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. :-)  

Ten Months Old

You were not interested in pictures today.
You kept trying to crawl out of the chair & rip off your sticker :)

Wow! This month was full of huge developments, again! And the best part is that I'm done with school now so I get to spend SO much more time with you! This summer is already off to a fun start! :-)

 

 

You started off the month pulling up to your knees, but quickly figured how to pull up to a standing position. Not too soon after that you were cruising around the table, along the couch, from the couch to the table to the ottomans, on the walls, fireplace...practically everything! As long as you have something to hold onto, you'll try to pull up and walk along it. Of course when you're not practicing walking (which is totally adorable) you're crawling all over the place. You also started to figure out how to climb on and over things like toys, you little step stool, Grandma's stairs from her plant room to the kitchen, Mommy & Daddy's feet/legs, etc.

You LOVE Ozzie...and he loves you, too!!! (Archie is still terrified of you and keeps his distance) You squeal with excitement anytime he's near, which is pretty much all the time because he'll follow us from room to room, or you'll chase after him. He's so good and patient with you when you screech in his face, tug his fur and ears and 'pat' (smack) him. He typically meows when you first touch him which gets you even more riled up and its so cute to watch. He rubs on you when he walks by and lays down near you wherever you're playing. He'd probably sleep with you at night if we let him, but we'll wait til you're a bit older and in a big girl bed for that. :)

Captured this picture about two seconds too late - you were laying
your head on Ozzie's back legs & his head was down on the cat bed :)

This month we really started giving a lot more food because you were having so much trouble sleeping for a few weeks and you weren't nursing as well. Once we increased your food intake during the day, your sleeping got better and has been back to normal for a couple weeks now. You're still a distracted nurser, but have gotten much better as the month has gone on, especially now that I'm home to feed you whenever you'd like.

Took the Beetle Walker out for a drive one summer afternoon.
Its so cute watching you cruise around in it :)

Along with your food now, we've been giving you a sippy cup with water to get you used to taking a cup. You picked up on them very quickly and you look so grown up drinking out of it all by yourself now. Your doctor also recommended the water to help with your oral health, to help keep those five teeth clean while/after eating. Speaking of teeth, the two next to your top teeth decided to start coming in at the same time which was not fun for you, but you were a trooper. One has cut through and the other one is almost there! Lots of drool came with cutting those two teeth, too.

Finally, Daddy and I are so amazed by how smart you are and how much you understand already. You know what the word 'no' means and give such a pathetic pouty lip when we break your heart when you can't eat the cat food or go in the kitchen when Daddy's working. You wave when we say 'hi', 'bye-bye' and 'ni-night'. You've just recently started signing 'more' when you're eating and you can finally clap your hands together (and make them touch) while you say 'yay'. You haven't said any real words yet, but you are talking constantly. Lots of 'baba', 'pff', 'dada', 'yaya', 'mama', any combination of these and screeching. You also love to repeat/imitate anything we say...even my coughing, which is really cute.

This month flew by, and I know the next two will, too! You're so close to being ONE, so close to walking...it's so fun!! Mommy and Daddy love you so much!!

Nine Months Old

3/4 of a year old! Where has time gone?

**Unfortunately, we've been so busy, I never fully finished this month's post. So, I'll quickly comment on the list of things I was going to elaborate on from this month... since you're closer to ten months now :)

Stages of crawling - big developmental milestone for you this month was crawling. Army crawling, to sitting and scooting, to working on getting your knees under you.

Teeth - you have two on the bottom and one on top

Blowing raspberries = drooling mess :)

Family pictures - they were mostly of you, but they turned out to be so adorable!

Great Strides DeKalb - our first Great Strides of the season

Pulling up - you figured out how to hold onto things (mostly our table in the living room) and get onto your knees

Not sleeping through the night - you started waking up 2-3 times a night starving - I think the combination of teeth, being more mobile and disinterest in nursing led you to waking in the middle of the night to eat

Touching Archie :) - its always quick and its rare, but it has happened a handful of times

Zoo - after we got your pictures taken, we went to the zoo and you loved it!

More new friends - Lila and Brooke - you met baby Lila when she was only a few days old, and we're excited for when we'll be able to meet baby Brooke. :) You'll have to show 'em the ropes!

You're getting to be so busy and I love it! One more month until we're able to spend the summer together! We love you so much Baby Girl!! :-)