Quick little update while Grammie’s busy with her super-annoying charting stuff – then it’s back to our awesome playtime fun and all the giggles we’ve got planned together!
For those who don’t know me yet, I’m Zayden. I’m almost 11 months old now, and I’ve got Congenital Myotonic Dystrophy Type 1 (CDM1). Grammie’s my voice for now since I’m still working on learning how to do all the talking myself. I’m making progress every single day, learning cool new things, and breaking a lot of the “rules” doctors and specialists usually think apply to kids like me. Turns out, I’ve got my very own unique way of doing things – and I like it that way.
Grammie always reminds me that no one else gets to decide what my limits are except me – but only after I’ve done everything I can to push through whatever’s challenging me that day. So every single day, I’ve got an amazing team – my nurses, my PT, my OT, my developmental buddies, Grampa, Mommy, Daddy, and of course, Grammie – all working together to help me master new and exciting skills. They’re all super encouraging and cheer me on as I tackle each goal.
Guess what? I’ve got some exciting news – I can blow kisses now! And I’ve even figured out how to move my head to “kiss back” whenever someone gives me a sweet kiss on my cheek or nose. Grammie calls those “Angel kisses,” and they always make me smile, even if I’m tired. Sometimes she gets a little carried away and gives me so many kisses I have to push her back – it’s just a lot for my little face to handle all at once! Oh, and you know what else? Grammie says I even blow kisses in my sleep sometimes. She thinks my brain’s practicing really hard to make sure I don’t forget how to do it when I wake up. Isn’t that funny?
Big news from last Friday: I got my amazing brand-new medical stroller! It’s got this super cool platform and head support system that let me sit up just right, which makes me really happy. I’m loving it so much that I actually get a little annoyed whenever someone tries to take me out of it – but Grammie always promises I’ll get more time in it later, so I usually forgive her pretty quickly. It’s the best because it even comes with a tray where people can put my toys while I play. How awesome is that?
Oh, and guess what else? Ms. Dawn got me a mirror so I can check myself out while I’m busy playing. It’s kind of fun to see my reflection whenever I want! And last weekend, the Easter Bunny stopped by with some really fun surprises – he brought me bubbles and the cutest little orange bunny ever. I love running my tiny hands over his soft ears, and his legs are the perfect size for grabbing and moving him all around. He’s super light, so I can pick him up and move him side to side like an absolute pro. My PT says I’m doing an awesome job with my midline and cross-body stretches, which makes me feel pretty proud! My dancing duck is another one of my favorites – I’ve figured out how to grab his wings so he can’t waddle away from me anymore. Doesn’t matter if I’m using one hand or both, I’ve totally got him under control now.
Oh, and one more thing – Grammie says I’m a little trickster because I’ve figured out how to set off my monitor alarms whenever I feel like it. She’s not quite sure if I’m just messing with everyone to get some extra attention, but I know the real reason. It’s because I love seeing how fast everybody comes running when it happens! It’s kind of like my own little secret game.
Okay, Grammie is done with her pesky charting, so I'm out of here for more play time with Grammie. I'm so excited and can't help but wonder what she has planned for us now. See you all later.
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