BBS (Bardet-Biedl Syndrome) is a genetic “rare disease” that affects approximately 1 in 250,000 people around the world. It causes all kinds of things to go haywire in the body, including kidney failure, heart problems, obesity, polydactyly (extra digits), and retinal degeneration (blindness). My brave, beautiful, stubborn, strong daughter is one of those 1 in 250,000….
Boy howdy, a lot happened in December. Let’s get to it. Our sweetest ever friends knew Dave didn’t want a lot of hoopla for his bday (back at the end of November), so they figured we could just put together a home-made dinner to celebrate him. His face shows kind of how he felt about…
We are getting so far behind on these “little things” posts so I’m doing this one speedy-quick. Links at the bottom and intermixed in with the pictures if you want more details. Here’s how November went down…it was a nutty month I have to say! We started out with our own, personal “dinner Halloween” where…
It was a jam-packed Thanksgiving day, so bear with me on all these pictures to remember it all! You see, when you decide to have a sealing the day after Thanksgiving, people come. And you squish in a lot of things in a short amount of time because those days of gathering are just as…
Holy cow, I am trying to wrap my head around all that happened last week. I was going to jump right in with the Turkey Trot on Thanksgiving morning (our first big event), but for reference, we need to back up to all the prep first. Because there was a lot of it all jumbled…
Oh man, life is marching on. Here are some things that happened in September, mostly according to my iPhone: Got this awesome picture from my sister-in-law who hosts ALL the cousins who are up in Utah for dinner every first Sunday of the month. Are you kidding me about how awesome she is? And also…
When Lucy’s choir teacher asked me a few weeks ago to tell him more about what’s going on with Lucy, I realized we needed a little teacher meeting. Knowledge is power, and I realized none of her teachers really knew what was going on with this girl. So her “helper” at school set up a…
Let’s take a minute to go back to February for record’s sake. It seems crazy to me that this was only a couple months ago! But there we were, Claire and some cousins went to watch other cousins compete in the state cheer competition: (They did awesome, so proud of them!) We gathered with family…
Gotta squeeze this little things dealio in before the end of January just for principle’s sake. But first of all, I just have to say it’s my future son-in-law’s birthday today and I love him! Carson, I hope you have the best-ever day with your cutie fiance. She is one lucky gal and you’re a…