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. :)

Expanding Vocabulary

We went for our first family hike over the weekend :)

You're 13 months old now and finally beginning to say words! Forget the typical mama and dada, you skipped that stage, started with animal sounds and now words. There are some words you can say on your own (below) and you try to repeat a lot of things we say.

Quack, Quack - very high pitch "tat, tat"
Dog sound (and any unknown animal) - "woo, woo"
Moo - "boo"
Bear - growling
Bubbles - "bub-buh" or "buh-bo"
Drink - "dink"
Cup - "pup"
Sit - "tit"
Chip - "tit"
Boo! - "bew"
Cat/Kitty/Ozzie/Archie - "ah-ah" like a meow sound, the first one's high, second one's lower
Just within the last couple days you've been calling Ozzie "Izzy"
The letter A - loud and clear on that one when you point to the A on your door
Boat - "bope"
Book - "boop" (sounds like book with an ending p sound)
Diaper - "by-ber"
"Uh oh"
Kick - "key-key-key"
Up - "up"

You learned the sign for bath and you use it when you hear the shower running, or when you want to get in the tub. You also make an "ahh" sound (that you would make after taking a cold drink on a hot day) when she sees any kind of cup/drink. It's amazing how you went from babbling to repeating so quickly! You rarely sign more & please anymore, unless you're prompted/reminded. I definitely want to teach you more signs to help expand your vocabulary even more though. Every month I feel like "is my favorite stage" because you're just growing up into such a smart and fun little girl!

Back to School

I'm sure many of you parents are so excited to get your children back into school whether its for the routine, structure, or just to get them out of the house. ;) What I don't think parents realize is how much work teachers put in before school even begins and especially during the first month. I LOVE my job and I am so happy to say that I am loving my class this year! This is my fourth year of teaching and my first year in third grade, and so far I'm really enjoying the grade level. We're just finishing up our third week of school and it's going by quick. My students are definitely "pleasers" which is nice and also makes them fairly easy to train. The first month is always focused on rituals, routines and expectations to set the tone for the rest of the school year. Its also filled with assessments galore to evaluate your students' needs and decide who needs what skills the most, where to start teaching, etc. It's overwhelming, it can get stressful and redundant, but it's so critical, important and informative. On top of all this, we started in the middle of August in a school with no air conditioning so it has been HOT.

Anyway, I've been busy to say the least. And I also picked up my first chest infection - pretty sure that's record time! Ugh! But it seems like everyone in the school (staff & students) is either sick, has lice, or a combination of the two, lol. I think I'll take my chest infection over lice! So I'm starting my first oral antibiotics this week in hopes to kick this crap out of my lungs quickly.

Anna is back at Grandma's and loving it! Her and her cousin (he's just over 2) play all day together. By the time her and Tim come home, we typically eat dinner, play for a little bit and then she's heading to bed because she's exhausted. I still have to get her up every morning to eat and get ready - poor, sleepy girl - luckily she's able to fall asleep in the car for the hour drive to Grandma's. I'm sure eventually she'll get used to it again. :-)

One Year Old!

Anna,
You are one now! We had your first birthday party on Saturday and I'd say it was a success even though you were way too tired to even enjoy your cake. :)

Its absolutely crazy how fast your first year of life has gone by! I feel like I could go on and on talking about everything that's happened over the last year, but I'm going to try a different method today.

Favorite things to do:

• Walk everywhere, all the time (except in the grass)
• Push your shopping cart that Daddy made you around the house
• Carry anything (especially clothes) around the house with you while you walk
• Go outside
• "Color" with crayons and sidewalk chalk
• Wear sunglasses

Abilities/Talents:

• Your receptive language is amazing! You're starting to understand simple directions and you're usually good about following them.
• You also know what many objects/actions are and will get/do them when asked.
• You know several animal sounds - doggy, kitty, duck, cow, bear
• You're starting to point to things and trying to say them. Just today you kept pointing at your balloons and saying 'buh'
• You consistently sign more, please, eat, book, and wave for bye-bye/ni-night

You don't like:

• When things are taken away from you or being told no
• Being held/cuddled as much, unless its bedtime
• Being in your car seat for long periods of time
• Getting your diaper changed

Favorite foods:

• Cheese!
• Baked beans
• Peanut butter on toast
• Bananas

The amount you have changed this year is amazing! Although we've had a few bumps in the road, being your mommy has been the most wonderful gift! I cannot wait to watch you grow up, continue to learn, and play with you. You are one of the happiest kids I know and you bring so much joy to our family! Here's to the next year being even more fun than the first! We love you so much baby girl!!!

World Breastfeeding Week

#normalizebreastfeeding

I never thought I'd be one of "those moms" who breastfed her baby until she was a year old, but here we are and I'm so proud!

I'm proud that my "sick" body was able to provide the best for Anna for this long, and that I was able to stick with it during the school year. This would not have been possible without my very supportive husband, Tim​, and my super supportive co-workers (especially Shelley​)!!
I am posting this in honor of World Breastfeeding Week.

I now understand the commitment breastfeeding mothers endure to provide for their babies, but the satisfaction and bond is absolutely worth it! Thank you to my friends & family for supporting us along this journey.

Summer

Wrote this last week & forgot to post, oops! :)

This summer is flying by! Sadly, I'll have to report back to work in just under a month, and to top it off, we're starting an hour earlier this year. But until then, I plan to soak up every minute with my growing baby almost one year old! We've had our fair share of lazy days mixed with busy, fun days this summer.

Anna and I have gone on many walks, stopped at the park numerous times, sang the Itsy Bitsy Spider and Wheels on the Bus (among others) more times than I can count, read many books, gone swimming, played with sidewalk chalk, gone to the zoo, and visited friends & family. Having the summers off being a mom is going to be the best!

Health-wise, I've been feeling much better! I just finished up a round of Cayston which always leaves me feeling good. I have my clinic appointment next week, so I really hope the numbers reflect how I'm feeling. Even though I haven't exercised as much as I probably could/should have, my lungs are feeling clear. And best of all, I haven't had any episodes of hemoptysis since the beginning of June! Yay! I still have no idea why all of those episodes happened, but I'm so glad they've stopped and I hope they stay away for good!

Kalydeco Is Not A Cure

Great, amazing, wonderful things are happening in the CF community, and have been for the last few years. The release of Kalydeco in January 2012, and now Orkambi in the beginning of July. They're making huge, positive impacts on a great deal of the CF population!
Unfortunately, I've heard these medications (more so, Kalydeco) referred to as a cure more times than I would like. They are NOT! They help fix the mutated gene, but do not completely correct/reverse it.

If Kalydeco was a cure:

• My lungs wouldn't be filled with bacteria-infested mucus
• I wouldn't still need to do 30 minutes of Vest twice a day (or more when sick)
• I wouldn't need at least 4 nebulizer treatments everyday
• I wouldn't need to swallow at least 15 digestive enzymes a day
• I wouldn't need several different vitamins and other various pills per day
• I wouldn't need to visit my CF clinic 3 hours away every three-four months
• I wouldn't have had an awful Spring with numerous episodes of hemoptysis
• I wouldn't need annual chest x-rays and blood work
• I wouldn't need a high-fat, high-calorie (watch the carbs & sugars though because you're borderline CF Related Diabetes) diet

I started Kalydeco on August 30, 2013. I expected immediate, dramatic changes when I first started the drug, but didn't notice too much of a change. Even though all of these things are true, I'm very glad that I had an excellent talk with my CF doctor (have I mentioned how much I love her?!) was

Dr. Dowell with Anna
from my clinic appt

reminded today how lucky I am to have Kalydeco and how much it really is positively impacting my life.

• Typically, CF patients exhibit a slow, steady decline in lung function over a few years time. My doctor kindly reminded me today that my lung function has been very stable over the last two years. Even when it declined during the beginning of pregnancy, it shot right back up at the end and has been stable since then.
• I have not had to increase my enzyme dosage which is also common for CF patients, which means my pancreatic function is stable.
• I've slowly and steadily been gaining weight over the last two years. This is one of the positives I have noticed over the last two years and have been very pleased with.
• I had a very easy, healthy pregnancy which may not have been the case without Kalydeco.

Despite not feeling immediate results, I am VERY lucky to be on Kalydeco, and now I can positively answer people when they ask how it's been working for me. I'm very happy to have 'normal' lung function, even if it means doing all of this work to keep it there! I hope it stays like this for a long time. :-)

Current stats

Eleven Months Old

Eleven months...where has time gone?! This has been one of the best months so far because I've been able to spend the whole thing with you!!! Its absolutely fascinating to me how much you understand what we say and how quickly you pick up on things. At the beginning of the month you were crazy about animal books (especially Brown Bear, Brown Bear). After reading them a million times and working on animal sounds, you learned how to growl like a bear! When I ask you to be a bear, or what does a bear say - basically just say 'bear' - you do the cutest little growl! Sometimes you'll mimic a cat, dog and cow, but the bear is your favorite and one that you do almost every time.

You look all around when we ask you where Ozzie is or when we meow; you perk up whenever you hear a dog barking, a bird chirping, or a loud vehicle/truck outside; you know what 'eat' means verbally and through signing; you consistently sign "more please" when you're eating; you know where your toes are; you know what to do with a brush/comb when we say 'brush your hair; you bounce up and down when we say 'dance, dance'...and my absolute favorite is your love of music and singing.

We started going to Baby Talk each week and you love it! You can play with other kids, other cool new toys and you love to sing and do hand motions to the songs. We sing them at home too, and its adorable to see the happiness come across your face when we sing the first few words of a song you know - your face just lights up and your arms start waving.

 

This month you discovered how to purposefully let go of objects. You're learning how to play catch by passing a ball back and forth, which is so cute. You love to put toys and things inside buckets, the bath tub, your toy box, etc. But what's even more exciting is taking things out! Emptying the toy boxes, the laundry baskets, diaper bags...anything you can get your hands on. And of course you don't clean it up, where's the fun in that?!

You've had huge motor developments this month too, especially just within this last week. At the beginning of the month, you were doing so well cruising around the house, or in the driveway, in your Beetle walker, but now you'd much rather not be contained. You're so quick walking around the table/furniture, you pull up on everything and love to walk when holding someone's fingers. Within the last week, you've started letting go of the furniture/wall/etc and standing all by yourself. At first it would only last a second or two, but within a couple days, you were able to clap and swing your arms around before either diving for me, grabbing the wall/couch, or falling to your bottom. Then, on 4th of July, you took your first one/two steps while at Linda & Roger's!! You were standing by yourself and I was sitting on the floor in front of you, and instead of diving for me, you decided to move your foot first! You did this a few more times, one time you moved both feet! It was so exciting!! Since then, you've been taking a step or two when we practice together, and I even saw you do it by yourself to get from one thing to another! Before we know it you'll be running!!

**Tonight, at eleven months, you took your first more steps! We were all in your bedroom taking your monthly pictures on your chair and quilt. I stood you up to get a picture of you standing on the quilt, and you started walking towards me! Luckily Daddy already had the camera up because he was able to get the next time on video! You took about 5-6 steps several times tonight!! We're so proud of you!!!

Another big change this month has been your eating habits. I'm so proud to say that you're still nursing at eleven months old. When I was pregnant with you, I knew I wanted to give breastfeeding a shot, but I didn't set any long-term goals because I didn't want to disappoint myself. Thankfully, we've had a fairly easy journey and are so close to making it to one year! Anyway, you have cut back on how much you nurse during the day, and I'm totally okay with that. You're slowly weaning yourself and I am planning to let you dictate when you'd like to end this journey.

You also love food! There hasn't been anything that you won't eat! You're slowly starting to get annoyed when we feed you baby food on the spoon because you'd much rather be eating finger foods and feeding yourself. I love the you're striving for independence...wonder where you get that trait from?! I like to feed you a thing of baby food first, then I'll give you finger foods, because if I give you finger foods first, there's no way you'll take the baby food off the spoon.

We typically eat our breakfast together. We'll have peanut butter on toast or cinnamon raisin toast with yogurt. Of course you always want my Greek yogurt instead of your own, but I don't mind sharing with you. You've definitely mastered the straw sippy cup and are getting better at the regular kind.

You're slowly losing your 'baby' and becoming a little toddler - it's amazing! We cannot believe we're going to have a ONE year old in just a short month! Let's enjoy every second of it! We love you, baby girl!

Great Strides, Great Strides and More Great Strides

Did I mention it's Great Strides season?! This spring was filled with three Great Strides events for me and it was so awesome!!

DeKalb

Our first event was in DeKalb in April. This one is very special to me because I helped create this walk when we lived there five years ago. It also takes place at the same park where Tim and I got married, so it has lots of sentimental value to me. I loved having Anna there this year and am excited to continuously attend as the years go by and as our family grows and changes. Its fun visiting the town where it all started.

We typically have a smaller team at this event - a few of our friends, my family and Tim's aunt & uncle who live nearby. Even though our team was small, we still raised $450!

Parsons
My second event was actually held at my school. I was lucky enough to have the opportunity to speak to all classrooms about what CF is and how I keep myself healthy on a daily basis.

We did two fundraisers as a school and finished with our own Great Strides Walk on the path around our playground. Each class collected money, but then we also did a school-wide change collection that was much more popular. We had a "Cutest Baby Contest" where I displayed 26 different baby pictures that belonged to different staff members throughout the building. The students put change (some put cash) in the jug of the baby they thought was the cutest. It was so fun and the kids loved it!
The combined total from classroom donations and the Cutest Baby Contest was $597.63! My students brought in the most money to our class so we were able to lead the school in our Great Strides walk. As an entire school, we walked one mile outside. The local newspaper was there to report on our event, and there was also a former student (now in her early 40s) who has CF and has had a double lung transplant who walked with us. (Extra pictures from the paper)

It was an amazing event to bring awareness to the kids about CF and I'm excited to see it hopefully grow into the community over the years.


Bloomington

Our final Great Strides event was in Bloomington which is now our team's biggest location. I even had a few Parsons people come out to support me! Last minute, I was asked to speak before the walk, which I always enjoy doing because I hope to spread some positives about CF and how it is possible to live a 'normal' life despite having a disease. This year, I brought Anna up with me during my speech.

We enjoyed a nice walk with friends and family, then hung out at the park for a little while before leaving to celebrate our nephew's second birthday.

Our team raised a total of $1,695 at this sight!!

Which brings Parsons Owls and Colleen's Friends and Family grand total to:

$2,907.63!!!!

Thank you so much to everyone who shared information about CF, donated and walked with us this year! I am so lucky to have such amazing people in my life. :-)