CF College Scholarships

We all know that CF can come with an insurmountable amount of challenges. Navigating all of those challenges on your own for the first time is no easy feat. Throw college into the mix and it gets even more challenging. Luckily, AbbVie understands that on top of all those challenges money should not be a factor.


If you have CF and are going to be an undergraduate or graduate student (and have CF, of course) for the 2018-2019 academic school year please check out this link below:


https://news.abbvie.com/news/abbvie-is-now-accepting-cf-scholarship-applications-from-students-with-cystic-fibrosis-for-2018-2019-academic-school-year.htm

Scars

Spring was starting to appear in all the trees and flowers, and skies filled with birds. But the chill of winter was lingering and as the day started to fade to evening, Kaylee and I snuggled close together under her covers to stay warm.

Kaylee held the book in her hands and she sounded out words and read the pages to me. A new skill learned in kindergarten. As the evening grew later she started to get weary, "Can you read now?"

I took the book from her hands and sleepily started reading where she left off. She listened quietly for a few moments when her little pointer finger came up and traced the inner parts of my arm. Interrupting our bedtime story she asked,
"Are these freckles mommy?"
I looked to where her little finger hovered over the marks inside my arm. Old PICC line scars that were long forgotten.
"No, those are all the spots that the doctors used to give mommy medicine when her lungs needed help."
"Oh, like your port?"
"Yes, similar to my port."
A few moments passed as she touched each scar, looking intently at each one.
"Look, these spots look like Orion's belt. Your spots make a constellation! How lucky!"

And just like that my scar covered arms became beautiful skies sparkling with stars and constellations.

Our Family Grew

There has been a lot of change going on in our household. I hope to post more about those changes soon, but I wanted to start with one that is coming about 2 weeks late!

Kaylee has spent the last few years begging us for a cat. Two weeks ago we finally gave in and Kaylee's dream came true. We knew going into the search for a cat we didn't want a kitten! After we took home a stray (and quickly adopted her out) when Kaylee was one we swore that if we ever got a pet we would opt for one that was out of that adorable, but oh so naughty kitten/puppy stage. We ended up visiting the SPCA and two local pounds before we found our sweet orange and white tabby. He is 2 years old (they think) and is a ball full of energy! Although he was labeled as a stray at the pound we are certain he was someone's pet before he came to us because he knows not to jump on counters and prefers to be in whichever room is the most occupied.

Kaylee spend a long time thinking about names and finally decided she wanted to name him "polka dot" after the markings on his back. The only problem is that Kaylee thinks "polka dot" is said "coca dot" and so he is now affectionately called, "Kokee" (spelling courtesy of Kaylee and her preference of Ks over Cs).

One last random detail. The first time I did may Vest and nebs he totally freaked out and ran to a bedroom to hide. Now two weeks later he is completely used to it and frequently comes over and sits near (or walks on) me while I do my treatments.

Kaylee Chatter Part 9

I have been so bad at writing down all the funny things Kay says, but here are a few I managed to get on paper.

Kaylee has a boy in her class with Type 1 diabetes. His mom came in to bring awareness to diabetes and explain to the kids what he does to care for his health. A month or so later Kay was asking why people get diabetes. After a quick explanation I then added:
"just like Mason in your class."
Kaylee: "No, Mason doesn't have diabetes he has diabetes awareness!"

After seeing a weathervane on someone's roof,
"Look!! East, South, West, and .....New York!"

"When I grow up I want to have a baby girl. If I have a boys I am going to pass them around to people that want a baby, but don't know how." (yikes!)

A Day In The Life- Kindergarten

I wrote a few blog posts about our daily routine when Kaylee was a newborn, about one year, and again in preschool. I love looking back at the old posts and seeing how much (or little) my day to day life changes as Kaylee gets older. Our life is definitely not very entertaining on paper, but keeping with tradition here is a rough idea of what our day is like this school year:

5:20

• My alarm goes off and I quickly get my bathing suit on, pull on sweats, drink a glass of milk and drive to the gym.
• I swim for about 30 minutes, shower at the gym and come home.

6:30

•  I arrive home from the gym . Sometimes Kay is in bed waiting for me when I get home. Sometimes she crawls in bed with my husband as she waits for me and when I am super lucky she is still asleep!! Regardless, I start my treatments once I get home.

7:00-7:30

• I usually brew a cup of coffee for me and then start breakfast for everyone.
• I also do morning chores like empty the dishwasher, clean the breakfast dishes, and sometimes throw a load of laundry in the wash.
• Kaylee usually likes to draw, color, or read before school. The kid loves lazy mornings,

8:20

• By this point I have usually convinced Kaylee to get dressed, we brush her teeth and I do her hair.

8:40

• Kaylee has to double check her "school list" which is a chart Kaylee made (by drawing rather than writing) in the beginning of the year. It has all the essentials she needs for school including her school folder, water bottle, snack, etc.

9:00

• I drop Kaylee off at school. I always wait in line with her and then walk her to her class. She kisses me goodbye and I leave.

9:10-12:30

• I try to run errands, schedule appointments, and volunteer in her class during this time. When I am sick I try to SLEEP while she is gone which is a huge advantage to Kinder...I can get so much more sleep when sick. A few days a week my husband is home when Kay is at school so we get to spend time together which is really nice.

12:30

• I pick up Kaylee. There is a pretty big group of kids (and parents) that stick around after school to let the kids run around and play in front of the school. We almost always stay for about 30-60 minutes.

1:30-4:30

• We go home and eat lunch, go to the library, go to the park, read books, etc. We really do not have a whole lot of consistency to this part of our day.

4:30-5:30

• I make dinner and Kaylee helps on occasion. Often Kaylee does her homework while I cook so I can help her while she works at the kitchen table.

6:30

• If we eat early then I will do my treatments before Kaylee goes to bed. I much prefer this schedule because sometimes I am so desperate to fall asleep after putting Kay to bed and treatments feel like torture because I am so tired. And if I am not too tired, but my husband is home I prefer spending some alone time with him over spending our alone time doing treatments. However, depending on our afternoon plans I can't always pull this off.

7:30

• Kaylee gets ready for bed. We read every evening. Sometimes she wants to read to me and sometimes we take turns reading to one another.  I tell her a story (which is a tradition we have had for so long now I can't even remember when it started). Finally, I give her a counting challenge. One time when I was in the hospital my husband would count to Kaylee in Spanish until she fell asleep. When I finally got home she wanted me to count to her still so I counted to 20 in Spanish each night for her. Now that she is older I have her count to me (sometimes 1-100, sometimes by 5s or 10s, or I will tell her random numbers like count from 160-190).

8:30

• Kaylee is in bed and I do treatments if I haven't already. Depending on my husband's work schedule I either hang out with him or have a quiet evening to myself.

10:00

• Go to bed!

Unreliable

The first time I was completely blindsided by a bad breakup was in 2010. A few weeks before my planned wedding I got a phone call that I never expected to receive. I was told that my dependable and completely reliable enzymes (Creon) were being removed from the market, never to be used again. This breakup came without warning and I was quickly forced to say goodbye to Creon and hello to Zenpep.

Eventually, I settled in with my new enzymes and soon realized that the new enzymes were an improvement from the old brand. For the past 7 years all has been well.

And then it happened again!

I called to refill my enzymes earlier this week only to hear the pharmacist explain the formulation to Zenpep has changed! What?! Noooo! Seriously, why do they mess with enzymes? I received my new Zenpep today. The Protease was reduced by 5,000 UPS units and Amylase was reduced by 25,000 UPS units! I have no idea what that means for my digestive system, but it isn't really a fun thing to experiment with.  I am hoping this current break up will ultimately be for the better and if not, I hope I find a rebound enzyme soon.

Late Resolutions

There are two things I can always count on when January rolls around. My insurance will suddenly have trouble filling some (or all) of my medicine. And the other is that my gym will suddenly get crowded.

My morning workouts in the winter are ideal. Most of the summer swimmers abandon the pool when the temperatures drop and it is not uncommon for me to have the entire pool to myself. When I am done I have the showers to myself, the changing room to myself and at times it feels like the gym is reserved only for me! Pretty amazing, right?

Everything changes once the new year rolls around and the gym fills with people hoping to fulfill their new years resolutions. The day after New Years (Tuesday) I was bracing myself as I walked into the gym.  I was crossing my fingers there would be a lane open in the pool and a shower available when I was done. The strangest thing happened though, the gym was just as quiet as always. In fact, the rest of the week remained extremely quiet. It was bizarre, but I wasn't complaining because I never had to worry if I would get a lap lane or not.

And then, randomly. on Friday all the people I expected to see right after New Years showed up. The gym was suddenly bustling and every single pool lane filled. It was a complete turn around from the day before. I guess everyone's New Years resolutions started just a little late this year.