Friday, March 28, 2014


So sickness came to visit our house once again. It seems to find it's way to us, uninvited, on a regular basis now. It started as it usually does, through my husband. I was finally in a good exercise routine, feeling better from the hospital, and doing well so my heart sunk when he said he felt a scratchy throat coming on. We tried to quarantine him and I took extra naps, went to bed early, upped my supplements, but once my daughter caught it I knew I was the next victim. There is no escaping the wrath of sick baby germs when you wipe their nose, snuggle their germy faces, and get coughed on by their tiny mouths.

The nasty head cold left me coughing so hard and long I was without a voice for longer than the duration of the cold. Just as I started to feel like my cold was going away I started to feel feverish. As the days went on the cold symptoms disappeared, but the fevers, oh the fevers, became uncontrollable, often 103 even after taking Tylenol!! I was left most of the day shaking and sweating in bed. I eventually ended up in urgent care one evening after having excruciating pain in my right flank. Although, I never found out the cause (yet- they are still investigating) of what was going on I was given antibiotics and after being sick for over 2 weeks (the cold and then fevers) I am finally feeling well again. My energy is back, my appetite is back, and I am starting to get back into my "well" routine. I am hoping to stay healthy long enough to work on all the plugging that is clogging up my lungs. I need a break from sickness to work on my CF which so desperately needs attention. Luckily, I am still doing flutter 2x/day, 100-120 minutes of Vest a day, and 20 minutes of percussor so I am hoping so much that it is starting to make a difference. How can it not, right?? Right?

Monday, March 24, 2014

Circus Act

Sometimes doing treatments with kids is like a circus act! My daughter is wildly independent in her play which makes treatment time so much easier than when she was little. She plays around the living room or goes outside (I can easily see her from where I do treatments). However, kids will be kids and there are days that I am pulling my hair out trying to get treatments done.

Today for example during one 30 minute Vest and neb cycle my sweet daughter:

  • Spilled water all down her dress and needed me to dry and change her clothes.
  • Went pee on the potty so I had to wipe, dump pee in big potty, wash hands, and clap and cheer.
  • Fell out of her chair while eating a snack and needed a "mama hug" and kisses.
  • Went poop on the potty and needed me to help her wipe, dump, wash hands, and cheer.
  • Finished her snack and asked for more banana adding a long, "pleeeease" at the end. 
  • Dropped a wooden block in her toddler potty and then cried because she didn't want to touch it because poo poo goes in the potty. 
My thirty minute treatments quickly turned into an hour and a half! At least life is never boring with a toddler in the house!!

Wednesday, March 12, 2014

21 Months

Dear Curly Haired K,
You are becoming so grown up and I love watching you transform right before my eyes. Our days are full of conversation (often the same topic repeated over and over), art, playing in the yard, seeing family, and lots and lots of snuggles!

I am learning a lot about myself through your language development. I need to stop saying the word, "shit". I also must lose things a lot because you love to open drawers and cabinets, look around with a puzzled expression and say, "Hmmmm? Hmmm? Huh? Huh?"

Things You Like: You love narrating life so we get an instant replay of everything we do all the time! For example after I returned from a run I got this little replay,

K, "Mama run, run, run!
Me:"Yes, mama went on her run."
K, "TayTee (Kaylee) home wee wee wee (she says wee wee to indicate she was crying).
Me, "Oh, was Kaylee crying while mama was gone?"
K, "Yesh, Mama back. No mas (no more in Spanish) wee wee.

Or at the hardware store with my dad. He dropped something while we were walking

K, "Uh oh. Papa drop! Mama drop? No, Papa drop. Taytee drop? No Papa drop. No Nana drop. Papa drop. Yes, Papa drop. Uh oh drop Papa! Uh oh Uh oh. Papa drop." (this went on for a very long time)

You also like to retell stories with a little extra drama. Who knew that started so young. After playing outside for a little the neighbors dog came out and poked his nose through the fence to see what you were doing. You said hi to him and carried on your business of digging in the dirt. Later when we went in you told dada,

K: "Dada!! Chucho (dog in Spanish) come! Taytee gasp!!!!!" you dropped your jaw and looked shocked throwing your hands over your gaping mouth. Somehow my memory is that you were rather indifferent to the dog.

Dislike: Your hair keeps getting longer and longer, but you can't tell unless it is wet because as it gets longer it gets curlier and curlier. Those crazy curls match your spunky personality, however, they have a tendency to curl into each other making tangles. And if there is one thing you hate it is getting your hair washed and you really don't like it brushed (with my fingers- I learned you don't use a regular brush on curls the hard way). If it were up to you your hair would be rockin dread locks. Mommy's hair is as straight as can be so I am still trying to figure out how to care for those little curls.

Words: You know *almost* the whole alphabet in Spanish (except you still think w is m) You can't recite the song correctly although you try, but you have letter recognition. It makes shopping a little slower since you have to tell me every single time you see a letter you recognize.

You keep saying new words everyday. Yesterday you said, "itchy" (while scratching your cheek) which was cool since I didn't know you even knew what that word meant. You also recently learned, "Mama get it" which, although cute, is not my favorite sentence since you are usually bossing me around with it!

Monday, March 10, 2014

Plugging Along

You ever know you need to do something, but you just can't muster up the courage to do it? Yeah, that is how I felt about calling the doctor about my CT scan results. I kept telling myself I needed a few more days to mentally prepare for the news. If he told me my lungs were extremely scarred and I had no chance of regaining my lost lung function I wasn't sure I was ready to hear it. I had to roll the idea around my head a little more, process, decide how I would deal with the worst case scenario. Everyone kept asking me if I called, if I got the news and I was embarrassed to say, no over and over again. I guess I am slow to process, but I have found over the years that it may take me a little longer, but I can find my peace and move on without dwelling on the past. Had I called the next day, regardless of the news, I would not have processed and would have unsettled feeling even if the news was positive. Does that even make sense? Who knows, but it seems to work for me!

So to the results. I finally got to a point where I felt at peace with whatever news came my way and called my CF nurse. She was out of town. Figures. The doctor called a few days later while I was out jogging (woohoo!) which meant I missed his call (boo), but luckily he left a message. He started with, "I have good news and I have bad news." Great. He said the good news is...(except I really wanted the bad news first so now I was getting a little nervous and wanted him to hurry up and talk faster), "there is no infection into your lung tissue or pneumonia." Considering I really didn't even consider this an option (based on my symptoms) I didn't really find the news all that good which made me a even more nervous for the bad news.

"The bad news is....well maybe you will consider it good news (then why oh why did you call it cad news?) you seem to have some severe plugging which unlike scarring is reversible". Tears of joy (and I am not an emotional person so you know I felt relieved!!) My little K came running over and said, "Mama hug" while throwing her little arms around my body in a big bear hug. She always knows what I need when I need it. I was told to up my physio and exercise and to try to move out as much crap as possible. He didn't say crap, but whatevs.

Although that was the best case scenario in my head and I was eternally grateful for the news here is what kinda threw me off. I have been 100% compliant for years. YEARS! So how is it all of the sudden my lungs are filling up with so much mucus they are plugging my airways and causing my PFTs to suffer. I kinda figured if you did everything the doctor said your lungs would remain relatively clear. Sure, infections and scarring is inevitable and happens no matter how hard you try to avoid it, but I didn't really think I would fill up with so much mucus that I couldn't breath by doing everything I am told. I have a few theories which I will post once I figure them all out (remember I am slow to process) just in case it may help someone else that finds themselves in a similar position. Hindsight is 20/20 so maybe I can use my hindsight to prevent you from filling up with green slime.

If you have any suggestions for moving plugs I would LOVE to hear them. I am currently:
Vesting 2 hours a day
Using flutter 2x/day
Using a percussor about 30 min a day
Running 5x/week
Pulmozyme 2x/day
HTS 7% 2x/day
Inhaling L-Glutathione 2x/day

Thursday, March 6, 2014

Who You Inspire

Don't worry, this isn't some brag post about how amazingly inspiring I am. In fact, it is actually about what a superficial freak I am, but more on that later...

I brought Kay to the river down the street a few days ago to let her chase the ducks (is that bad? I mean she lovingly chases them saying, Uppo Uppo quack quack" with her arms stretched out as if they would gladly run to her and let her pick them "uppo" and snuggle. Maybe that is considered animal abuse though. Hmmm, I may have to reconsider our hobbies). Anyway, my lazy self plopped under a tree to watch her shenanigans. As I was watching her I saw a woman on the other side of the river jogging. She was young and really didn't look out of shape, but I could tell she was really struggling. I was being rude and watching her as she exercised. She would run a little, then stop clearly exhausted. She would then start walking slowly until she built up the energy to jog a little again. She did this until she crossed the bridge and was on our side of the river. I creepily (in a non creepy way) watched her as she struggled to jog even a few feet at a time.

She slowly made her way to where Kay was playing. As she ran off I got to thinking about my own get-into-shape-adventure. I started jogging at the park a few houses down from my home because two laps of the park was equal to a mile. It was an easy way to gauge how far I had run. Unfortunately, as the weather is getting nicer the park is filling up with people. Okay, so this is fortunate since that is what the park is for, but it is unfortunate for me because I know I look like a 80 year old man when I run. I huff and puff and cough and the worse part is I am moving in sloooow motion. I always worry people must look at me and think, Geez why does that young woman look like she is going to die when she is barely moving her legs??

While I was creepily (in a non-creepy way) watching this woman struggle I thought to myself, good for her! She is clearly doing something that is difficult for her, but isn't giving up! I actually wanted to say I was proud of her, but realized that would be super weird and creepy so I refrained! The best part is she wasn't ashamed (or at least acted like she wasn't) despite her super slow pace. When I run in slow motion past people I usually pretend I am so into my music that I don't even notice them so I don't have to make eye contact with them because that would be humiliating (even the time the dog was chasing me and I thought I was going to pee my pants because I was terrified he was going to eat me alive).

So thanks to the random woman who was running along the river I am totally inspired to ignore the voices in my head saying I look like I am about to die every time I jog (even though I often feel that way) and instead I will tell myself I may be inspiring someone who is too nervous to try to get back in shape. At the very least I am making people thankful that they are not as out of shape as I am which, hey, whatever I can do to make my fellow man and woman feel better about themselves is fine with me.

Wednesday, March 5, 2014

Toddler Talk

I find myself thinking, "I can't believe you said/did that!" about a million times a day, dear little K, but by the time Dada gets home I can't remember anything that you did. I am going to write down some of your funny quotes and keep them in a monthly series so I don't forget.

1. Walking along the sidewalk you found a pile of dog poo. You stopped pointed to it, looked up at me with concern and asked accusatory tone, "Mama poo poo?" I reminded you I poo in the potty and that was dog poo. Now whenever you see dog poo you always remind yourself, "No mama poo poo. Do Do poo poo." Glad we straightened that out!

2.You are obsessed with the alphabet and know most of the alphabet in Spanish and a few letters you know in both English and Spanish one of which is the letter J. Recently while talking about your uncle Jay you stopped mid sentence and corrected yourself, calling him jota (J in Spanish). Uncle Jay is now referred to as Tio Jota (we had to teach Uncle Jay what jota meant though).

3. You are obsessed with your dedos (toes) doing human like activities. You like them to turn the pages of your books, play with your toys and weird kid stuff like that. The worst though, was when I caught you pretending your dedos were doing breathing treatments compete with spitting mucus into a cup!

4. You helped your Papa and I plant a few trees in our yard (peach and cherry!). You didn't like the idea of fillinf the holes with soil so we told you the soil was the trees num nums (food). A few days later I found you holding a clump of dirt up to our raspberry plants saying, "num num tree!" and making fake chomping sounds.

5.You were really mad about coming into the house after playing outside for your nap. As we came in the door you lets out a huge, loud, ear piercing shriek. I sat you down and we had a talk about how it is okay to be sad or mad, but it is not okay to scream at mama. You looked at me and said, "Taytee (Kaylee) yes yes wee wee (cry). No Taytee AHHHH!" Later while putting you down to nap you were crying big huge crocodile tears since you didn't want to sleep. Then you suddenly stopped crying and said, "Taytee wee. No AHHH" and then went back to crying your big fake tears.