Welcoming a New Year

Ok – show of hands, how many of us can’t believe how fast time is flying?! Seriously, the pandemic started in 2020, two years ago? Esh! Maddox will be finishing up 1st grade this spring. And all the songs I grew up with are starting to be “throw back” songs on the radio. Ouch but hey – they’re still good!

Old Fashioned Pictures with my boys for my Bday Present

Everyone told me that it gets worse when you get older. Don’t blink. Breathe in the moments when you can. Take the mental pauses to enjoy the chaos.

I believed you all, I did! And I still do! But I didn’t really understand until now. And I still probably don’t really get it. I just know that my little dude is growing up way to fast. As I was looking at my phone for pictures to share, we cram a lot of things into a small amount of time as a family. It’s just crazy to watch how much he learns and absorbs as a little human.

He’s definitely transitioned out of the toddler stage and has for a few years now. He can read to you and can handle math problems in his head like a whiz! He has a stubbornness that only a Ruh will understand and he will stand up for himself in a strong willed way. He also has a huge heart and cares for anyone around him.

Our family and friends still continue to be our rock. When we’re having a bad day, we can call up our mini village to have the smile brought back.

Sports have taken on a big role in Maddox’s young life and that hasn’t changed yet. Maddox earned his Little Ninja Green Belt and transitioned to Junior Achiever’s program where he will start working on the basics to start the black belt program. We wrapped up the flag football season and now we are giving Hockey a try. We grew up in a small town that didn’t offer hockey so this is all new to us as parents. Go Little Rockstar.

The month of December flew by with all the activities that come along with Christmas. Santa was a household name for us this year and the magic of Christmas is alive. We built gingerbread houses, decorated Christmas cookies, saw a ton of lights and visited Santa to share the wish list.

We celebrated Ollie’s birthday party in December. So much fun at a trampoline park!

At the end of November, Maddox had his CF follow up appointment and this was the big appointment of the year with chest xrays and blood draws. Its the appointment I dread every year.

This year for the blood draw, we tried something different to help him get through these draws. They added a cream to help with the pain of the actual blood draw and the kid barely cried, which is such a huge relief as we have at least two more blood draws in the next 6 months.

He’s healthy and Trikafta has been interesting. He hasn’t been sick and he isn’t going backwards in his numbers. But they aren’t going up either.

Weight gain is STILL our biggest issue. Even rocking Daddy’s home made sloppy joes, he just isn’t gaining the weight which is still my biggest worry for him.

His Vitamin D is still lower than they like but that’s always been low for him.

We are still rocking his vest treatment every day, twice a day and his nebs at night. He has aced how to swallow his Trikafta with the help of his applesauce pouches.

For now, we work to keep him healthy as best as we can while still being a kid.

During vest in his bunker

In 2022, we have goals set up as a family and I have my own goals. One of those being the best advocate that I can be for him, whether it’s dealing with his medications, his appointments, treatment plans or with the CF Advocacy group. 2022 is all about Clarity for Me. I can’t wait to see what the next 11.5 months will bring! Buckle up as I’m sure it will be interesting for sure.

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