So, it's been a really, really long time since I posted anything over here. I don't know if anyone is even still following my blog. But, Hi anyway! I'm here to dust off the cobwebs!
Life is busy. Unbelievably, insanely busy, and I love almost every minute. I don't even know where to start with an update..
The kids are amazing. Ellie is just so phenomenal. I know, I always say she's awesome, but I can't believe the progress she's made this past year. She is rocking life!
She's big, 39" and 39lbs of solid muscle. Ellie has a very atypical build for someone with PWS. Typically, they have low tone, and are squishy (even if they're thin!). Ellie is rock solid. She's got unbelievable upper body strength, and super loves wheelbarrowing around the house. She's in gymnastics class once a week, with drop-ins a couple more times a week. She just started ballet, and highland dance classes. I am doing everything I can to make sure that she continues to be active, and strong!
Her speech has exploded. At the last speech therapy appointment, and the first one since the holiday break, her therapist got super emotional hearing her speak, and witnessing Ellie meeting all her goals! We're really proud. FINALLY, it doesn't seem like we're the only people who can understand her. I consider that a huge win.
|Ellie was Sadness for Halloween!|
If you can believe it, she's starting Kindergarten in September!
She has friends, goes on play dates, goes to birthday parties. She's little Miss Social. She's hilarious, she's serious, she's got such a huge range of emotions. And, at least for now, it seems we have the food issues under control.
We still have night-time bipap ventilation, and we love our nurses who still come 6 nights a week, so that we can sleep. She still gets her daily thyroid meds, and her nightly growth hormone injection. She's a trooper, and she doesn't complain.
Jakob is awesome. He doesn't want me writing about him though, so that's all you get there!
As for me, I spend most of my time baking and decorating cookies. In September, I made the decision (with the full support of my lovely husband) to quit my "real" job, to pursue my passion for cookie art. I LOVE IT.
I honestly never in a million years imagined that I would be able to do what I love every day. But... why not?! The kids have said over and over that they love having me home, even if I'm busy and stressed, and part of #teamnosleep. My business has grown a lot over the past year! I went to CookieCon in Salt Lake City, which was just about the coolest thing I've ever done. And, I went for *myself* BY myself!! The more time goes on, the more I realize that it's extremely important to remember that I matter. I need to do things to make myself happy, so that in turn this happy mama can make her family and friends happy. Moms matter.
The hubs and I have been talking about renovating our two-car garage into a proper kitchen. I envision a space where I can go that's completely separate from the house, but that's still at home. I want room to decorate hundreds of cookies without falling over myself, and I want space to host decorating parties. I am even thinking about offering birthday party decorating sessions... I may have lost my mind. Contacting the city is at the top of my to-do list. Fingers crossed they'll give us the go-ahead. Then comes the expensive part. Lol.
Welcome to 2016!