Monday, May 30, 2016

X-Rays. Compliance. Kalydeco.

On the left: Chest x-ray from January 2013             On the right: Chest x-ray from January 2016
What's the first thing you notice? Be honest...
Fat! And that's a good thing for a CFer. Let me fill you in on the huge difference in these photos.
January 2013 - I was half way through my first year of teaching. I weighed 109lbs, although my lung function was 88% at the time, it wasn't consistently that high. I was showing signs of pre-diabetes, losing weight quickly and not compliant with my treatments. This x-ray is pretty good for a CF adult (24 then). Lungs are pretty clear with mild issues in the upper area of my right lower lobe.
January 2016 - I was into my fourth year of teaching, on Kalydeco for a little over two years, a mommy, 124lbs, and a steady lung function of 88%. I had a normal A1C (aka: no diabetes!) and had been compliant with my treatments for a couple years now. The lung damage was very similar, which is key. Typically, adults with CF slowly lose lung function over years, but that fact that my lung function is even better (now) is quite amazing.
There are two giant factors: Kalydeco and compliance.
When Tim and I got married and talked about starting a family, I became very serious about my health. I didn't want to sit back and let CF slowly destroy my body as it was. I finally took control and started being complaint with all of my medications and treatments. It was only fair for my husband, and then daughter. To this day, I remain complaint with my treatments because they're what keep me alive.
Looking back at blog posts from right before I began taking Kalydeco, I remember that I really didn't want to start it. I didn't want to rely on another drug to keep me healthy. But after realizing, 'what's another pill?!', I figured I'd give it a go. I started Kalydeco August 30, 2013. My lung function the month prior was 77% and I weighed 109lbs. Today, my lung function is 92% and my weight is typically between 124-127lbs. That means, since beginning Kalydeco 2 1/2 years ago my lung function has gone up about 15% and I've gained 15-20lbs! Now if that's not amazing, I don't know what is!! From two little blue pills twice a day!
I plan to continue taking those little blue pills and doing ALL of my treatments every single day...well, until there's a cure!

Sunday, May 8, 2016

One and Three Quarters

21 months, one and 3/4, Almost two!!! What?? How??

Baby Big girl, you're growing and learning right before our eyes, and it's so fun and you're so silly!!

You're starting to display typical toddler behaviors like requesting specific colors of things (green plate for dinner, purple cup, blue spoon, etc) and you prefer blue of everything - thankfully you don't (yet) throw a fit if we don't have something in that color. You're good about picking from what's already there....for now....You're also beginning to test the limits on rules. Your most recent one is screaming. It drives me crazy! I'm hoping it'll pass soon. :)

You're definitely getting smarter every day and I swear your ears are ALWAYS listening to everything that's going on around you because you pick up on everything, or join in on Mommy and Daddy's conversations when we didn't think you were paying attention. You can also count to thirteen and know all of your colors.
And I'm probably jinxing myself for putting this down, but you still are an amazing sleeper at night. You know the routine (jammies, brush teeth, hugs, then bed) and once we get started you follow it through and go down without a fight. We're thinking about transitioning you to a big girl bed this summer, so I'm hoping this routine will help make that a little easier.
Speaking of summer (which is only two short weeks away for us!!), we're also going to try potty training. Now, I say try because I know you're still young, but you've pooped on the potty a couple times and I honestly think you're smart enough to pick up on it, so we're going to give it a shot. If it completely back fires, then so be it, but that's the plan.

Some of your favorite things at the moment include:
  • The color blue! Blue Easter dress, blue "Alayna shoes", blue bike, blue ponies, blue get the idea. If I can't get you to put in a bow or pony, I just have to find a blue one and you'll enthusiastically say, "yeah!"
  • Playing with your babies! You've been carrying around a baby, or three, all day every day for the past few weeks. They eat with you in your high chair, sit next to you in your car seat, sleep tucked under your arms, go ni-night in various places, and get dropped on their heads a lot. Their names include: Pink Baby, Elmo Baby, Dolly (that's at grandma's), White Baby, and all the rest are Other One Baby

You brought home this giant baby from Grandma's and
were mad when it didn't fit with you in your high chair
  • Singing - We sing (or count) while we brush your teeth, all the time in the car, or just while we're playing at home. It's an awesome way to cheer you up or distract you, if need be. Some of your favorites are: Itsy-Bitsy Spider, Wheels on the Bus, Turtle in a Box, ABCs, Row Your Boat, Hurry, Hurry Drive the Fire Truck and One - Two, Buckle My Shoe.

"Wheels on the bus go round & round"
  • The "bi-bary" and Baby Talk - We took this session off of swimming lessons to go back to Baby Talk, which is a little play group one night a week at the library. We sing songs, listen to a story, and play with other kids. You love it! You'll get up on the little stage with the other kids and dance and jump around - its so cute. :)
  • Menards - you get super excited when you hear the song on the radio, you recognize it when we drive by and when we use the bags at home! You're a professional Menards shopper:

I have a feeling this is what our whole summer is going to look like: 

And I can't wait!!!