Friday, December 19, 2014

Two and a Half

Dear Takey,
You are hurling towards three and I am just trying to keep up with how fast you are growing! You spend your days trying to be  as independent of me as possible only to run back in my arms and snuggle close asking me to carry you "like a tiny baby". You are discovering who you are and who you want to be testing your wings (and at times testing me!)

A trait you have had since you learned to talk was bossiness! You also are a rule follower and you like to enforce those rules (hence the bossiness). On playdates you are quick to tell your friends what isn't acceptable, "No climbing on the table!" You also are wildly bossy (in a loving way) to your cousin. Recently, at my parents the two of you went outside and when your cousin ran to the (locked) pool gate you ran after him.
"Stop! Stop! Look me in my eyes. Do NOT go in the pool!!" Needless to say we are working on respectfully telling others the rules.

Your imagination is bigger than life! You pass in and out of pretend and reality that i often confuse which is which. Like when you shouted there was a black widow in your cup. I ran with the speed only a worried mother (with crap lungs) could run only to watch you coo into your cup at the imaginary black widow mommy and baby pair. There was also the time just after you turned two (before i realized how much time you would spend in an imaginary world) that you shouted to me that it was too dark to see. We were in the sun filled living room and I had slight concern for your eyesight. W
hen I inquired you explained, "I pushed this green button o
n the wall and now it is dark!" and then just to be sure I understood you assured me, "Mama, it's just pretend".

You are wildly independent and refuse help when going to the bathroom. You use a chair to turn on the light, hoist yourself on the adult toilet, you flush and even turn off the light yourself. Other times you ask me to cuddle on the couch and pretend you are a tiny baby. It this dance of running from me to be independent only to run back for reassurance. It is wonderful watching you grow and change, but I am glad my arms are still your favorite place to be.

Sunday, October 12, 2014

Where We Started

I havent updated in a few months. I am currently without a computer and trying to type without a keyboard is challenging to say the least. However, I do want to update.

My last post life was turning around after a grueling 18 months of endless setbacks. I felt I was finally getting a hint of my old life back and started, just started, to feel some hope for the future with my husband and daughter. Oh, but life is cruel and less than 2 months later I am back to my lowest lung function, 30%.

About two weeks ago after finishing another round of antibiotics I started waking in the morning with extreme lung spasms. The spasms were so bad that I would be on the floor, coughing, choking, and throwing up unable to function until my lumgs calmed down again up to an hour later. I knew it wasnt an infection because once ,y spasms would stop I would be fine the rest of the day. I went to the doctor and he believes I was experiencing acid reflux at night that was actually going into my lungs causing the extreme discomfort.

The good news is after one dose of antacids my horrific spasms ceased. However, according to my home FEV meter my lung function hasnt changed. You win some you lose some, I guess.

Thursday, August 7, 2014

No More Cough Cough

I have been doing really well keeping up with my exercise routine to the dismay of my daughter. She started crying whenever she saw me put on my exercise clothes. The other day I sat her down and explained that exercise helps mommy's lungs so that I don't cough so much. She seemed to understand and whenever she starts to get upset at the prospet of me leaving to the gym we talk about why I go to the gym and she usually calms down.

Last night, I had a horrible night cough and spent most of the night awake hacking away. Around 5am I found little Kaylee at my bedside where she whispered, "Kaylee exercise with mama so no more cough cough."  She doesn't actually know what exercise is, but she knows it helps me stop coughing. Despite waking her up two hours early because of my cough she came in my room full of love and a solution. I love this kid more every single day.

Friday, July 25, 2014

6 Weeks Later

About a month and a half after my first positive appointment in about 18 months I had a follow up appointment. To say I was nervous is an understatement. I felt much better health wise than when I was at my worse, but wasn't so sure I was any better than my previous appointment 6 weeks ago. When my health improves or declines slowly I seem to adjust with the change and it can be hard to measure the differences I feel. "Did I have this much energy two weeks ago?" "Was I coughing more than this after swimming last weekend?" can be impossible questions to answer because these changes can be so subtle.

So Monday morning as I waited for my PFTs I kept reassuring myself that as long as I didn't lose lung function I was okay. I had energy again, I was swimming again, I maintained my weight without supplements (I stopped Megace and due to an insurance issue didn't have Ensure). So although I wanted 35% (the goal I set for myself) I couldn't be too upset as long as I blew a 33.

2 months ago my PFTs were in the high 20s. 6 weeks ago I hit 33%. Last Monday I surpassed my goal of 35% and saw a beautiful 39% flashing on the screen!!! My highest PFT since getting the flu including my PFTs after all my IV abx and hospital stay.

And so this is officially my come back! My weight is stable despite being off Megace, my PFTs are climbing, and my monthly clinic visits were changed back to the typical once every 3 months. Watch out 40s here I come.

Tuesday, June 24, 2014

Vertex and CF

So as I am sure you all already know the results from the phase 3 Vertex trial for DDF508 has been released and were positive!!! We are hoping the FDA approves it by end of quarter 2014, come on FDA!!

There seems to be a lot of mixed feeling about these meds which I find bizarre to say the least. Many people, like me, are excited, of course! But there seems to be a very vocal group of CFers that like to point out all the negatives of this potential drug.

Ummmmm, hello!! There are new drugs coming out for CF, how in the world is that a negative thing?? Is this a cure? No way. Will it make our lives normal? Nope. Will we see an increase in our PFTs? Maybe, but no guarantee. Will we get to reduce or stop doing our treatments? Of course not! Is there the potential for negative side effects? Yes, but have you ever taken Prednisone? Most side effects > better than being killed which is what CF does best.

Regardless, we have another tool to fight this awful disease. One more chance to live a longer life. One more defense against lung infections and scarring and permanent damage. It may not work for everyone with DDF508, just like Tobi doesn't work for me, but for those it does work for it is totally worth it.

So today is a game changer! Today I am going to celebrate and be excited about the future for CF patients because we are moving in the right direction and there are other drugs following close behind. We just need to keep hanging on as long as we can so that maybe someday our life expectancy will be virtually normal and we can look back and say, "remember when CF would take so many young lives..."

Saturday, June 21, 2014

Toddler Talk Part 3

Nothing is cuter than toddler talk. Their little made up words, brutal honesty, and adorable way of saying things you would never anticipate. Here are a few of Kaylee's:

K: "Mama going poo poo in your pants? That so yucky, mama!"
M: "I didn't go poo poo in my pants" (btw I didn't even pass gas)
K: "Not yeeeeeeeeet!" in a sing song you just wait little voice.

I threw a big frumpy t-shirt on one morning.
K upon seeing me: "Gasp! Nice dress, mama!!!"

Kaylee and I went to music in the park to get ice cream. As we were leaving:
Kaylee: "I like ice cream!"
Me: "I love ice cream!"
Kaylee: "I love YOU, mama!"
She then proceeded to tell everyone we passed, "I love my mama so much" with a few, "I love Kaylee" thrown in for fun.

Kaylee was on the slide in the backyard while I was watering. My hubby was at work. 
K: "Mama!"
M: "Yes, Kaylee?"
K: "Dada is sooooo whiney!!!" And then she went back to playing.

After singing a little made up song Kaylee says, "Mama, Kay-kee is songing (singing)."



Friday, June 20, 2014

Senior Citizen Status

It is official, I have hit senior citizen status at the ripe old age of 30. Let me back up and explain how this happened. So about 2 months ago I joined the gym as suggested by my doctor. I joined a gym with a pool because I was strongly encouraged to swim since it is a great form of exercise for the lungs. However, for various reasons (including fear of failure) I was avoiding the pool. I went to the gym religiously, but I worked on weights and the elliptical machines, but did not step foot in the pool.

I promised myself last week that this week, the week after my daughters (2nd!!!!) birthday I would start swimming. Monday evening I had childcare for K so I knew my goal was to get in the pool and swim as many laps as possible even if it only meant one. I couldn't find my bathing suit, but since I promised myself that I couldn't come up with excuses I pulled out a tankini I had in the back of my closet and decided to go for it (hoping that nobody would be in the pool to see my beach rather than workout attire).

As I approached the gym I glanced through the fence to the pool hoping to see it vacant. No such luck! In fact, it was really really full. I also quickly noticed that these people in the pool weren't moving, but rather standing around in the water talking. This could only mean one thing- aqua aerobics was about to start. You know, that old lady exercise class that takes over the entire pool. I quickly realized, by looking at the gym class schedule, that the pool would be occupied for the next hour for aqua aerobics which meant I could not do laps. I was standing there in flip flops and my bathing suit and I realized I was left with two options: leave or join the class. I promised myself I would get in the pool so there I was, all 30 years of myself, among 60, 70, 80 year old women.

You know what though? The one thing I did not know about aqua aerobics was that you jump the entire class. Yeah, like jump and clap under your thighs, jump in the splits (HA!), jump to the side, just jump jump jump. And if there is one thing that really shakes up mucus it is jumping. I found myself coughing half way through. I even started coughing to the point that I was starting to get those side glances from the other women and I wanted to shout, "I am not sick, don't worry!!" So despite being 30 years younger than everyone in the class I plan on going next Monday and even the Monday after that!

**Oh and I did get to the pool a few days later and was actually able to get way more laps than I ever imagined I would be able to do after being out of the pool for so long. Take that, 33%!!!***