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 antibiotics. I 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! :)

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!

January Clinic Visit

Anna and I arrived home from a successful clinic day just a little while ago....but next time, remind me not to take a toddler on a six-hour round trip. :)

We started our day off around 5:15am, which is typical for us during the week. Tim accidently took the car to work because that's what he's used to, so Anna and I had to take the truck to Bloomington (luckily it's on the way) to switch it for the car. Poor Anna thought we had arrived at our destination and was not very happy with me when she went from one car seat into another. So for the next hour she was fussing and fighting sleep. Finally, she fell asleep and stayed asleep for almost another hour. We were on track to make it to clinic about ten minutes early, until we hit lovely Chicago traffic. Since we were completely stopped, I texted my doctor and let her know we'd be about a half hour late. The traffic ended up clearing quicker than I expected, so that gave us plenty of time to park and get in a diaper change/bathroom break without having to rush to check in.

So happy to be out of the car and in her "chair"

My appointment was pretty uneventful, which the doctor and I both agreed was a good thing. Thankfully, even though I'm not on Cayston right now, my lung function is pretty much the same as last time, at 88%. 😃 I've been lucky enough (so far) to not catch whatever Tim has and all the junk that's going around school. I hope it's able to stay that way these last couple months of winter, but that would be pretty much a miracle.

I talked to Dr. Dowell about getting an Afflo Vest, especially for travel, so she's going to see what she can find out for me before my next appointment. I'm also in the market for a travel nebulizer, one that can be plugged into the car. If anyone uses/knows a good brand, please let me know.

After seeing the doctor, we went to get my labs done and finally, a chest x-ray. I was concerned they wouldn't allow Anna in when I was getting the x-ray which would not allow me to get it, but they were very helpful. They x-ray tech just took her in the stroller behind where she stands and did both x-rays very quickly before Anna realized she couldn't see me. It worked out perfectly.

Anna really was a good sport during all of this at the hospital. She was talking to me more than I expected her to with people around, but of course, just stared at people when they talked to her. :)
Next time I take her though, it'll have to be a time where we come up the night before because that poor girl was so sick of sitting...who could blame her?! Every time we'd stop at a light she would say, "home" because she thought we'd pulled into the driveway; or while driving on the highway, many times she said, "Mommy, out!" As much as I know the doctors like to see her, and I like her to be comfortable with Mommy going to the doctor, I think next time she'll just stay with Grandma!

2015 - A Year of Mommy-ing

This is the 1st picture I took in 2015

This is the last picture I took in 2015 -
Someone loves their Daddy :-)

2015 was an amazing year! Of course it was extremely busy being a mommy, a teacher, a wife and a CF patient, but I wasn't going to let all of that get in the way of it being wonderful. I apologize for neglecting the blog a bit, but I don't have much spare time these days. This last year was filled with lots of family time, but I want more.

This year, 2016, I don't want to set lung function, weight, or exercise goals. I really want to step back from technology a bit - less Facebook, less Instagram, less pictures - just less being attached to my phone. I want to soak up time with our little family and enjoy the moments. Of course I love having all of the pictures to look back on, but sometimes it's just too much.

I've been very lucky to be as healthy as I am, so I really want to take advantage of it and really live this year. We may not go on any spectacular adventures or do crazy, daring things, but I want to be more present in daily life. So that's my goal this year. I hope that a year from now I can reflect and be proud of myself.

As for this blog, I will definitely keep it! I will try to write once or twice a month (or more), and definitely update after CF clinic appointments. I appreciate those of you who (still) read my posts and comment. Reading other CFer's blogs has been very beneficial to me, so I hope to be doing that in return for someone else. I hope this blog gives other CF patients, friends or family members hope that CF is not always such an awful disease. With that said, I'm going to spend more of my time living this amazing life despite CF. Here's to a family, fun-filled year! :-)

Merry Christmas!

From our family to yours,

 

 

Wishing you a very Merry Christmas!!

*Live*Laugh*Love*Breathe*

#CFMama

Growing up with a mom with CF, Anna doesn't think twice about me doing my treatments throughout the day, or when we go somewhere for the weekend, and I love that. Sure, one day she'll realize that not all moms do a Vest or many nebulizers a day, and she'll have questions and may even be embarrassed, but I am prepared to be open and honest with her. But for right now, I am going to cherish her sweet innocence, and company, while I do my treatments every day (even if she does get in the garbage or throw my medicine vials all over the floor).

Anytime Anna is home or awake when I'm doing my treatments, she always has to come check in with me.

It may be for a quick minute to read a book next to me or what silly stuff she's up to:

 

It may be to climb on anything and everything in our hodgepodge office:

Or it may be to sit, shake or do medicine with me:

 

She was saying "ahhh" listening to her voice vibrate

Mommy always has the better medicine ;)

Even when she's playing, I know she's watching me because as soon as I'm done, she'll want to get in my chair and do what mommy's doing.

Just taking a little puff of Dulera

Anna pointed to the chair and said "up". When I sat her in the chair,
she tried to pull the Vest onto herself. After getting it on, she grabbed my
Cayston neb and put it in her mouth so proudly :)

Having a CF mom isn't always going to be easy, but I hope that in her seeing me do my treatments day in and day out it'll teaching her determination, respect for her body, and to see how much I will do to keep myself healthy to be the best mom for her.

15 Months Old

11/8/15

Anna,
Yesterday you turned 15 months old! In some ways that seems so young compared to what you can do because you act so "old" to me. I have to remind myself you're slowly transitioning into a toddler still.

One word to describe you, that we call you all the time is silly! You make us laugh everyday! There is hardly ever a day where you are crabby. You're always so happy, giggling and smiling. :) I hope you never lose your sense of humor and your constant joy.

Here's where you get some of your silly from - Daddy!

The amount you have changed from your first birthday is incredible (although you're probably similar in size!). Your vocabulary has grown exponentially from simple sounds to over 30 words and just recently two words put together like "eat" then "banana". You're starting to say more names including Cole, "Ees" for Aunt Elise and mam-aw for Grandma Dorothy....you refuse to say Liam. Anytime we ask you to repeat Liam, you just say "Co" instead. :)

You with "mam-aw"

 You are walking, and trying to run, all over the place and you climb on everything! You're usually great at climbing up, but the getting down part hasn't come as easy yet. You've learned how to turn your noisy toys off and on, you love to chase the cats (and get in slap fights with Archie), and you spell your name on your door and above your crib before you go to bed each night - right now it's just A-a-a-a...

My two favorite people!

You're a pretty independent and confident little girl when you warm up at new places, and especially when we got to Baby Talk times. You love kids and have started referring to all other children as "baby".

We are so lucky and thankful to have such a sweet little girl to call our daughter! We love you so much!!
~Mommy & Daddy

End of First Quarter

Well, it's the end of the first quarter of school, and I'm beginning my second round of antibiotics this school year. I've felt much worse before starting antis in the past, but with my upcoming doctor's appointment, include a full PFT work up, I figured I'd nip whatever's brewing in there, even if it's just a small infection. It's going around our house right now - all three of us are having chest issues, sinus issues or a combination of both, so better safe than sorry. Nothing a little Cipro and Cayston can't beat.

In other news, I am loving my job this year!! Not that I haven't before, but last year's class was rough (and 5). This year I'm in a different grade level with a bunch of fun kids I've known for a few years, so it's made things very enjoyable despite all of the curriculum changes from the district. I'm very glad to be 'stuck' in this grade level now. :-)

And of course, a little blurb about our crazy little toddler. Yes, you read that correctly, she's practically a full-blown toddler now from talking, to tantrums, to getting into everything, and being so, so silly! I really can't complain when I say tantrums I just mean a five second whine/cry (with the occasional stomping) until she's distracted by something else. Anna's so busy these days trying to figure out how everything works and trying to climb on any surface impossible. We've been so busy and have been too much fun to update the blog. :)