Thursday, March 8, 2018

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.

Sunday, March 4, 2018

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!)

Friday, February 23, 2018

A Day In The Life- Kindergarten

I wrote a few blog posts about our daily routine when Kaylee was a newbornabout 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:

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

  • 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.

  • 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.

  • 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.

  • 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.

  • 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.

  • 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).

  • 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.

  • Go to bed!

Friday, January 26, 2018


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.

Saturday, January 6, 2018

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.

Friday, December 29, 2017

Lungs Misbehaving

This month has gotten away from me! I am in shock Christmas has come and gone!! This Christmas Eve and Christmas has been one of my very favorite of all time. Having a 5 year old sure makes the holiday season magical! Unfortunately, outside of the holidays things have not been going as magically as I would like.

The past few months I was struggling with colds and allergies (who gets allergies this time of year, seriously?) and despite two rounds of antibiotics I had a really really horrible clinic appointment. Like, rock bottom low. I was heartbroken and utterly shocked. I didn't feel good, but I didn't feel nearly as bad as I did a few years ago with those same numbers. And to make matters worse my last clinic appointment was one of my highest in years...38%. To go from my very best numbers to my very worse in 3 months is heartbreaking. And all that changed was that I got two colds! I wasn't skipping treatments, I wasn't missing medicine, I hadn't given up exercise. So like all things related to my CF it was baffling.

At clinic they took my cultures, ordered a CT and decided to investigate what the heck was going on. What was interesting was my weight was stable, my O2 was fine and other than my horrible pfts I seemed okay. I checked online every single day to check my cultures hoping we would have an answer to my horrible numbers and also hoping the cause wasn't a horrible bug. When my results were posted it stated I had normal flora!!! Wait, what?! That thick greenish yellow sample was normal? I don't think so, but apparently they didn't grow anything interesting and it left us with little info on the next step.

Luckily, my CT was a touch more informative than the sputum sample. Although, again, I was a bit perplexed. The cause of my horrible numbers was plugging! Again?! This happened two years ago, but everything seemed to clear up with Orkambi (among other things). My doctor thinks my asthma is playing a huge part (showed up on my CT) so I started Prednisone in hopes of opening the airways and getting rid of some of the plugs. And to make matters a little more complex just as I am finishing up with prednisone I caught a virus and have been running fevers the past 12 hours and am worried whatever progress I made while using prednisone may be lost due to this nasty virus.

This was not exactly how I pictured ending 2017, but with CF things often do not go according to plan!

Saturday, November 25, 2017

Night Cough Survival

Night cough and CF go hand in hand! I don't know about you, but sometimes my night cough pushes me to the brink of sanity. The thunderous cough that keeps me awake all night, despite my body aching to sleep, always ensures the next day that I will feel like a zombie as I try to make it through the day. There are very few things that can be as aggravating as a cough that just. won't. let. you. sleep. Am I right?

For me, the dreaded night cough can be the cause of so many different CF issues: post nasal drip, lungs that just can't seem to stop clearing mucus, GERD, allergies, and the list goes on. Over the years and with some tips from other CFers I created a mental checklist that I go through while trying to combat my night cough. I figured I would put words on paper because it took me 30 years to come up with this list and thought it may help someone else that is on the brink of sanity because of a CF night cough.

  1. Inhaler: Sometimes this does the trick to open my airways and clear out whatever is causing my cough. Sounds too easy, right? Yeah, it usually isn't this simple.
  2. Cough Drops: Cough drops do nothing to my CF cough, but sometimes when I start coughing due to CF my throat gets irritated and it turns into a constant cough that isn't so much CF related. Or there are times when my cough is due to a cold and this can help. Again,  it isn't usually this simple, but I always try the easy fixes first. 
  3. Snacks: I learned this trick pre-diagnosis when I was a kid and used to sit on the couch at 2am and eat pretzels when my night cough would attack. Something about not being able to cough and swallow food at the same time can be enough to settle a nonstop cough. Weird, but true. Tea may work for some people, but for me it has to be actual food. Between night time cough drops and snacks I am sure my dentist hates me.
  4. Pillow Mountain: This is a tip another CFer gave me. Bare with me because it sounds crazy. Sometimes if my cough is due to sinus issues this does the trick. I sit with my legs crossed. Next, I stack as many pillows as I can into a tall pile right in front of my crossed legs. When the tower is tall enough that it comes at least chest level (but higher is better) I can then drape my body (face first) over them. Basically, I sleep sitting up (slightly hunched forward) with my head leaning forward on the pillows to keep the mucus from draining down my throat. The first time someone suggested this to me I thought they were crazy. But you know what? Coughing all night is even crazier and this trick has allowed me many nights of (slightly uncomfortable) sleep which beats a sleepless night any day!
  5. Vest: I personally don't think the Vest is the best for of airway clearance for me in the waking hours, but I do it because I am stuck doing nebs anyway. However, the vest can be my night cough miracle cure. When I have tried everything to calm my cough and sleep and am at the brink of going crazy I can usually convince myself to move to the living room with my blankets and pillows. I then stap on my vest and set the time to 60 min (the max), and start shaking. My body is usually so exhausted the second my cough stops I fall asleep despite the shaking of the Vest. It can be so hard to drag yourself out of bed, and it can feel so unappealing to shake violently while coughing and trying to sleep, but this set up has seriously saved my sanity more times than I can count.
Can you tell what I have been doing the last few nights? Yup, coughing and all of the above: #1-5.