Friday, June 30, 2017

I coughed up a rock

Sometimes when you have CF weird shit happens that nobody else would understand!

On Monday, my chest felt tight and I kept complaining to my husband that everything in my chest felt really irritated. I thought it felt like allergies, but given the time of year it seemed doubtful. As the day went on my cough become constant, but it was a deep irritated cough which is not at all my typical CF cough and I started to get worried.

Wednesday, we were driving to the river to spend the afternoon on the beach and thank goodness my husband was driving because my cough was so violent, I had to brace myself against the dashboard and each cough brought a set of stars that danced around my vision. Anyone else get that during a bad coughing fit? Of course, Kaylee is so used to my cough she was chattering away as if nothing was happening!

Wednesday night just as I was drifting off to sleep, I was awoken by a cough that felt as if it were coming from the depth of my core. That sounds dramatic, but seriously, I think it came from a part of my lungs that I never knew existed or at least not in the past 15 years. And the next thing I knew I was coughing so hard, I couldn't breath and started choking, and coughing and hoping I wouldn't pass out. And then, my lungs expelled a small rock!

Okay, of course it wasn't a real rock, but holy crap if I didn't know better I would swear it truly was a rock. And to make this gross story even more disgusting, I will point out the obvious! I expelled a plug that was so old and so dry that I can't help, but wonder if it was created before Kaylee. Because I have never in my life had a plug like that.

The next day I felt 100 x better and my irritated lungs calmed down and my nagging cough disappeared. And when I told my family in the morning Kaylee cheered before asking, "Did you take a picture of it?" This kid knows me too well, because of course I took a picture of it. It is not everyday you cough out a plug that was probably around before you met your husband. That little guy has been with me so long that I had to keep a picture keepsake.

Like I said, sometimes shit happens to people with CF that nobody else could possibly understand!

Saturday, June 17, 2017

Why Don't I have CF

Kaylee: "How did you get CF mom?"
Me: Very simple explanation of genetics.
Kaylee: "So why didn't I get CF?"
Me: "Well, mommy gave you one CF gene, but daddy did not give you the gene. You need 2 genes to have CF.
Kaylee: clearly upset, "WHY didn't daddy give me the gene? I want CF just like YOU!"

*a few seconds later*

Kaylee: "Will my kids have CF? Because if they do I will be really jealous!"

Can my daughter always be this naïve and innocent when it comes to my disease? And can I always remain perfect in her eyes? No? I guess I should enjoy it while it lasts.

Monday, June 12, 2017

5 years old

Little Kaylee,

You are 5 years old today! 5 seems like a significant age because you are officially school age! Although I miss carrying you around on my hip, your need to always hold my hand (although you still hold my hand) and witnessing all the first milestones for the baby book I am so enjoying this childhood phase. I feel like a broken record writing these, every year I seem to like your age and motherhood more.

Once upon a time you were my shadow, a mold of myself. Almost everything I liked to do you did too. As you get older you are finding your own interests and they don't always align with mine. My gardening buddy now loves eating from the garden, but not so much in helping sow seeds or tend to the plants. To my slight disgust and extreme pride you have decided that bugs are much more love worthy than plants. Now many children love bugs, but I am not so sure that many children love bugs like you! While I work in the garden you find bugs and you love on them in a way I will never fully understand. You carry them, name them, sing to them, love on them. And when I accidentally stepped on a grasshopper in our yard (which was a happy accident in my opinion given they can be very destructive to the garden) you cried real tears for that bug and you found it especially upsetting because the bug "wasn't even that old." When bugs find their way into our house regardless the type: crane fly, spider, house fly, you claim it as your pet and love on it until mommy or daddy can secretly release (or mush) it.

You have your own sense of fashion and a strong desire to follow these fashion rules which consists mainly of pajamas and non-brushed hair which means you haven't changed much since birth. Your one and only accessory that is an everyday must for you is hair bands around your wrist. I am not sure when or how this started, but I love that your fashion is practical and anytime I need to put my hair up I know where to find a hair band.

I feel so incredibly grateful I was able to be your mother! When I tell you that I am the luckiest mother in the whole world you always respond, "all mother's feel that way!" And maybe all moms do feel that way, but regardless I will go on believing whole heartedly that I truly am the absolute luckiest mother in the world to have the honor of watching you grow and spend my life with you!


Saturday, June 10, 2017

Preschool Graduation

Thursday June 1st was Kaylee's last day of preschool. I have so many mixed feeling about this very short chapter in her life ending. She loved preschool and made a lot of growth which was fun to watch as her parent. She made her first self chosen best friend (who also happened to be the teacher's daughter). She was at a play based school and spent almost 90% of her free choice time in the art room being creative, which was exactly what I wanted for her- the freedom to follow her passion. Throughout the year we watched her become more independent and social and she loved her school experience. I know she is going to miss preschool a lot!

Kaylee was at a parent participation preschool and I was also the class parent which meant I was there a lot! I made so many friends and felt that so many people at the school became like family. Not only did I befriend other parents, I watched all the kids grow over the span of the year and I can tell you all of their favorite colors, which snacks they liked, their favorite preschool activity, and all about their siblings and pets. I bonded with so many of the kids and I will miss them a lot! Although I will admit those 2.5 hour preschool volunteer days (twice a month) sure did wear me out! My mind and soul will miss my volunteer days, but my body may be a little excited for a break! Oh, and getting away fro preschool germs sounds rather nice, this winter (post-Christmas) was a doozy for sickness!

However, there is a part of me that is excited to have my baby to myself again! Summer means more time to be with my girl before she has to go to kindergarten five days a week (sob!). It also means more time for swimming, gardening together, and trying local museums and playdates.

These little ones grow up so very fast and I know that before long I will be writing a post about her first day of kindergarten and this last summer together before "real" school will be a distant memory. I am excited I am here to witness it all and can't wait to see what next year brings for us.

*Since I forgot to update, we finally got called by our first choice school and we got in! Whew, that was a stressful process, but we are guaranteed a spot every year now until she graduates from elementary school.

Monday, June 5, 2017


After three consecutive colds (after a winter of a million viruses) and a fun vacation that ended up leaving me more sleep deprived than a mother of a newborn I finally gave in and called clinic for meds. All the signs of infection were there: night cough, extra reactive airways, way too much mucus for one person to handle. My doctor wanted me to come in for PFTs before prescribing any antibiotics and so the weekend felt very long in the worst way possible.

The past several years I find clinic to be absolutely deflating. As a CFer I am the teacher's pet. I go to all my appointments, I do all my treatments (like seriously, I never miss mostly because if I do I am miserable and it just isn't worth it), I take all my pills 99% of the time (those dang vitamins are the ones that trip me up), I do everything they ask of me and yet I still have really horrible pfts that never seem to improve.

The frustrating aspect is that I often feel like clinic gets the worst of me. The last few times I went to clinic I was just getting over or just starting a cold. Of course, they also get me when I am sick and desperate for medication. The times I feel amazing and everything seems to be going well? Nope, never have a clinic appointment scheduled then. And so sometimes I feel like clinic has a skewed view of my health and here was just another "sick" pft to add to my list of subpar pfts.

When my respiratory therapist showed up, I was not all that excited to see him. He was in a rush and he wasn't his usual talkative self and I wasn't even able to check out my score before he pushed print on the pft machine, handed me the paper and left.

And guess what? Despite feeling bad, my pfts were up! What?! The last several clinics my pfts have gone up 1% each visit. Okay, I know, I know 1% is not clinically significant, but let me tell you something, it is significant to me!! Do you want to know why? My goal in life is to get back to 40% lung function (or as close to it as possible). When I went though a rough patch I fell to the 20s and even though I rebounded (and fell and rebounded a few times) I got stuck at 31% for a very long time. I tried everything to get past 31% and nothing worked, nothing!! Somehow the last few appointments, despite feeling bad, I have been creeping closer and closer to my goal. 31%, 32%, 33%, and today I was 34% even though I was coming in desperate for medication!! See how creeping up 1% at a time without sliding back down can be significant?

Maybe after this tune up I can gain another percentage point or two? Baby steps... baby steps...