Just trying to get caught up... yes, her birthday was over a month ago.
Here are some photos from Harlie's 5th birthday party. We had it at The Little Gym because we could tailor it more to what Harlie was allowed to do physically, since her spinal fusion. We kinda didn't follow the rules, exactly, and let her hang from her arms a bit. I wanted to keep the party kinda small. And I wanted to promote some relationship building with her classmates. So, we invited all the girls from her class (most were able to come) and some friends that are about her age. Of course, the boys are Murphy and Cooper.
Can you believe how much shorter she is than everyone?
Aside from Peyton (in the yellow dress) and Cooper and Murphy, of course, all those kids are in kindergarten. And Peyton is three and she's taller than Harlie. Heck, Cooper is only two inches shorter than her. He is totally going to pass her. And that's going to be really weird. At the pool this summer I was asked if Harlie and Cooper were twins. Oh my sweet little girl.
This is the point when we just couldn't tell her no.
But look how happy she is! How could we deny her that on her own birthday?
Monkey see, monkey do...
Harlie signing "bubbles"...
This was the first time she's ever blown out her own candles!!! And I wasn't expecting it, so I didn't capture it on film. Darn it! She really did great! And those of us there that understood what just happened were like, "YAY HARLIE!!!" And I'm sure the kids were like, "What's the big deal? She just blew out her candles." Ahhh, it's the little things.
That PMV (the purple thing on her trach - it allows her to inhale through the trach, but then closes, which forces the air out of her mouth and nose. This allows air to go through the vocal chords, which is how you produce sound) has been AMAZING! We have been working so hard to get her to tolerate it for years and years. And it is finally paying off! She's actually quite loud now. And it allowed her to blow out her candles! And it makes her sneezes sound like the cutest thing you've ever heard! The first time I heard her sneeze while wearing it - I cried. It was the sweetest sound!
And speaking of her PMV, I heard from a representative from their company recently and she wants me to submit a little write up about Harlie and her PMV to be included under their Patient Stories section. YAY! I'm so honored! So, she sent Harlie a little package this week and this is what Harlie did for the first time (thanks to the PMV)....
Thank you so much, Julie! I am so grateful for a product like this! Yet I have a love/hate relationship with the trach. Weird.
Well, hopefully I'll have more posts soon...
Monument Avenue 10K!
3 weeks ago