mascara.
He loves to color and has the cutest crayon grip ever...
He enjoys movie time, and after two years, he's finally a cuddler!
He yells "Bye" when it's time to ride off on his horse...
And he still has a love for wearing toy kitchen tongs...
He has perfected the superhero run, and is soon to be featured as a Tiny Superhero. Thanks to them for this awesome cape :)
He's fascinated with the simple things and I'm fascinated with him. As he enjoys all of life's little moments, I can't help but think back on this big one....
...and I smile. He's come a long way.
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