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