Wednesday, December 23, 2009

I did it.

I turned in my notice at my day job.

I think I'm crazy. In a time when people are blessed to be working, I have decided to stay home with Samuel.

It wasn't an easy decision. I have the best job in the world. I work for a great company. They have never made me feel like Samuel shouldn't be my priority. But when it comes down to it, I was putting that pressure on myself. And we all know that when spread too thin, we aren't good at anything we attempt, and that is what was happening.

Keeping Samuel healthy is a full-time job in itself. Over the past year while I've been working at another job during the day, I've had GREAT help in making sure Samuel's needs are being met. He has the BEST care-giver a mother could ever hope for. Miss Amy (MeMe, as Samuel calls her) is willing to do whatever it takes to keep him at the top of his game. She cooks special meals for him. She steps in and administers albuterol when he needs it. Truly, I couldn't have found a better care-giver for Samuel unless, of course, I cloned myself, and even that is questionable.

But, as the year has gone by, I've found that I terribly miss being with him during the day. I've been praying for God to open a door to make it possible for me to have the best of both worlds: stay with Samuel and do something from home to help financially contribute to our family. Well, it happened. It was an open door. I asked and it worked out. Amazingly. I'm still astonished at how God works sometimes.

And then I started second guessing. Is this the best decision for us? I love my job! Is it really time for me to leave? In this economy... who really leaves their job? What about my co-workers? They are my friends too. What about the adult communication that will vanish from my day? uh-oh. This was going to be a tougher decision than I ever anticipated!

But, last week, I spoke up and made a decision. It's best for Samuel and, honestly and truly, no matter what I want, I have to do what's best for him and his health. And this is the best for him.

December 30 is my last day at my office job. Then I start the most difficult job in the world: stay at home mom. I'll be helping my dear friend Anna with her little (well, younger...he's not little...hee-hee) guy 4 days a week. I am so blessed. I'll go crazy, for sure, but it will be awesome. And in my spare time (ROFL) when I'm not chasing a very active two-year old, potty training, warming bottles and changing tiny diapers, I'll be studying chemistry. It's the last class I have to take before I can enroll in the nursing program. Yes, I'm going back to school too. Lord, help us all.

So, no, I'm not really leaving a job, I'm just changing jobs. And I am so excited about it. It's bittersweet, really.

Again, God help us all.

Tuesday, December 22, 2009

it's not worth it

Confession: I'm a selfish giver. I give things away knowing I'll get them back eventually. For example: I've given Samuel's friend Hudson shirts, shoes and toys knowing that when Hudson grows out, it will end up back in Samuel's closet.

It's in the spirit of selfish giving that I'm telling you to not even bother checking out this giveaway from BabeeLove.

The "Believe" pillow is not the cutest thing you've ever seen and you will have to look long and hard before you find anything you like on YouCanMakeThis.com. Trust me, I searched it for you already. And don't even bother going to BabeeLove and entering to win the current giveaway. You probably won't win either of the 2 she has available.

But, should you not take my advice and go over there anyway, don't steal my chances of winning. Good luck.

Tuesday, December 15, 2009

For those keeping track

I was impressed with Samuel's interest in the potty. I speak in the past tense because we had a relapse this weekend. Well, I didn't. He did.

I'll save you the long story but give the high points:
Samuel sat on the potty for 15-20 minutes with no activity.
I got Samuel dressed.
Went to get myself showered and dressed.
Samuel got himself undressed and went streaking through the master bedroom and closet.
He stayed missing a bit longer than most streakers do.
Samuel walks out of the closet and calls to me. "Mom! Mom!"
My response: "Yes, Samuel?"
Pointing to where he came from: "Mom! Pee!"
Indeed. Pee. All over my dear husband's clothes.
Thanks, sweetheart, for letting me know. Now, let's get you dressed again and put the laundry in to start.

Monday, December 7, 2009

Early Christmas and a Christmas Casualty

About a year ago I had a post titled Christmas Casualties. Although it's a little early this year, there has already been a casualty this year. Really, it's to be expected. Samuel is 2. He likes loves to play ball.

Before you get too impressed, I haven't yet decorated for Christmas. I changed the fall wreath hanging on our front door to a wintery wreath (you know, to keep up appearances) and set out 1 of the 2 Nativity scenes I have. And a box of decorations has made it in from the garage. That, my friends, is where the problem is. See, the box brought in has the ornaments in it. Glass ornaments. That look like shiny silver balls. Laying right on top. Begging little hands to play.

You can imagine Samuel's surprise when this ball didn't bounce on the tile, but broke into a million little pieces. What a loss.

There was another minor casualty. Of the 2 decorations I have put out, I broke something else. The Virgin Mary's hand broke at the wrist. I can't blame the little man for that one, though. It was all mommy. But nothing a little super glue couldn't fix. Now that I think about it, super glue has been my friend lately. It fixed a snowman/"believe" knicknack that somehow hit the floor a few days ago. Again, no big deal. Superglue. My friend.

I've had an early Christmas this year. My dad has come to visit for a week. When he visits, things get done around my house. Walls get painted, it feels more like home than before. This year, I got new furniture. An awesome dining table and chair set from World Market to replace the temporary (and 6 year-old) table and chairs* from Ikea. A brown chair, dresser and side table was added to the guest room. Now my guests can put their clothes away and not live out of their suitcase or pile clothes up on the floor.

Thanks, mom and dad (papa and gagaw) for the early Christmas gifts! Everyone in this house really appreciates it!

* Want some red chairs and cushions for your house? See my craigslist post.


Tuesday, November 10, 2009

Happy Birthday Samuel! It's really potty time!




First, I need to apologize to my readers, all two of you, for delaying my blog posts lately. I'm getting overwhelmed by not setting my priorities the way I need to. Things don't work the way they are supposed to when everything is equally important.

That being said...
My little man is TWO! His birthday was upstaged by the harvest festival preparations at the church so we postponed celebrating until the following weekend, when we wouldn't be competing with other plans for the fake holiday. After all, Halloween isn't really a holiday.




Since he loves Yo Gabba Gabba! we decided to have a Gabba party at our neighborhood playground. While I did plan some games, like Pin the Eye on Muno, a pinata, and some coloring pages, most were upstaged by the swingset and presents. We never even played, didn't even LOOK at my Pin the Eye on Muno game (it's awesome!). But it's OK because the kids had fun.

On his actual birthday I made a simple cake with his Yo Gabba Gabbas on the top (yes, they are from the Jack in the Box kids meals), even though I had wanted to do something more like MckMama's Rainbow Cake but I simply ran out of time.



However, for his birthday party, I DID have time for my version of the MckMama Rainbow Cake. It was, honestly and truly, easy to make. It took me a few hours but that includes mixing the colors and, of course, baking, which is like watching a pot of water coming to a boil.

I had intended to document my steps a little better but I had the help of a certain birthday boy in the kitchen so it's amazing that I even got the cake made. But, for those who asked, this is how I did it.

Using a recipe from the Cake Mix Doctor (the basic butter cake), I doubled the amout of cake mix I needed. After the giant vat of cake batter was prepared, I split it up onto 6 bowls. I started by measuring out 1 cup of batter in each bowl, but it ended up being about 2 cups of batter per bowl/color.


Yeah, I have a messy kitchen counter. I know. I used the gel food coloring because it would provide vibrant color without watering down the mix.

Because I don't have 6 round cake pans, and I wasn't about to buy 6 more kitchen items (see above picture), I bought the cheap foil kind from the store. They were 9 inch round with a scalloped edge, which did not make a difference. I buttered and floured all 6 of those and baked the cake in two cycles, 3 pans each time. Then, I stacked up all six in the refrigerator overnight.

The next morning I made the frosting (yum yum yum) and cut all the layers to the same height using a Wilton Cake Leveler. You can also use a knife.



Then I stacked the layers between the icing, measuring the icing for consistency, put a quick crumb layer on and put back into the fridge. About 45 minutes later, the cake came out, got iced for real, decorated, and taken to the party. No pictures were taken at the party, mostly because we all were busy (lame excuse) and mostly since the cake stayed covered due to flies (yuck!).

But, from inside my refrigerator, this is the final product. Well, half of the final product. I acknowledge that it looks like it belongs on CakeWrecks, and for that, I am very sorry. Please take my word that it really truly was, cute.


In other news, the hypertonic saline study is going very well. We've been participating for 1 month. Only 11 more to go! By participating in the study, it's made our process a bit different. We can't double up and do neb treatments while he is hooked up to the vest. Samuel's treatments take an hour now, twice a day. Even more if he fights it, since I have to talk him off the ledge every few minutes. If Samuel should need to start back on TOBI, that will easily add another 30 minutes to each treatment time, not easy for a 2-year old. But he is a trooper and takes it rather well.

Also big news---Samuel is using the toilet! He started showing an interest a few days ago, so I put him up on there and he peed! He's using it at every opportunity and is really understanding what a big deal it is. And even though I'm super excited about it, I'm trying not to push him too fast to use the potty exclusively. I don't want to pressure him and make it a bad experience. He will do it when he is ready.

I suppose that's enough talk about the toilet. And there should be enough pictures here to hold people over for a while (mom and dad!). Check back later for more updates!


Thursday, October 8, 2009

Hide-A-Key

The day was October 6. It was a Tuesday morning. Samuel's Grammy and Papa leave early in the morning. So early, in fact, that Samuel and Mommee are still in bed. But we are resting because today is the day we have to go see Dr. O at PCH for our check-up and get the details on the hypertonic saline study we will be participating in. It's a big day. Mommee is anxious about Samuel's weight...always a concern, especially since we got the "yellow light" at the last visit and half-and-half is now part of Samuel's regular diet.

Since the appointment was in Phoenix at 8:20 am and we live outside of Phoenix, I was planning on leaving our house around 7 am to allow for traffic delays. This also meant packing some easily accessible snacks for the little man.

I got up early. I got Samuel up early. We got dressed. We packed our stuff and I was loading all our stuff (the Mary Poppins purse, Samuel's diaper bag, snacks and stroller) in the car when the worst thing happened. I heard Samuel do his latest stunt: he locked the door. Not too quick to panic, I reached in my purse to grab my house keys.

The pocket was empty. I fished around, just knowing my keys were in the bottom of my bag. No keys. Just a cell phone (and a ton of other junk). I called Kevin, knowing he was already in Phoenix, about a 40 minutes drive away. Of course, he didn't answer his phone. Not one to beat around the bush, the message I left was "Call me. It's an emergency."

"That should get his heart racing. I'll teach him to ignore my phone calls!" I thought.

While waiting on my return phone call, I peeked through the window (the blinds just happened to be slightly open. I could see Samuel in small slivers). He was on his knees in a chair at the kitchen table, looking back at me. He was happy and waving, yet occasionally calling for me to come back inside.

I've never attempted to break into someone's house so I don't know the techniques of using a credit card to open a door. And, while I am resourceful, I couldn't figure out how to turn a hairpin to key. While I wanted to try those options, I just don't have the skills.

My phone rang. Kevin calling me back. I told him what happened. I think he chastised me a bit to which I promptly responded "Samuel is locked in the house, I'm outside. When we get him out, then let's play the blame game." Kevin told me to call the fire department, or wait on him to come. He was too far away, so I called my old friends at the Gilbert Fire Department. (Side-note: They should really consider a frequent caller club.)

It was more waiting and watching, secretly hoping for Samuel not to move, or at least to keep making noise so I knew where he was. The fire truck pulled up, followed soon after by a police officer who wasn't really sure what to do, but just felt the need to supervise. He tried to calm me by saying this was the second time in a month he had been on a call like this. The firemen worked on opening the door. They must have asked 10 times if the dead bolt was locked. "No. Just the knob."

There were some more questions for me:
  • How old is the child? He'll be two later this month.
  • Is he hurt? I don't think so. I haven't heard him cry.
  • Where is he? Um, he's in the house. I don't know where in the house because there are these walls in the way.
Then came the shocker. One of them asked me, no lie, "Are there any other older children or adults in the house with him?" I think I was so dumbfounded, I really wanted to say "Why would I have called you?" But I just said "No, it's him and the dog."

Oh, the dog. Lucy was going crazy. She is very protective anyway and she didn't understand these people were breaking into my house because I had asked them to. *sigh*

They opened the door. Lucy was there to tear their face off, I mean, greet them. Samuel was sitting in the floor with his pants around his ankles. Everyone was happy to see everyone. We thanked the firemen, went outside to see the truck, then went back inside to regroup.

Since the whole ordeal had taken longer than I had cushioned the schedule for, I called the CF nurse coordinator to let her know we would be a little, or a lot, late. We decided it would be best to just reschedule since their schedule was packed that day and there really wasn't any wiggle room. Fine by me. I needed to go get a new door knob for my door! All in all, it was much more action than I cared to see by 8:00 am. And without any coffee.

Still alive

Absent. That's me lately.

Dear Husband's parents were visiting. So any and all free time was filled with entertaining and traveling to the Grand Canyon. But I won't make more excuses. The truth is:

I didn't want to. *gasp* I know. Who knew a woman would not jump at the chance to share her opinion?

I just didn't want to. But now I do and I'm thinking about what I want to talk about. So give me a second, OK?

Tuesday, September 29, 2009

A Must Read

If you spend any amount of time with a person with cystic fibrosis, this is a must read. It should be mandatory.

MONDAY, SEPTEMBER 28, 2009

Caution: Harmful Fumes Ahead (for CFers)
On Thursday evening, I decided to paint my nails. I'm not much of a girly-girl, so I rarely partake in this form of pampering, but for whatever reason, I decided Thursday night was the night. Ronnie and I were watching TV, I jumped up, grabbed the the nail polish bottle, plopped back down next to Ronnie and began painting. Two nails in, Ronnie moved to the other chair. I didn't think much of it. After finishing my manicure and waving my hands in the air (who knows if that actually dries your nails faster), I moved to get closer to Ronnie in his newly selected location. As I started to get close, Ronnie lovingly said, "just so you know a little something about me," he paused, "nail polish really irritates my lungs. "IT DOES?" I replied, feeling a little bad for not knowing. How would I have known? I never paint my nails. It doesn't bother my lungs. I just didn't think about it. But after he mentioned it, it seemed like a no-brainer.

I decided to compile a list of things I know of that irritate Ronnie's lungs, in case you have little ones that can't/won't speak up:

-Smoke - this seems like an obvious one. And sure, if someone is blowing cigarette smoke in my face, I notice, but there have been many occasions where Ronnie will say, "someone's smoking, let's move" and I haven't even smelled it. This goes for other kinds of smoke also. Smoke from cigars, pipes, bon fires, burning meals, etc. After a night with a lot of smoke around, Ronnie will often cough up blood.

-Car fumes - When we're running or walking on the sidewalk of a busier street, Ronnie often complains of how the car fumes make his lungs feel and it often irritates his lungs making him cough more.

-Air fresheners and scented candles - Bathroom aerosol sprays, plug-ins, regular old candles, these often make Ronnie's lungs feel irritated and "itchy" in his words. If you're looking to "freshen" the air a little try potpourri.

-Perfume - If someone has too much perfume on (not just when spraying it) it really tightens up Ronnie's lungs. I'm not sure there's any way around this other than cutting back on the perfume usage. I do wear perfume and Ronnie has yet to complain, but when I wear it, I go light.

These are the only offenders that I know of. I didn't realize how much more sensitive CFers' lungs were. I hope this list helps.

Please visit www.runsickboyrun.blogspot.com to read the comments left. Very helpful information!

Friday, September 11, 2009

Five for Friday - Memories

Eight years ago today tragedy struck our nation. In some ways, it seems like this was just yesterday. In others, it seems like a lifetime ago.

1. I was in Anatomy & Physiology lab when a classmate told me what was happening. We were especially troubled since our college campus was neighboring Ft. Detrick. Our teacher clearly didn't understand the magnitude of the happenings. At first, she refused to dismiss class because she was concerned when we would make up the missed class but quickly relented when the administrator further explained.

2. Dear Husband and I were not Dear Husband and wife. In fact, we had only been dating for a few months. He was on vacation in Virginia, but drove up to Maryland to be with me. That was really nice of him.

3. On my way home from school, traffic was a mess. Phone lines were crazy busy. I didn't know where to go or what to do. I went home and noticed flags were already at half-mast.

4. Our church had a prayer meeting that night. I can't ever remember so many people showing up for a prayer meeting. I don't think I've seen so many show up since, either.

5. So many questions. So few answers. Such a moving day. Eight years later, still sobering.

In remembrance of those lost in connection with that day...

Thursday, September 10, 2009

Thankful Thursday

Well, I've just about missed Thankful Thursday. But it's never too late to be thankful. So, here we go:

1. Applebee's Boneless Buffalo Wings (Why are my thankful items food?)



2. Munchkin Re-Usable Microwave Sterilizer Bags - Even though we are past the need for clean bottles, these bags come in very handy for sterilizing nebulizer parts.


3. My family and friends. They are the best support system and I appreciate them all.


4. My new (to me) MacBook Pro.



Monday, September 7, 2009

Let's go back.

Whenever I stumble upon a new blog that I think I might be interested in, I always like to find out how it is relevant to me. In an effort to make that easier for some new followers (welcome!), I'd like to start by giving a brief run-down on Samuel's story.

I suppose the best place to start would be at the beginning. Because I believe the beginning is before birth, I'll start there. You know what? I'll start with before conception because that's really where the story begins.

Dear husband and I had talked for a while about starting a family when we lived in Maryland. After going back a forth for a few months whether it was the "right" time or not, I announced that it was, indeed, the right time because I said so. Fast forward 1 year. We moved to Arizona. Hadn't used any form of birth control. Still no baby. No sign of a baby. Nothing. This shouldn't be. So I scheduled an appointment. We were just going to have some tests done. Without giving away everyone's business, and since this is the clean version, we were told sometime around Feb. 13 that we were welcome to keep trying but the chances of me getting pregnant the routine way would be very slim. Closer to none.

In a way, I knew this. I knew something had to be wrong. But, we figured it was in God's plan, so we took the news, took our options, and went home. We were going to pray and talk about our options and make a decision later.

The next weekend was my birthday and my parents were coming to visit, as we had moved to across the country a few months earlier. They may or may not have known of our plans, but we decided it would be a good time to tell them they might not be getting any grandchildren from us. They were understanding, supportive, and clear that whatever decision we made would be the best one. I remember my dad said, "You don't have to be a mother to be mommy and you don't have to be a father to be daddy." This difficult, yet easy, conversation took place on my birthday, Feb. 22, over dinner. It was a Thursday. Earlier that day, on a whim, and since babies were on the brain, I took a pregnancy test since it was about that time and I thought a positive test result would be the best birthday present ever! Of course, not surprisingly, the test was negative.

Friday came, but didn't bring my anticipated monthly visitor. By Friday night, I was getting a little suspicious. Saturday morning, when there was still no sign and officially late, I took another test. I was letting it "simmer" while I brushed my teeth. I didn't have my contacts in or glasses on my face, so as I was brushing (foaming at the mouth), I was squinting to see any results as they appeared. I thought I was going crazy so I called dear husband (DH) to come check things out. As fast as I could, I spit the toothpaste out of my mouth and scrambled to find my glasses while DH peered over a little stick. He said, "I don't know, E. It looks like 2 lines to me." Indeed. There WERE TWO lines on the stick and we were going a little nuts. My parents were still visiting. My mom had been asleep on the couch downstairs so we raced downstairs, waving the urine-soaked stick in the air. My mom quickly figured out what was going on. My dad, hearing the commotion, came downstairs but was a bit confused as to why we were all looking at a pink stick and crying. Finally, my mom explained what it was. Already, we had beat the odds. You can imagine a few weeks later, visiting the same doctor who had said "good luck" and making him eat his words. It was a great feeling.

Pregnancy was smooth. We opted for no prenatal testing since a) we thought we were low-risk. No birth defects in either family. No diseases, we thought, on either side and b) it wouldn't make a difference anyway. This baby was so prayed for. When the nosy people asked "Were you trying?" I liked to say "It was hoped for but unexpected." (BTW - Don't ever ask that. It's NOYB.)

Samuel was due on October 30, 2007. Then he was due on October 28, 2007. On Saturday, October 28, I dressed up as a bag of Jelly Belly jelly beans for our church/community harvest party. I was so big it just seemed to fit. I won first place in the costume contest. I think they just had pity on me for dressing up when I was due to give birth that day.

On Sunday, October 29, my dear friend Audrey came over and took pictures of my big preggo belly. It was a nice way to pass the time.

On Monday, October 30, someone (who will remain nameless) called my phone at 6 AM to ask me "Have you had that baby yet?" Um, no. And thanks for waking up a pregnant lady. Thanks a lot. Since I couldn't go back to sleep for some minor contractions, I went to Chick-Fil-A and got some chicken biscuits for me and DH and a chocolate milkshake for Samuel.

For most of the rest of the day, I napped on the couch and waited. Didn't have any of the minor contractions I had experienced that morning for the next several hours.

I don't want this to be really long so I'm going to pause here to allow for reflection. Or maybe just a break. Stay tuned for the rest of the story.

Friday, September 4, 2009

Five for Friday - Ways to spend the day off

Recently, I have been thinking about incorporating a theme to my blog instead of just the usual brain dump on a random day. I'll probably still have a random theme from time to time, but today, it's Five-for-Friday. And today's subject is my five ways to spend the day off with my son, since that's what Friday's have been as of late.



1. Get a late start and take our time with morning treatments. *Note: This is not a good plan. It's best to do this early when Samuel is still sleepy and less willing to fight. Like here:


2. Make pancakes for breakfast (which is turning into brunch. See #1.)

3. Keep my promise to go to the splash pad at local shopping center. Hopefully the big bully kids are all in school. HA!

(Thanks to Lucy's mom - the OTHER Lucy's mom - for sharing the high-calorie popsicle recipe! Samuel loves them!)

4. Finally put my pork roast in the crock pot so I don't have to scramble to make dinner tonight.

5. Clean up the muddy paw prints through my house. Lucy insisted on going out late last night after it rained. Since our back "yard" is just mud, this wasn't a good plan.

So there you have it! The first installation of Five-for-Friday and even a five picture bonus!

Have a blessed day.


Thursday, September 3, 2009

Thankful Thursday

In no particular order:

1. Egg whites in a carton
2. Instant oatmeal
3. Super Glue
4. Rotisserie Chicken
5. Johnson's Bedtime Bath
6. God's love
7. 1 little blond-haired boy
8. My house
9. My job - and the ability to work
10. Coffee

*this could change in 5 minutes.

Wednesday, September 2, 2009

Why socialized health care is like coffee….sorta.

While standing in line behind my co-worker for access to the one coffee maker in our office, I had a thought: I hope I like standing in line.

A few months ago, the powers that be decided we should purchase one of those fancy single-cup coffee makers instead of springing for gourmet coffee-shop bought coffee every Friday. This way, each of us could get what we wanted every day and save the company some dough. Sounds like a great plan. And it is a great plan because it’s coffee and I like coffee.

There are just a few issues.

1. The quality just isn’t the same. Nothing tastes better than sipping a fresh, custom-made, toffee-nut Americano with a touch of half & half and a Splenda from a cup with a green logo and topped with a white plastic lid. Nothing. Yeah, the fancy coffee maker provides fresh coffee. I get an adequate cup of hazelnut-flavored brew, and am provided with enough Coffee-Mate and Splenda to accommodate my particularly sweet flavor preference. It’s good enough to get me through my morning.

2. When we got the fancy coffee maker, we realized we could brew coffee, tea, and hot chocolate with our machine. The one catch is, we had to buy all the coffee and cream and sugar and Splenda and the new machine. Quite an investment for our little company! We have to store it all too. When someone wants some hot chocolate, hopefully we have it in stock. If not, we have to wait for the hot chocolate to become available…sometimes up to a week for delivery! When you want/need hot chocolate now, getting it a week later just won’t do!

3. Really, it’s just one machine. We bought one machine. But early in the morning, when people have left their personal coffee at home to drink the “free” (to them) coffee at work, there tends to be a log-jam at the coffee machine. It’s not really a big deal, it IS only a cup of coffee, but sometimes, you just can’t get that stuff fast enough. Maybe we should buy another machine for those times when we are wanting coffee at the same time, but that’s too much money and we don’t really have the room for it anyway.

4. Because I am the keeper of the order forms, I get to dictate what kind of coffee, tea, or hot chocolate we get. Sure, I can be nice and order what other like, but when it comes down to it, I order Daybreak Blend for everyone because it’s MY favorite and I think it should be his or her favorite too. What? You want TEA? Um, I’ll have to see if it’s in our budget to order another box of tea. Sorry, it’s not. Besides, you got your preferred flavor of tea last week, so let’s give those soda drinkers and chance to get what they want. Oh, that’s right, this machine doesn’t serve soda. Well, it’s still their turn to decide. You ran out of votes last week.

5. Oh, the options. Before the fancy coffee maker, I used to see those white cups with green logos nearly every day. Sometimes, two or three a day. But now, I go about a month before seeing a lonely green circle logo. I feel for the people who work at the store of the green logo because we are taking money out of their pockets. But are we? We still have the OPTION to go to the gourmet coffee shop with the green logo. In fact, it’s less than a mile away from the office. But why stop there and pay for coffee when I can get it for free at the office? I’m not personally paying for the coffee in the office. It’s the COMPANY coffee! Then I think: What if everyone got on of these fancy coffee makers in their homes and offices? What if it was required to drink some sort of brewed beverage every day and you could either get it with the coffee maker, or get it at the gourmet store? I know, for my budget, I’d choose the coffee maker. I can’t afford to go get a white cup with a green logo every day. How long before the option of going to the gourmet store wasn’t an option? They can’t operate if everyone chooses the fancy coffee maker. They have no income.

So how is this like health-care reform? Well, the quality of health care just won’t be the same. People won’t value it because they have no direct financial responsibility for it. They want a cup of coffee, I mean, they want to see a doctor, they just show up, stand in line, and get what they want. Say someone has a caffeine-deprivation related headache because they had to wait to long at the fancy coffee machine. They could demand to see a specialist for that headache because it COULD be a tumor.

The wait time would be extraordinary. There won’t be enough doctors to go around. Is that a good reason for no health-care reform, no. But it will happen. By some estimates, the time it takes to choose a primary care physician would go from three months to six months. That is not acceptable. What if the first choice doesn’t work out? Can you really wait six months to a YEAR to see a doctor?

With an impending government monopoly on health-care, it won’t take long until the check-writer, the government, dictates what we get. Just like me being the lone orderer of the coffee, some fat politicking slob will be telling me what they will and will not pay for my care. Next, they will be telling me what tests I have to have done and what choices I have to make to be fiscally responsible. Um, no. Unacceptable. I can see it now. Mandatory genetic testing on the unborn to see if they deserve life. If all is clear, great. They won’t be a drain on society. If there is a problem, then mom must have an abortion because no doctor will treat the baby. Talk about not treating a preexisting condition!

Having another option won’t be possible. Just like if everyone got a fancy coffee maker, gourmet shops will be put out of business, that’s exactly what will happen to private insurance. If we all chose the cheaper option, a logical decision, how long before that is the ONLY option? Not long, I promise you. And if you think the fancy shop was founded by a greedy old man, so be it. This is America. He had a dream. He saw an opportunity. He took a chance and he made money. Lots of money. Good for him! Go capitalism!

So, stick with me. When the gourmet shop goes out of business and we are all ordering our fancy coffee-maker cups, we’ve just given the maker of the cups the market share. They can now dictate what coffee cups are available and which are not. AND they can set their own price on the fancy coffee cups because they are the only place in town (or the internet) to get the fancy coffee cups. Should my favorite, Daybreak Blend, become very popular, what do you think will happen? Of course, the price will go up! Suddenly, I’m presented with two choices. I can either pay whatever price they demand for Daybreak Blend, or stop drinking Daybreak Blend. When I stop drinking Daybreak Blend because I don’t want to or can’t pay, then what happens? The maker will either lower the price, or say there is no demand for that particular flavor and no longer offer Daybreak Blend, further dictating what I can or can not drink. My choices just went down. It won’t take long for the other less popular flavors to fall off of the offerings menu and the cycle continues.

But enough about coffee. We all need to drink more water anyway. THIS is something no one can control the rationing of. Oh, wait, yes they can.

*SPECIAL NOTE: I love the company I work for and I'm grateful they would even offer the gourmet coffee once a week or the fancy coffee maker and supplies any time I choose. Any points made here are just for illustration and are not to be misread as disgrace, disgust (at the coffee situation) or any other negative thoughts or feelings toward the current coffee situation at my place of employment. THANKS!

Tuesday, August 25, 2009

Vegetables? FINALLY!

It's finally happened. Samuel wanted to eat veggies! After months and months of putting the on his plate/tray and watching them end up in Lucy's mouth (Lucy is our dog), he was shoveling them in like it was going out of style. Of course, they were smothered in butter. How do you eat YOUR veggies?

Some other quick tricks I've learned recently: Grating carrots into mac N cheese is a good way to sneak in some veggies, which, apparently, I don't have to do anymore! We really like Easy Mac because it's a great portion size for Samuel. Husband and I don't need to be eating mac N cheese as much as Samuel does. The cool trick, though, is to add a little heavy cream to the cheese mix. It makes the cheese sauce creamy, obviously, but not watered down. It's a great way to add extra fat and calories. I'll share more tips as I come across them.

The past few days, Samuel has been learning something new. Seems like it's been faster the past few days. Friday, he came home saying "You're BAD!" and pointing his little finger. I'm pretty sure he's seen his father say that to Lucy a time or two because we DO NOT say that to him. Miss Amy does not say that to him. Her words for unacceptable behavior are "That's naughty" My choice: "That's not nice" or "We don't do that." It makes sense because he's mostly telling the DOGS they are bad.

By Sunday, "You're BAD!" turned into "You! You're BAD! Alright?" This of course, was met with, "No, that's not alright. I'm good!" But, like I've heard, you can't reason with a toddler. This is still true, in case you were wondering.

Did I mention Samuel received a gift this past week? He brought home a Mr. Potato Head and was delighted to play with it. I could hardly believe my eyes when he was still sitting in the floor playing after about 10 minutes. And it was at that moment Mr. Potato Head went flying across the room. It does sorta look like a football...

In my last post, I mentioned my guest blog and compared to time when I had to give a speech. Now, for those who have asked, it was NOT a coincidence that I did NOT mention the topic of my speech. Those who know me and my family may know it already. But those who don't, well, you've already got enough information about my perspectives. There's no need to discuss anything else controversial.

Friday, August 21, 2009

You are in the right place

Recently I was taking a critical look at the blog and it was starting to bother me that everything was so, how do I say it, so...Uhhggg. It was brown. Very brown. Not really the right color for the mood of this blog.

A few weeks ago I declared I was taking a stand. While it may appear I haven't been doing much by the looks of the blog, I assure you, things have been brewing.

I was asked to guest blog for my friend Ronnie at RunSickboyRun. He recently updated his format to include a Sound Off Saturday and is showcasing some different perspectives on the issue of health care reform. You should pop over and take a look. And leave a nice comment for me! :)

Honestly, this has been a HUGE step for me. I normally don't get involved in any issue that is a bit controversial because I hate confrontation. In fact, during my public speaking class in college, one assignment was to take one side of a contentious topic and explain why we held those opinions. I really didn't want to participate in this assignment. This wasn't debate class, for goodness sake! Of course, it was required so I did, but it required taking some risk which I wasn't comfortable with. I just like to keep my opinions to myself than have confrontation. BUT, in this case, Samuel can't speak for himself; he relies on me to speak up for him and keep his best interests in mind.

What else is happening? Oh yeah, I'm going to D.C. I feel like the real life version of Legally Blonde 2. Somehow or another, I managed to get invited to participate in a press conference on this very topic. I'll be sure to post more details as I get them. Details such as time and place.

If you are coming here to check on Samuel, well, this is a bit of an update. Wednesday I got the call that I have been able to avoid for the past 21 months. Samuel's last throat swab at clinic grew a scant amount of pseudomonas. Today (since it's 1:45 AM and I'm still up with Samuel) we start Cipro and TOBI and he will be on those for the next two and four weeks, respectively. We've been very spoiled by our MDI with spacer instead of neb treatments. The new drugs have me bummed, for sure, but strangely enough, I'm more concerned about the mask/neb treatments on Samuel's mental well-being.

Thanks for checking in. I know I don't have pictures but that is because I'm on a new computer and have NO pictures of Samuel here. Sorry. Maybe by my next post I'll have it together. Maybe.

Monday, August 17, 2009

When it really comes down to it

...we are so blessed. I've been thinking lately about what a miracle Samuel is. He is truly a gift from God. There is no other way around it, he's a miracle. It's just another benefit that he has CF.

A benefit? What, you say? Surely, Mrs. Samuel's Mommy, you can mean that. Well, I do. See, we have the opportunity to teach others about all kinds of things like, faith and trust, being obedient, and mostly, being thankful for what we have. On Samuel's last clinic visit, I was out of town. But every time we go, I'm reminded of how fortunate we are. We usually have to talk about poop and get new instructions on how to help Samuel get those cherished thigh rolls. We might get a new prescription for a new drug Samuel hasn't been on before or information about a hypertonic saline study. 

Whatever it is, it can sometimes be overwhelming. 

BUT, when we leave, I ALWAYS see another little boy or girl at Phoenix Children's Hospital who doesn't get to go home that day. Sometimes they have a feeding tube and are in a wheelchair. Sometimes they've endured chemo and have lost every strand of hair. It always touches my heart because on THAT day, I get to take my baby back home. We are only there for a visit that day. What a blessing.

Thank you, God, for trusting Kevin and me with this opportunity to be a light for others who don't know you. While admitting we are far from perfect, help us to be a good example. Thank you for this little boy you have given us because he truly is a miracle and a gift from you. Samuel is yours. And thanks for letting me hold him for just a little while.

Thursday, August 6, 2009

still working...

Just wanted to let you know, I'm working on this healthcare thing. I'm a bit busy right now but things are cooking.

I've been invited to participate in a press conference in DC next month on behalf of families just like mine. It's an honor to take a stand for what is good and right for my family and I'm not ashamed to be counted.

Tuesday, July 28, 2009

I'm taking a stand. Join me?

I decided today that it's time for me to take a stand. I am not going to sit here, with my little man, and wait for this health-care reform to happen without putting up a fight.

While I collect my material and do a bit more research, please read this and think about how it will change the way you use the system you have today.

If you would like to share information with me, please feel free to leave a comment.

Thanks. There WILL be more on this...

Monday, July 27, 2009

The results are in

and, to quote my doctor, "There is no cancer here." I don't need to see him again and I don't need to do anything else that requires a smooshing-type action for another 10 years.

The best "get lost" I've ever heard.

Samuel is getting ready to grow. He has been eating a LOT, even breakfast which usually doesn't interest him. He slept for 13 hours last night - straight through. I better start shopping for some new clothes for his skinny little rumpus.

And! HUGE NEWS!!!

Samuel peed on the potty today! We haven't officially started potty-training but Miss A is helping him. I think I will spend most of the day Friday and Saturday training us to go every 30 minutes. Fun fun!

Tuesday, July 21, 2009

How the Kelleys are falling apart


It all started last Wednesday night.

Samuel's room was just painted a beautiful blue. I (his mommy) was rearranging the furniture. Since things were a little out of order (typical in our home), Samuel found a bar from his pack-n-play and was playing with it, putting it in his mouth (again, typical). It's about 18 inches long, or so. Unfortunately, Samuel got bumped and the bar got jammed in the roof of his mouth/back of the throat. He bled for a while, we prayed really hard for a little while, called 9-1-1. He had a big gash so we ended up taking the ambulance to Banner Pediatric ER. He didn't get stitches but they did tell me to keep it extra clean. And to do that, have him gargle with some water/hydrogen peroxide, but DON'T LET HIM SWALLOW IT. And how do they suggest I do that? "Just dab some of the mixture on there with a Q-Tip." Riiiiight. OK. I should have asked them to show me. That would have been funny. 

This is how it ended...finally: (just not quite so, uh, side-ways)


After a few days, his mouth has healed to almost as good as new. However, he since developed a cough, possibly unrelated to the gash, possibly because we didn't keep it clean enough. But that too, however, is just about gone. He's back to himself, as evidenced below: (sorry they are so dark)

Playing the pot:

Playing the pot Part 2:

Couch Diving:



Meanwhile, my procedures have gone off without incident. The needle biopsy revealed nothing we didn't know already: I have fatty tissue in my breast. It's a shocker, I know. To get to the bottom of it, we just decided to take the lump out, no matter what it was. That was done on Friday morning and now I get to wait yet another week for them to tell me something else. Friday was a nice day of rest with me sleeping off a demerol-induced haze. Demerol makes me not even know I have a breast, let alone that it was cut into earlier in the day. As the demerol wore off, I down-graded to Vicodin. I thought it was somewhat sad that Samuel and I were on Vicodin at just about the same time. He got some for his bar-in-the-mouth incident. Recovery has been pretty quick and seems to be going fairly well.

This is completely off the subject, but I was just thinking... I passed a place today that was called Valerie's Hair Creations. I wonder what Valerie creates out of hair? What kind of hair does she use? Sounds pretty gross.

A few weeks ago we had to have a plan B while Miss Amy was out of town. Our summer Plan B means Miss Amy's sister, Miss DJ, comes over. She frequently helps so is familiar with Samuel and his special needs. While at our house, she also took some amazing photos of Samuel. She is very talented!


Blowing on french fries with daddy:

Saying "cheese" with his first ice cream cone!

Tuesday, July 7, 2009

A long weekend

It's been a long weekend. Not just for the holiday, but other reasons too. 

Let me be honest and say, I wasn't going to talk about this, but there is probably someone else who is or will be doing this at some point in their lives. At any rate, here goes with the true confessions:

I'm 30. (Whew, that wasn't THAT bad!)

A few weeks ago, I found "a lump". The kind of lump women don't like to find. I didn't think it was really bad, but I just wanted to hear someone, who is closer to an expert than I, tell me it was nothing. So I scheduled a doctor's appointment.

I went in for some screening tests and mammogram. Let's just say, this isn't something I would enjoy doing regularly. Again, I'm just waiting for them to look at the results and say "this isn't anything you should worry about."

Instead I hear "This is abnormal and we highly recommend a biospy."

Me: not prepared.

So what made the weekend so long was having a biospy scheduled for Monday, yesterday. And let me just say one thing: 30 is too young for someone to have TWO mammograms within a month!

I'm still waiting for the latest expert in my life to tell me this isn't something to worry about. I'm just remembering, however, I know the Ultimate Expert and He has reminded me that "He was pierced for our transgressions, He was crushed for our iniquities; the punishment that brought us peace was upon Him, and by His wounds we are healed." It will all be OK.

Let's talk about Samuel.

He is doing great. I can't believe I let him play in McDonald's Playland (a.k.a. GermLand) yesterday for longer than 30 seconds. I CAN believe, however, than I pretty much hosed him down with hand sanitizer every time he came out and before we left. It was a friend's birthday, so this special occasion will probably be the ONLY time we will be in there. I was very impressed with his fearless ability to climb and stand up to the bigger kids there playing with him.

This is the ONLY hat he will wear for longer than 3 seconds. It's so cute!

A few weeks ago I had decided to give up trying to keep him from getting the pots and pans out every time we were in the kitchen. He gets them out, I put them away, it's this fun cycle we have going. I decided I don't care that I have to wash them when I want to use them. But Samuel surprised me. He took them all out play while I was working on other things. A few minutes later, I looked down to make sure not to step on a pan and, to my surprise, there weren't any in the floor. Figuring he had taken them all to the other room, I went around the corner to find his trying to close the cabinet door. He had put all of the pots and pans BACK in the cabinet where he found them, he just couldn't get the door completely closed because there were just a few handles sticking out, as you can see below. I'm so glad my requests to "put it back where you found it" haven't COMPLETELY fallen on deaf ears.
Speaking of the little munchkin, I better go take care of him. My evenings are getting shorter and shorter, it seems, since he's napping less and less at Miss Amy's.

Wednesday, June 24, 2009

Tuesday, June 23, 2009

whoever said little boys are like old men...

...had it right. Here is my little old man, crying because he can't reach the fruit and yogurt parfait. What's that on his feet? Why, it's white socks and blue crocs!


These crocs were purchased for Samuel's friend, Hudson, about 2 years ago. Hudson wore them and wore them and wore them some more and when he finally grew out of them, they were passed on to Samuel.

We discovered them in the closet this morning and since Samuel has been obsessed with shoes lately (he wants to wear them with his P.J.s to bed!) I put them on him. They, of course, were too big, but he insisted on wearing them. I put the socks on thinking, "I'll just put his sneakers on when we get downstairs" then the crocs went back on his feet. He was so proud of them, he would NOT take them off and I just figured is wasn't a battle I wanted to fight. He won.

White-socks-with-sandal-wearing old men of the world, please welcome the newest member to your club: Samuel Kelley. 

Friday, June 12, 2009

thankful

Just discovered a saved draft from last week. Thought I'd pass it along. It's still true, so why not? Just a little bit of old news...

I'm am so thankful it's Friday. This has been a busy week! Up early for boot camp, which has been a great release for me lately, then up late with VBS at church. And we haven't even been every night; only 2. But it's made those 2 days very long!

Kevin (DH), has been to VBS more than I have but we all went on Wednesday night. It was great! The team who has organized has really outdone themselves again this year!

That being said, Samuel is too young for VBS :( . He just doesn't understand the games, or even staying with the group he is supposed to be with. I guess there is a reason the youngest kids they register are 5. hmmm...

Without going into too many details, our Wednesday night trip to VBS was cut short. Little guy was very sleepy and had about 3 head bonks too many (again, touching on the point, he's too little - people didn't see him behind doors and plowed him down). So we left. On the way home, while he was resting/recovering, I was thinking about how it will be in a few years when he IS old enough to enjoy VBS along with all the other crumb-cruncher, germ slathered kids there. How will it work when snack time comes around and he has to take enzymes before snack? Am I going to have to provide applesauce and a tutorial on administering meds to my child just before snack time? Maybe he'll have a buddy to help him every night.

All of this reminds me of the book we were given on diagnosis day, talking about experiencing "acute grief" from time to time, like when seeing a chubby baby in the grocery store and grieving that your child has a difficult time getting those chubby thighs. Now, every chubby-thighed child I see, everywhere, brings on those thoughts of "Samuel had chubby thighs for a day or two." I guess VBS brought on some acute grief the other night. 

Anyone else ever experience this? I'm sure other CF Mommees do from time to time. How do you get through it?

Monday, June 8, 2009

A big weekend


What a great weekend to follow Samuel's test on Friday!

First, Samuel's test on Friday went very well. There have been improvements since our last IPL 10 months ago. Everything is "normal" and we couldn't be happier. Well, we couldn't be happier with the results. All celebrating ended with the ice bath Samuel got when we were trying to wake him up after the test. When he doesn't want to wake up, just leave him alone! :)

Also last week, Samuel's 18 month check-up (a month late) complete with pokes. 3 pokes and he cried longer this time than ever before. Not just crying from the pain but from a broken heart and hurt feelings. I felt bad for him.

Samuel hamming it up at the doc's office while we were waiting:


This past weekend we had a first. Samuel's first hair cut. We've been getting lots of grief over his mullet but, really, I don't care what others think of his hair. Clearly, since we haven't cut it for the last 19 months. But it was getting very long in the back...so long it was getting tangled up all the time. It looked like he had bed-head all the time. And I will say, if it had been a little curlier, there is no way a pair of scissors would have touched his head. All in all, he did great! He wasn't too hip on the idea of being buckled into the fire truck he was sitting in, but he got over it pretty fast. He was very comfortable in the place, playing video games and all the other toys they had there.

Admiring himself in the mirror.
In the fire truck. Complete with a cape.


In: a baby.

Out: a little boy.

This weekend he also got a hold of a pen. Nothing new, but he has never used it before either. I wouldn't let Kevin wipe his leg off until I could take a picture.

Samuel has been learning all kinds of new stuff lately! Seems like I say that every time. But it's true. At his well-baby check, they were asking how many words can he say and does he make any animal noises yet. At the time he didn't but that changed in about a day. By the end of the week he was barking like a dog. "Samuel, what kind of noise does a dog make?" "Woof Woof Woof!" So cute. At a friend's house, he was chasing their little dogs around, barking at them. By the end of the night, he was barking at their cat too. Fine by me, I don't care for cats so much. If a barking toddler keeps them away, bark on!

As for the words he says, well, it's not too many. However, he is learning how to communicate in other ways. I will whole-heartedly encourage new parents to teach your baby sign language. Samuel is a signing sponge! He signs all kinds of words: more, eat, drink (while saying "juice"), candy, please, thank you, cheese, airplane, ball, bird, and his latest, shoes! (Definitely his mother's son).


Eating grilled cheese. Well, eating the cheese out of the middle...while standing up in the high chair. A good shot of his crazy hair.
My brother, Andy, his lovely wife, Morgan and baby Will. And cousin Samuel.

Not sure whose kid this is that fell asleep at Olive Garden.
Thanks for checking!

Tuesday, May 26, 2009

It just hit me

I said I would report Samuel's weight but I didn't.

Samuel gained a pound and a half since his last visit! Something must be said for Hostess blueberry muffins...

Next, we have IPL on June 5. You can read more about his last IPL here. More updates later. With pics.

Wednesday, May 6, 2009

no!


It's true!

We've been having lots of fun with Samuel lately. He's really learning LOTS and it seems like he's changing and growing every day. He loves to point out planes and helicopters in the sky and has quite the eye for them. He can spot them from far away! It's really cute to watch him study the sky, see something of interest, then point up and say "See?" We are working on teaching him to say "airplane" but haven't gotten so far yet.

For about the past 2 weeks he hasn't been eating. Not too cool since we, well, he, has to weigh in tomorrow at the CF clinic visit. I'm hoping he breaks his 22 pound plateau. It seems he's been 22 pounds for the past 6 months. Why hasn't he been eating? Well, it appears he's getting 4 new teeth. I'm not sure how many there are in there now. I should count the bite marks on my legs, since that's where he's been biting me lately. Only me. He doesn't bite anyone else. I'm almost thankful for that, really. That's probably the quickest way to get kicked out of Miss Amy's house. :) The other day I was standing in the kitchen making dinner and he leaned over to bite my leg. I told him to find something else to do and so he laid on his tummy to get a better angle to bite my big toe! I couldn't believe it! The eating thing has been getting better, though. Last night (Cinco de Mayo) he was enjoying his staple, bean dip. Yum!

What else is Samuel learning? He's learning where his body parts are. He knows his nose, ears, eyes, toes, mouth and we are working on the fingers. He's also learning how to jump, which is so cute. He gets his whole body involved but his feet don't leave the ground. He is able to "jump" on command. Very funny!

It's becoming clear that Samuel hears the word "NO!" waaaaaay too much. I have to admit, it's not easy to say much else sometimes, but when thinking about it, it's a great learning opportunity to teach him what we want him to do, not just say no. For example, a staple line heard during meal-prep time would be, "Samuel, we don't play in Lucy's food and water bowls. Those are hers." Over and over and over again. Until I put up the gate.

So why do I think Samuel hears the N-word too frequently? Well, it's a known fact that when he is sleepy, he starts to hit. Not very nice. "We don't hit mommies, Samuel We hug and kiss mommy!" Last night, he came over and slapped my knee, then looked at me, pointed to my face and said, quite loudly, "No!" He could also say "Stop!" which comes out more like "Bot!" but still the same thing. It was very hard to hug and correct in love and not laugh at him, but laughing will only encourage the behavior, something I don't want to do.

Other things going on? We are starting to think about what we want to do in our back yard since it's full of dirt, weeds, and dog poop right now. It's a blank canvas. I've got this great idea to install a splash pad! Better than a pool on so many levels. It's been consuming my thoughts for the past few days. 

Pray that Samuel breaks 22 pounds tomorrow. I'm not sure how that will happen after 2 weeks of minimal calorie intake but miracles still happen. If it does, I'll  be sure to post the happy news. If not, I'll probably post that too.

Thanks for checking in!

I almost forgot! Team Samuel at the Great Strides walk! We did great, had fun and were successful. Still getting a team total, but thanks to all who participated!
Kevin Kelley, Lori Kelley Woods, Brenda Kelley, Audrey Sullivan, Tabitha Alexander, Suzanne Francis, Grace Nakazawa, Mike Gentry, Daniel Gentry, Lisa Sifuentes, Eddie Sifuentes, Alexis Sifuentes, Justin Tullock, Delaney Tullock, Amy Tullock (in spirit). Others who are really helping lately are Sandra Ramirez and Ashley Ramirez. Thanks to all of you! It's very touching to have your support and participation. All who donated to our team, thank you thank you thank you! You can be proud knowing your donation is helping to make astounding differences in research and development.

Other interesting pictures:

Chocolate pudding face


Easter Sunday

Wednesday, April 22, 2009

Market Research

Market Research Opportunity

SEEKING: PATIENTS WITH CYSTIC FIBROSIS &

CAREGIVERS OF YOUNGER CF PATIENTS

EARN $50.00

We are conducting studies on the care of cystic fibrosis (CF) in the United States and are looking for adult (18+) patients diagnosed with CF - or the caregivers of younger patients to join our research panel.

-Participating in this research will be an important contribution towards efforts to advance the quality of treatment and care for those living with CF!

-Qualified participants will earn $50.00 plus the opportunity to earn more money by participating in future research studies.

-To begin, we will need to ask you a few preliminary questions to see if you qualify which will take about 5 minutes. To contact us:

· Send an email to CF_Panel@wwmr.com with your name and telephone number, and we will call you back, OR

· Call Michelle Nordstrom toll free at 1 (888) 947-2339 ext. 112.

· Be sure to mention that you heard about this study from: Erica Kelley's blog


Some details about the research panel:

-Any market research projects will be optional and you will be compensated for your time. Studies might include obtaining feedback on CF medications or suggestions to improve educational brochures.

- For in-person market research studies that you choose to participate in, all surfaces will be disinfected before and after interviews to reduce risk of cross-infection. Interviews will be spaced so that CF patients will not come into contact with one another. In addition, patients will not be asked to handle any materials that have been handled by other patients.

- The panel will never be used to provide promotional materials or to sell anything, and you can opt out at any time. Your information will be held in the strictest confidence.

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