Monday, February 29, 2016

This One's About CF

Did you know this is a CF blog?! It sure doesn't look like it too much from my recent posts, but I like that. It shows me (and my readers) that CF isn't the only or main part of my life. Either way, here's a quick update on the CF side of things.
  • Tomorrow marks three months of 100% compliance with my treatments!!
  • Last time I posted was after my clinic appointment which went very well. Since then, I've received my blood work and chest x-ray results which came back great. All blood work is fine, A1C is 5.6 (woo hoo!!) and my chest x-ray was unchanged from last time. :-)
  • About two weeks ago I started coming down with what I thought was going to be another chest infection and another round of Cipro. It started on a Thursday/Friday and I felt like crap by Saturday with a nasty, dry cough. I made sure to do extra treatments Friday, Saturday and Sunday to help kick whatever was developing. Thankfully I was also due to start my Cayston, so that was delivered on Saturday. Between the extra treatments and Cayston, I am so happy to say that I was able to fight back and NOT have to go on oral antibiotics!!!
  • I feel this is absolutely attributed to Kalydeco, in my opinion, because it's helping me stay so stable!!
  • This made me so excited for two reasons-
    • 1) I don't like the way Cipro makes me feel sometimes
    • 2) The less oral antibiotics I take, the less resistant my lungs/body become to them, which means they'll be a good option for me longer. Once my body is resistant to oral antibiotics, that's when I have to use IV antibioticsI am very lucky to not be resistant to any medications, especially at this age!!
  • To keep it this way, I have to keep up with my health, but I also need your help! The Cystic Fibrosis Foundation's greatest fundraiser is right around the corner: Great Strides!
    • The money that is raises goes directly to research for new medications and treatments.
    • The more money we raise, the more of a positive impact we can make!
    • My team, Colleen's Friends and Family will be walking in at least two walks this spring - DeKalb (April 16) and Bloomington (May 12).
    • My DeKalb fundraising page is: fightcf.cff.org/goto/dekalb2016
    • I also have an event on Facebook and a link on my Team Facebook page.
    • Finally, take a look at downloading the FREE Great Strides app on your phone. It's super easy to use, has all information you need and has easy ways to update and ask for donations via social media! :)

Monday, February 8, 2016

18 Months Old

A year and a half, how can it be?! I feel like we just celebrated your first birthday, and the last six months have flown by!!


I'm pretty sure I said it in your last post about you being a "full-blown toddler", but I think I was wrong. NOW you're definitely there, tantrums and all. :-)

My little reader
You are transitioning from two naps to one per day, which means you can get quite cranky in the evenings and tend to cry about little things, but usually it's not too hard to distract you with something else. Other than some evenings, you are just the happiest little girl!

Here are some things about you at this age that I just don't want to forget:
    • No more paci!!! We got rid of it the second week of my winter break and it wasn't too bad. The first night I cut the tip off which really pissed you off. So the next night I just didn't give it to you at all. Any time you'd ask for/about it, we'd remind you that pacis were for babies and that you were a big girl. I also had you throw one of them in the garbage, so that helped, too.
    • You're so smart. Sure every parent thinks their child is smart, but I am just amazed by how much you pick up, remember, and recall in the correct context. Ex: family members, animal names and sounds, objects, etc.
    • You talk so much! You're starting to put 2-3 words together and you're usually pretty easy to understand.
    • This is definitely the stage of "monkey-see, monkey-do". You have a ton of language/words on your own, but you also repeat everything - words and actions!
    • You love to read books, especially the ones Aunt Katrina got you for Christmas with the flaps. You also enjoy animal books, dinosaur books, and The Foot Book by Dr. Seuss. One page in there I read it "slllllooooooooowww feeeeet, quick feet" in a slow and quick voice which you love and mimic every time!
    • You're obsessed with "meme" which is what you call chapstick. You like to carry it around constantly and get really mad if we won't let you have it. It drives me crazy and I'm really tempted to get rid of it just like the paci! *Update, out of sight, out of mind for about the last week, yay!
    • You love Ozzie and sometimes Archie ("Itchy"). You have to find them and hug them each night before bed("bet"). Ozzie tends to love you back, but will let you know when you've bothered him a bit too much, Archie still runs past you and keeps his distance as much as possible. We're trying to teach/remind you to be nice ("mice") instead of smacking or pulling his tail. :)
    • If you don't know the name of something you just called it "iss" for this.
    • When you see or hear something that you don't know you say "sat?" for what's that?
    • You don't use the word no and answer yeah ("dah") to every question.
    • You love to sit with me while I'm doing my treatments and taking my medicine ("messies"). You enjoy looking at pictures on my tablet and listening to your voice vibrate.
    • We started swim lessons again in the toddler class and you're doing so well.
    • You know the capital letter A and sometimes O, and you can count to two, and think everything is the color blue. :)
These last few months have flown by and I love this stage!! I love watching you discover new things. I love playing with you and listening to you play. Your imagination is starting to grow - you love playing with Grandma's kitchen and you've started feeding your little baby. I just want to soak up every minute with you because I can't believe how fast you're growing! 


This will be your last "months" post because saying anything over 18 months just sounds weird. You're officially a year and a half...and then I'm sure I'll find myself saying "she'll be two this summer" and "almost two" sooner than I can even believe! We love you so much baby little girl!