Wednesday, April 22, 2015

Toddler Talk Part 6

Language development has been by far my absolute favorite part of watching my daughter grow up. The most fascinating and comical aspect of language development of an almost three year old is how one moment she can use words that seem far beyond her years only to completely botch the very next word that comes out of her mouth. So despite the correct use of words like disgusted, delightful, and homesick she also says the following not so correct sentences/words on a regular basis:

1. "Yummy to my chum chum chummy!"

2. She calls an oven mit a "hand bra"

2. Wrinkly fingers from the bath she calls "crumbly fingers"

3. Excuse me is said, "scoo scream"

4. Whenever she cries and her eyes are full of tears she calls them "blubbly" (like bubble with an extra l)

5. When I got home from the hospital, but was still on IVs we watched the Daniel Tiger where his mom is sick a lot. In the episode Daniel Tiger sings a song, "when you are sick rest is best." Kaylee still loves to sing, "When you're sick rest is rest" which seems a little redundant, but who am I to judge?

Wednesday, April 15, 2015

Allergic To Life

As a teen my dad would always bring me to my CF appointments with a pen and notebook in hand. He would scribble everything the doctor said and keep track of all my stats from the appointment in that notebook much to my horror. "Dad, you don't need to take notes. This isn't school," I would plead, but my scientist father paid no mind to me and kept those books until I started going to appointments alone. And although the notebook was not my style I learned the value of keeping track of my health and trends over the years. So I started a calendar (visual learner much?) and kept track of my PFTs, O2, clinic appointments, and took careful notes of everything important that took place during my appointments on the calendar.

So when April rolled around, only 6 weeks after IVs, and my lungs felt like they completely closed shop leaving me gasping for air I turned to my 2014 calendar. I was wondering how I felt last April when I was only a few months out of the hospital. Sure enough April was my worst month last year. I wrote that although I didn't FEEL sick I was tight! So tight that my lung function plummeted and I was using my inhaler up to seven times a day. There were nights I woke as if I were suffocating and puffed my inhaler until I felt well enough to sleep again.

Exactly a year later the symptoms were the same! I felt so tight my inhaler was glued to my side and I found myself gasping for air as if I were drowning at the smallest of tasks, but besides being short of breath I didn't feel that bad. After April my health improved a lot which led me to believe allergies may have been the culprit. I went out and bought a new allergy pill (to add to my year round Singulair) and within 24 hours I felt a huge improvement. My 7 puffs of Combiovesnt a day was reduced to three or four and my PFTs continued to climb over the next few days. I am still not at baseline, but I am significantly higher than I was before switching allergy pills. It also confirmed that even though my 14 year old self was ashamed of my nerdy dad taking notes as if he were in a lecture hall rather than a tiny clinic room he really knew what he was doing. Sometimes you have to admit that your parents really were right all along!

Sunday, April 12, 2015

Quality Control

I got my first vest at the age of 14. That obnoxiously large Vest shook my chest walls throughout my teens and followed me to multiple dorm rooms, apartments, and even saw the first few years of my marriage. At 28 I finally got an upgraded Vest, not because it was broken (although the timer no longer worked and the peddle sometimes needed a little encouragement to get the thing to start), but because my insurance finally approved it. The new Vest came when I was heavily pregnant, but even with a Vest that couldn't be fully snapped, I was delighted with the much smaller, lighter and programmable Vest.

And then within two years it broke. Just stopped working. So I got a new one. This time with locking hoses (!!!) so that less time was spent popping tubing back into the machine. Although the tubes did wiggle their way out of the machine from time to time I was still excited to get an upgraded version that would make my Vesting experience more enjoyable... err..as enjoyable as sitting in a Vest that violently shakes your chest for 30 minutes can be.

And then with only 200 hours clocked on the machine the new and improved locking hose broke. A little over 6 months and the tube is completely useless. As I wrote "call the Vest company" on my Monday to-do list I couldn't help but think about the old, loud, HEAVY vest that lasted 14 years without a problem which seems to be 12-13 years longer than I can get the newer model to last!

Tuesday, March 24, 2015

Bulk Up Coffee Lovers Recipe

There is this new fad among coffee drinkers. I heard about it several months ago when my dietitian told me about this buttered coffee fad. Another patient had mentioned it to her and she proceeded to mention it to me. Just as I was intrigued but ultimately confused, so was my dietitian. She wasn't sure the recipe or how it even worked, but she knew you blended butter into your coffee. Yes, you read that correctly, butter in coffee! You can imagine why we were both a little confused.

Now the recipe I am sharing is not this buttered coffee, but you can find it on many food blogs including Pioneer Woman's blog under crazy coffee. I tried it myself because butter, oil, coffee and a blender is something I just couldn't NOT try because it is just so weird. My first sip all I could muster was a perplexed, "huh?" As I sipped the last few drops in my mug I was still a little confused by what I was tasting. I still wasn't sure I liked it, but I didn't dislike it. So here is my own new and improved version of this butter-free buttered coffee:

Bulk Up Coffee
8oz fresh brewed coffee
2 T Coconut Oil
2T Half and Half
Put all ingredients and any sweetener you may use in a blender (or if your blender is broken like mine a food processor works, too. Hey, sometimes you have to get creative)
Blend till coffee looks frothy.
Enjoy!
*If you like your coffee HOT then you may need to stick it in the microwave for a few seconds.
**Coconut oil will solidify when cold so putting this coffee over ice isn't an option.

The best part?
Total fat: 34g fat
Total Calories: 200
Add that to your regular high fat/high cal breakfast and your are starting your day off right!

Sunday, March 22, 2015

Toddler Talk Part 5

K got in a fake fight with her rear end the other day. Her rear really wanted a turn painting, but she kept insisting that only people paint and behinds can not. The fight went on for several minutes where they were arguing back and forth. Eventually, K won the fight against her rear end and he..err..she... err, the rear end never got a chance to paint.

Along the lines of talking body, after telling her she needed to listen to her body referring to when she is full or needing to go potty she decided to take it somewhat literally. She now makes her tummy talk on a regular basis and then responds to their needs.
"Mom, my tummy is hungry." Using a high pitched voice as her tummy, "I really need a snack. I am so hungry." Or "My tummy is so thirsty it needs water."
Her other body parts talk too which makes for a lot of high pitched squeaky voices in our house since apparently all her body parts have the same high pitched voice. Recently her brain started talking too.

I called K a wild woman because she was wildly dancing around the living room. She stopped and laughed saying, "MOMMY! I am not a woman I am a girl. DADDY is a woman!" (She also calls me "daddy's husband" She gets really confused about these labels).

Kaylee was coloring with her favorite marker, green, for an unusually long amount of time. I went to check on her and noticed her mouth was green.
Me "Kay, why is your mouth green?"
K: nonchalantly, "Oh, I just tasted my marker"
Me "Kay, markers are not for eating"
K: Annoyed I would be dumb enough to think she tried to eat a marker, "I didn't eat it. I just sucked it a little"

One of Kaylee's friends just became a big brother. It was the first set of friends who became a big sibling (many followed immediately after). After a playdate with her friend Hayden and baby sister, Lila, Kaylee was beyond confused about the family dynamics. She just couldn't comprehend how there could be two children in a family. She finally decided her 2.5 year old friend must have been Brittney's (the mother's) husband and Lila was the child. As much as I tried to explain otherwise she wouldn't have it any other way.

Thursday, March 12, 2015

Two and three quarters

Dear Kaylee,
After the age of two I stopped your monthly updates. You are still changing everyday, but in ways much more subtle than taking your first steps or first words. Although, your accomplishments may not seem as spectacular on paper as when you were experiencing firsts I find that each month I am loving the child you are becoming and am in awe as you transform in front of my eyes.

We are knee deep in the terrible twos, but honestly kid if others consider this age terrible they are focusing on all the wrong aspects. Sure, you can be strong willed, bossy(!!!!), and you can negotiate like a beast, but oh those are the things that are helping you grow into the strong, beautiful woman I know you will be. I like this age the very best (I think I say this every month).

So what has changed in the few months since you were two and a half? Lot, babe, lots! You have a profound love for the color green, profound! Your green crayons are down to little nubs, your green markers are running dry. There is no color in this world that brings you more joy than the color green.

You have always been extremely affectionate and that continues to grow right along with you. You cover me with kisses, Snuggle me to my hearts content, and tell me, "You are my favorite in the whole wide world!". My favorite though, is when you squeeze my arm or leg and you clench your teeth so hard and growl, "I JUST love you!" That is my favrotie because I know that feeling, I feel it towards you every.single.day! The feeling of I love you so-much-I-could-squeeze-you-so-tight-that-it-would-squish-you-but-I must-show-a-little-self-constraint-because-I-love-you-so-much-I-would-ever-hurt-you-kinda-love.

The most profound change though is your desire to be independent from me. Yes, you have been growing a little more independent from me from the day you were born. The last year has brought such rapid changes towards independence that I should have seen this coming, but I didn't. You like to play alone, in your room, with your door closed. You pulp the toys off your shelf and play in the middle of the room completely alone. Those same toys you used to pull into the living room to play within a few feet of me. Little one, I know this is a good thing. I know this means you are confident and secure and growing into the little girl you are supposed to be, but I can't deny that my heart breaks just a tiny each time you close that door and block me away from your imaginary world that belongs to only you. I feel a little pang of sadness that you don't need the comfort of my presence throughout the day. Oh, but I wouldn't change a thing!

Tuesday, March 10, 2015

This Skin

A few days ago I explained the process of getting desensitized to IV antibiotics. While in the hospital I had heart monitors connected to my chest 24/7. If you have followed my blog at all you know I have very sensitive skin when it comes to adhesives. So it should come as no surprise the heart monitors (all 5 of them) gave me these nasty blistering welts. The picture to the right is of my lower rib cage after I removed the monitors. The blisters are hard to see, but they quickly developed and boy were they itchy! I have been home from the hospital for almost a month now and you can still see where all my monitors were by faint little red circles dotting my torso.



And as if that wasn't bad enough check out the little red bumps on my arm (they are subtle and easier to see towards the underside of my arm in the pic) where the blood pressure cuff was for the entire three days. The blood pressure cuff!!! No tape, no adhesive, nothing!! I think the combination of the cuff being on the same part of my arm that my old PICC lines were placed didn't help because that skin has become insanely sensitive since my bad PICC experiences. Although this rash faded within a few days I was confused as to how I could possibly react to a blood pressure cuff!

I still find it perplexing that outside of CF medical experiences my skin is not sensitive at all. I have never had a reaction to detergent, soap, lotions, anything! I have normal skin, but the second I have some sort of medical tape, adhesive or a constant blood pressure cuff on my skin it starts reacting.