a day in the life of a CF mom

Needle? What needle?

2010-11-30T15:36:00.000-08:00

No sooner did we finish giving thanks did Lucy have a clinic day. There were a few things that I really needed to discuss yesterday with her whole team of medical professionals:

-Lucy has had a steady rattling cough with no other symptoms for about two weeks now.
-She has had stomach pains, increased poop frequency and amount despite being constipated, and decreased appetite for about five or six days (including on Thanksgiving Day. She ate only apple cobbler al a mode once all day). Let me just tell you that being constipated AND having painful, bulky movements is what leads to all of her recurring rectal prolapses. It's not pretty, and only large amounts of Miralax seems to be helping.
-I would like to pretend that I am the responsible parent and get Lucy tested for any pet (dog/cat) allergies before she asks Santa for a kitten because he may or may not oblige her by bringing a furry friend this year!

The clinic visit was an extremely long four hours because she was due for a routine yearly blood draw to check her vitamin levels (I'll get to her amazing bloodletting story in a minute).

This clinic visit was a good one with a few disappointments sprinkled in...

The good news is that her weight is up a bit. She is just under 31 pounds which puts her at the 55% range for her age. She didn't grow in height (38+ inches) in the last 3 months which the clinic dietitian was not too concerned about because she is still in the 50% range for her age group.

The bad news from this visit is that Lucy is being put on a 14 day run of the oral antibiotic Bactrim to clear up her persistent cough. This really upset me for just a bit because I was so proud that she had not been on any oral antibiotics since January! She was given a throat culture during this visit, and the results from that should be in next week to check if her Pseudomonas is back. Lucy has colonized and cultured Staph since she was very young. We think she picked it up while she was in the NICU, and we now only treat the Staph with antibiotics if it becomes symptomatic. I really do think this is just another bout with Staph, but only the culture results with determine that. So with the cough and antibiotics, comes increased Xopenex and vest time everyday. She never seems to mind the extra half hour everyday as long as she gets to watch Caillou or Mickey Mouse Clubhouse on TV!

I will be calling to make an appointment with her pulmonologist this week to talk about getting her allergy tested for pet dander,and then I'll be giving Santa the 'okay' for a kitten. It is so nice that her pediatric pulmonologist is also an allergy and asthma specialist! How convenient for us!

...And this is the part of the blog post where I gush about how wonderfully lucky I am to have such an amazing little girl to call my daughter...

I have never been one to be squeamish about medical procedures, and really, I'm kinda fascinated by them (that's one of the reasons why I'm going to school to be a nurse, I suppose!) I am really go with the flow and matter-of-fact about all medical processes when I talk to Lucy about them, like it's no big deal. I buy children's Body Parts books and use LOTS of dialog to help explain what our body looks like on the inside, and what our parts are supposed to do when functioning correctly.
In short, I have tried to desensitize Lucy at an early age to the 'blood and guts' we have in our body so that when it comes to actually seeing them in real life (not in a book) she is excited to see it!

When I told her that she would be getting her blood taken out of her arm so they can test it for the 'monkey vitamins' that she takes in the morning, she was so excited. After over an hour of waiting in the pediatric lab waiting room, we finally got called in by the phlebotomist. The woman looked at us and Lucy's chart and realized that she was only 2 years old, and called in another technician to help hold her down. Little did they know, Lucy doesn't need any holding, just a clear view of the blood vial!

After a bit of arguing (she wanted to sit all by herself, but couldn't reach the table to set her arm flat), she finally got up onto my lap. I told her to instruct the lady which arm she wanted blood taken from, and she said, "This one" while pointing to her left arm. I explained everything as it was happening while gently holding her right hand. I told Lucy that the lady was tying the tourniquet around her upper arm, and that it will feel really tight. She said, "Okay. mommy." When the needle lady finally felt a vein that was suitable, she asked me if I should hold her a bit tighter. I told her 'no' and that she would be just fine if we only explain everything. No surprises. The other woman, who brought in to be a 'helper,' held Lucy's left arm to keep it steady. I told Lucy that it might hurt for just a second when they stuck the needle in, and then we would be able to see her blood go through the tube!

She never made a peep, mouth open gawking, as she watched the needle go into her arm. The lady adjusted the needle only one time until she found the vein, and then Lucy watched in awe as the blood went through the tube and into the vial. I talked to her the entire time about what color her blood was, how cool it looked, and what they were going to do with it when they were done. The only thing she was worried about was whether or not she was going to get her stickers when it was all over! The two phlebotomists declared that Lucy was the easiest two year old that they had ever taken blood from, and I declared that she was the coolest because she loved looking at her own blood!

Lucy was over the moon when they gave her TWO stickers and a miniature deck of Disney princess playing cards! And with that, we stand in the face of cystic fibrosis, and say, "Bring it! Lucy can handle it!"

Bacon And Chocolate!

2010-11-24T20:39:00.001-08:00

Every chance I get, I try to cram as many calories that I can into Lucy's diet.

Cystic Fibrosis effects the way she digests fats making it nearly impossible to absorb fats and calories without the help of pancreatic enzymes in pill form that she takes by mouth every time she eats food. Even with the enzymes that she so readily takes before every meal and snack, there is still fat that doesn't get absorbed. It ends up in the toilet in less than 24 hours. Getting in as many calories as I can into her diet is important so that her chances of absorbing is increased with every bite and every calorie she intakes. The more the merrier!

It can be incredibly difficult to get a preschooler to eat, so when you find something that they are receptive to, you just need to run with it. I found a food combo that Lucy just devours. It's not a likely combination, but it seems to go together just as easily as peanut butter and jelly. The salty and sweet pair well together.

Bacon and chocolate!!!

About a year ago, I introduced Lucy to Nutella sandwiches. One day I was making her one, and I had some left-over bacon from breakfast that I crumbled inside the chocolate hazelnut sandwich. She gobbled it up as if I hadn't fed her in weeks. Bacon and Nutella sandwiches are now a part of her normal lunch time cuisine. Salty AND high calorie! Just what she needs!

Then, this summer, we had gone to the Sacramento State Fair where they were serving up chocolate covered bacon. Lucy ate so many pieces with a pleasantly puzzled look on her face the entire time!

My friend posted a recipe on her Facebook page the other day that was right up Lucy's alley, and I knew we had to try it! It's a super easy recipe and makes about 9 cookies. They're sweet, they're salty, and they're delicious!

Bacon Chocolate Chip Cookies!

7 strips bacon, cooked really crispy, dried on paper towel
**(SAVE BACON GREASE!!)
1 cup, plus 3 tablespoons all-purpose flour
1/2 teaspoon baking soda
3/4 stick butter softened
1/3 cup white sugar
1/3 cup light brown sugar
1 large egg
1 teaspoon vanilla extract
2/3 cups chocolate chips (I used semi-sweet Chunks!)
optional: chopped nuts

-Preheat oven to 350 degrees.
-Chop up your crispy bacon finely.
-Mix together flour and baking soda
-Cream together butter and sugars in a large bowl. Add egg and vanilla extract, and beat until just blended. Add the dry ingredients; beat until just incorporated. Be careful not to over beat! Stir in the chocolate chips, bacon, and optional nuts.
-Drop a large tablespoon of dough onto an ungreased cookie sheet.
-Bake for 10-12 minutes until golden brown on the edges and lightly soft in the middle.
-Let cool on a rack for only a few seconds and eat HOT! Store any left-overs in a container and refrigerate.

When I make these cookies again, I might be doubling the recipe and maybe adding a few extra pinches of kosher salt to the dough. Lucy just craves the salt, and it would be a great way to get the sodium in!

**The original website suggests saving the bacon grease to drizzle onto the top of fresh popcorn. What another great idea to add calories for my kiddo!

Enjoy the cookies! We did!

Even Mommys Make Mistakes

2010-11-23T10:28:00.000-08:00

Yesterday was quite eventful and incredibly embarrassing for me, but Lucy had a blast, and was calm, cool, and collected the entire time despite my absent-minded mistake.

We were on our way home from Target, and I had just pulled into our parking space right in front of our apartment complex. I set my Blackberry and my keys on the passenger seat, and got out of the car.

Instead of pushing the automatic lock button up to unlock the all the doors, I pushed it down without realizing it.

I locked Lucy, my keys and my phone inside my car.

I waved at Lucy through the window, told her what a silly mommy I was, and that I was going to use the neighbors phone to call someone to get her out of the car. I called my mom and told her to call AAA for me. It would be free for a greasy tow truck driver to come break in to my car for me.

No big deal.

I'm standing on the passenger side of my car talking to Lucy for no more than 6 minutes. I was trying to get her to unbuckle herself, and get up to unlock the door for me, but the bottom buckle on her carseat is childproof. Her little fingers just couldn't get it, but she had fun in the attempt. She unbuckled the top buckles of the five point harness, and tried as hard as she could to reach over to the door lock. She was about three inches off from reaching it. She was really stuck.

Lucy and I were chatting through the glass when an ambulance, sans lights and sirens, pulled up on the street by my house. The EMT got out of the ambulance and strolled over to my car.

Me: "Um, you're not here for us, are you?"
EMT: "Yes, we got a call from dispatch that there was a child stuck in the car."
Me: "Yes, but not really stuck. More like I just locked her in. This is so embarrassing. You really didn't need to come out here."
EMT: "AAA has to call dispatch if there is a child in the car. We always come out if the sun is shining."
Me: "She's doing great. I was just trying to get her to take her seatbelt off, but it's too hard for her." (Lucy smiles and waves at Mr. EMT)

Yes, the sun was shining yesterday, but it was a cool winter 53 degrees Fahrenheit here in California. Lucy was in no danger of overheating. She was happy and excited that an ambulance was there just for her...to my chagrin.

EMT: "She is doing just fine. I'll just wait in the vehicle until Fire gets here."
Me: "What?! You're kidding, right? Why do we need firefighters? This is so incredibly embarrassing. All I wanted was a tow truck"

The EMT guy went back to his ambulance to wait, and 1 minute later a fire engine came pulling up. To add insult to injury, one of the three firefighters was a friend of mine, who knows Lucy pretty well. She was so excited to see her friend, and was smiling and talking to everyone though the car window.

The firefighters quickly broke into my vehicle without breaking any windows, and set Lucy free. They actually timed themselves, trying to beat one of their previous break-in records. They managed to get Lucy out in about two and a half minutes. She had a smile ear to ear.

Her firefighter friend, Josh, scooped her up and took her over to the engine for a quick look around the rig, and gave her an entire stack of Junior Firefighter sticker badges.

She didn't stop talking about it all day, how "Mommy got her stucked in the car and she was rescued by a firetruck."

Now, if you all don't mind, I'll take that Mother Of The Year award. *Taking a bow*

Sorry about the quality of this photo. It was taken by my just-rescued Blackberry!

Wordless Wednesday

2010-11-10T16:47:00.000-08:00

Marching to the beat of her own drum...

Disney On Ice

2010-11-09T14:32:00.000-08:00

My mom took Lucy to Disney On Ice. I was really bummed out that I had to miss all the fun Disney skating action, but I had to work that night.
Lucy went dressed as Cinderella complete with sparkly silver shoes.
My mom said she sang the Mickey Mouse Club House theme song the whole way there in the car.
She was more than happy to pose in front of the icy stage.

When all the characters began entering the stage she waved and said 'Hello' to all of them, calling them out by name.

Lucy was completely enamored by all the characters.

She was very concerned when the evil Ursula, The Sea Witch, came out on stage.
OH, NO!!!!!!

Such a special night for both my mom and Lucy!

Halloween Flashback

2010-11-08T19:00:00.000-08:00

The week before Halloween was our last week in the Parents and Tots program at WPNS, and it was also our Halloween celebration. All the kids dressed up in their costumes and came to school.
Lucy had decided in September that she wanted to be a Unicorn, so I gave her a couple of weeks to really ponder it some more because kids always change their minds.
She did.
We brought home this witch hat for her to put in her dress-up pile just for fun because it was only $1 in the Target dollar bins, and that's when she announced that she would like to be a witch for Halloween.
And what a cute little witch she was!

(Pay no attention to the crossing of the legs in this picture! She was doing the potty dance!)

Camping In The Rain

2010-11-07T22:48:00.001-08:00

At the end of October, Lucy and I took a four day camping trip with my dad and his wife, Rhonda, over to the California coast town of Bodega. Luckily, we had gone in their fifth wheel trailer (if someone can tell me why it's called a 5th wheel trailer that would be great) because it rained nearly the entire trip.

I am grateful for the warm, dry space that the trailer provided during the storm, and when I say space I mean roughly 250 square feet for the four of us. It was definitely cozy, tight quarters, but it made for some great memories and laughter!

We had about four hours throughout the whole trip where the rain ceased long enough get bundled up to go outside and play. We were able to squeeze in some beach time and some exploration walks around the campground, but that was about it.

Lucy had an amazing time hanging out with her grandparents, playing in the sand and swinging around the long seaweed she had found washed up on the shore, and finding as many deer and raccoon tracks in the mud as she could. I had a good time sitting in the trailer constantly cooking and eating! I had made some homemade chicken soup from a whole chicken I had roasted at home just days before we left. The carcass came in handy for making the broth. It made a very hearty soup that lasted the whole trip. It was also my dad's birthday the day before we left, so I made a chocolate cake for a little belated celebration. Of course, Lucy helped him blow out the candles.

It was cold and wet, but we sure did create many sweet memories...

A Monster

2010-10-12T12:49:00.000-07:00

A snot monster to be exact.

The weather is changing. For the last two days, it has been extremely windy here in the Sacramento Valley and not the kind of wind that brings in a wonderful rain storm to wash all the nasty out of the air.
This is a dry, hot, dirty wind that kicks up all the dust, dirt and other particulates and gusts it right into your nose and eyeballs. It's a gritty mess.
Ever since we went to the farm, Lucy and I have been miserable.
Sneezy, stuffy, and snotty.
I know, from many years of allergy experience, that I will fully recover as soon as the weather finishes changing, and the high winds cease, but I worry about Lucy.
In most cases, whenever she has a runny nose, whether it's a 'bad bug' she's fighting off or just seasonal allergies, it always manages to drip down (postnasal drip) into her lungs giving her a yucky, loose cough. It's the cough and excess mucus in the lungs that worry me.
As of today, I decided to increase her vesting time, and do an extra Xopenex nebulizer during the day to help keep her airways open during this high allergy time.

Lucy had zero complaints about this, and was adamant about watching Mickey Mouse Club House while she did her treatments. Yes, Lucy actually enjoys sitting in her shaky vest for 30 to 40 minutes at a time!
I am a very proud, sneezy Mom!

Trip To The Farm

2010-10-11T13:01:00.000-07:00

We spent a great day at the farm that delivers our fresh organic produce.
It's local, it's organic, and it's delicious!
Farm Fresh To You is in the Capay Valley about 30 minutes from our home. It has wonderfully fertile soil that will keep up with seasonal crops year round. The farm was founded in 1976, is now 300 acres, and is still family owned and ran...and they deliver right to your home or office!
We were able to go on Saturday to check out where our fruits and veggies come from.

The fig orchard was beautiful.

We had a great time walking down to the pumpkin patch to pick our very own pumpkins from the vine. Lucy found a pumpkin that was just her size. We hitched a ride back on a trailer ride with hay bales as it was pretty warm that day. We leisurely walked parts of the farm for a couple of hours. They had a great band playing under the oak trees, fruits and veggies for sale, and a shed with some farm animals that Lucy just loved to talk to!

What a great day at the farm!

It's Pumpkin Time!

2010-10-07T20:27:00.001-07:00

Fall is finally here!
According to the calendar, the autumn solstice was on September 22, but it was still crazy hot here in Northern California. I was in no rush to decorate and prepare for any Fall festivities when it was still 100 degrees outside.
We decorated the house in our Halloween and Fall decor this week, and went on our first trip of the season to the Bobby Dazzler pumpkin patch. Lucy had the best time picking out her favorite gourds and pumpkins for our front stoop, and pulling the wagon in the field.

A Bird Named Cookaloo

2010-10-03T16:26:00.000-07:00

Lucy's imagination runs wild. When prompted, she could tell the craziest stories for hours, and make up the funniest names all on her own. 'Kookaloo' and George are the stars of this tale...

The Artist

2010-10-02T01:20:00.000-07:00

We were hanging out in the living room tonight.

I was ~~tearing up over~~ watching the latest episode of Project Runway when Lucy approached me with a blank sheet of printer paper and a pencil. She asked me to draw a picture of her and I.

So I did...

She grabbed the paper and pencil from me, said, "Thank you!" and disappeared over to the corner to play independently as she often does.

As I was cleaning up her tornado of a mess at the end of the night, I came across the piece of paper with my drawing of Lucy and Mommy, but she had made her own revisions. She added some other 'characters' to the paper in what looks like TWO OTHER PEOPLE!

I was amazed and shocked that my two year old could depict such an accurate human form: a head, two legs, two arms, hands and feet! I am certainly turning out to be one of those moms that is absolutely amazed at everything her child does. The mom who insists that her child is a genius. Yup, that's me! My kid, the artistic genius.

When I asked her who or what it was that she drew next to us, she said,

"It's a POTHOLE!"

Um, what?!

I Love You, Stinky Face!

2010-09-30T01:15:00.000-07:00

Just a few days ago, Lucy received her Scholastic Book order from school, which included 15 brand new books for us to read. At the time that I ordered them for her, I never fathomed the idea of having to read all 15 books at once.

In. A. Row.
My tongue was numb by the 7th book, but so worth the smiles from her!

Out of the 15 that we received, she already has her favorites, and so do I. We have decided that
I Love You, Stinky Face by Lisa McCourt
is our favorite book in the bunch.

This book is about a devoted mother's love for her child. As she tucks her child into bed, the imagination of this kid leads to all sorts of crazy questions like, "What if I were a super smelly skunk, and I smelled so bad that my name was Stinky Face?" The mother, without flinching, reassures her child that she will always love her! No matter what!

If Lucy and I could write a page of our own, a CF version, to insert into Lisa McCourts wonderful book about a mother's unconditional love for her child, it would go like this:

But, Mama, but, Mama, what if I was a girl who had Cystic Fibrosis with daily breathing treatments, medications, nasty poop, and stinky farts?

"Then I would diligently sterilize your nebulizer cups and mask, and faithfully put Caillou on the television so that breathing treatments are a breeze and your lungs remain healthy and pink. And I would show you how to take all your medications to make sure that your poop wasn't as nasty and greasy, or your farts as stinky.
And I would whisper in your ear every chance I could get,
'I love you, my sweet, brave CFer.'"

It's no wonder this is one of our favorite books.
My love is unconditional, and I would do anything to reassure her that I will love her through it all!

Here I Am...

2010-09-28T12:51:00.000-07:00

Turns out that Lucy's one night of sleeping alone was a fluke. She has slept with me the last five days showing no interest in sleeping in her own bed. In fact, she told me her room was scary. She couldn't explain to me why the room was scary, but she insisted that it was. No big deal. Looks like the sleeping beauty will be in my bed for just a while longer.

It occurred to me the other day why I had not been blogging very often in the last couple of months. Lucy is doing so incredibly well that I feel like talking about it aloud may just jinx her in some way. That sounds so ridiculous as I write it, but we have both been enjoying the time NOT doing antibiotic treatments. We had a fabulous antibiotic-free summer!

Lucy has not been on any oral antibiotics since January, and has not had to do Tobi (inhaled antibiotics) since mid-June!

So here I was, jumping for joy silently that Lucy's intestines are finally getting back on track after starting Zenpep and Prilosec, and having her intestines not be irritated by oral antibiotics.

Here I am, getting incredibly nervous as Flu and 'sick' season approaches us quickly. She is a little more vulnerable this year because she will be at her preschool more often (even though they have a very strict sick policy that if anyone in the child's household is sick, not to bring the child school).

Here I am, just hoping that the all the hand washing, hand sanitizing, and the avoidance of sick people will get us through the winter unscathed, and her Psuedomonas will not show it's ugly face for a long time!

Here I am, sanitizer in hand, superstitiously looking for wood to knock on as we head into germ season!

Girls Just Wanna...

2010-09-23T02:43:00.000-07:00

...Have Fun!
Lucy loves to dress up in very silly things.
Items like:
a pink wig,
feathered 'glass slippers,'
Mardi Gras beads,
silk Hawaiian leis (worn as belts),
layered multicolored skirts,
and
diamond rings made of not-so-precious stones.

She makes me laugh out loud!

Sleeping Alone Now?

2010-09-21T11:25:00.000-07:00

Sharing a bed with Lucy has been the one of the easiest decisions I've ever had to make about parenting, so much so that it wasn't even really a decision at all...it just sort of came naturally. From day one (day one being the day we brought her home from the NICU at 23 days old) she has slept in the same room with me. I had a co-sleeper/bassinet attached to the side of my mattress, but she never really slept in it!

It has always been easier to have her in the bed right next to me, not only for easy breastfeeding (because I was able to lazily whip out one of the 'girls,' and fall back to sleep while Lucy nursed), but it was so incredibly nice to have her near me. After not being able to have her near me for the first three weeks of her life while she was in recovery in the hospital, being able to listen to her breathe while she slept, and being able to tend to her needs immediately was what was important to me. I felt like the bonding time we were supposed to have directly after her birth was taken away from us, and we had a lot of catching up to do.

For the last two and a half years, Lucy has been sleeping in my bed. We are comfortable with it, and we sleep soundly. I have become accustom to having my child's foot in my face while I sleep. It has become incredibly normal for her snoring and breathing to lull me to sleep at night. I can probably count on my hands how many times she has slept in her own bed, and most of them were naps or if I were working late.

Having Lucy in my bed at night has become the norm for us.

Until last night...

We were lying in bed in the dark telling stories, and she suddenly popped up and said, "I'm gonna go sleep in my bed."

She crawled out of bed, and I followed her down the dark hallway to her very own room. She climbed into her bed with two stuffed animals in tow, and asked me to cover her with a blanket. She requested that I leave her fish tank light on so she could watch them while she slept.

Really? So grown up!

I felt so proud of her for wanting to go on her own with no forcing and no fear. She came down that hallway into my room five times before she finally fell asleep in her bed. Each time she came in, she would either say that she needed a kiss, or needed me to cover her up again. Each time, I would follow her back into her room to tuck her in, give her a bunch of kisses, and then return to my own room. Eventually, she fell asleep. It was so quiet and uneventful, really.

I admit that I slept like a log last night...in the middle of my bed, with no accidental headbutts, no toes in my nose. She woke up early, at the crack of dawn, and came running down the hall. She jumped in my bed, nursed, and we cuddled for about 45 minutes before getting up to start our day.

It worked out well for both of us last night! I just wonder if this will be a recurring theme, or if she was just testing the independent waters.
I guess I'll find out tonight!

Fever Day

2010-09-14T13:34:00.000-07:00

This week Lucy battled a 24 hour fever like a champ. For one day, she was lethargic, didn't want to eat anything and had a fever of about 100 degrees. There was no signs leading up to this fever day, and then it was gone just as fast as it had came. No puking, no bad poop, no head cold! Just a fever and the body aches that come with that.

I didn't give her any medicine for her fever, like Tylenol or anything. I wanted to wait it out and see how she was going to fight it off by herself. She did well in the fight, and I am hoping it's just one more boost for her immune system!

She spent the entire day cuddled up in bed with me, watching movies, drinking water, juice and her personal favorite when she's sick...Mommy's milk! My little nursling really latched on for these 24 hours, not only for comfort, but for hydration and calories! I am so grateful I am still nursing Lucy, especially for times like this when I know she is getting calories and the things she needs when she is sick even without eating food.

And when she says things like, "I don't feel so good. Can I have some of your milk, please?" I just can't say "no!"

She is now fully recovered and back to her usual Lucy ways. She is running around again, being her sweet and sometimes snarky self...the Lucy we all know and love. NO MORE FEVER!

Improvement

2010-09-02T22:38:00.000-07:00

Lucy started taking a proton pump inhibitor (PPI) for six days now, and the improvement in her poop and stomach symptoms are increasingly getting better!

At the clinic visit last week we discussed what a PPI was, and how it would most likely help the enzymes work more effectively. We had discussed and decided to give her a PPI called Nexium, which is one of the newest PPI out on the market. It took nearly a week to get the prescription filled because both of Lucy's insurance companies didn't want to fill the Nexium.

The primary insurance company claimed that they wouldn't fill the Nexium because there are cheaper PPIs on the market...like Prilosec, Prevacid, etc.

The secondary insurance company that covers most of her "special" CF needs, like the Vest, nebulizer, x-rays, Pulmozyme, etc...didn't want to cover the PPI claiming that it is NOT CF related! Yup, you read that correctly. They don't think that a PPI/antacid is necessary for controlling cystic fibrosis. I fell out of my chair when our nurse practitioner told me!

SO, instead of beginning Nexium last week, Lucy started on 20 milligrams a day of Prilosec. We will begin with Prilosec to see if that works for her (which it is so far), and move up to twice a day if needed.

It's working so far, so I won't complain too much yet...

Lucy's poops have been great! No more anal leakage, no more prolapses, and her poop doesn't even float anymore (meaning that more fat is being absorbed into her little body)!

I can't even begin tell you how much easier and less painful it is for Lucy when grease doesn't leak out of her butt constantly...

She has not been in a diaper for 3 days now! BIG GIRL UNDIES! I'm so proud of her and her new partner in crime, Prilosec, that I could just cry!

Abdominal Photo Shoot

2010-08-28T15:10:00.000-07:00

We went to the radiologist yesterday to get x-rays done on Lucy's abdomen to check for any blockages or some poop that may need to be helped out with a little more laxatives. Getting x-rays done is one of the easier things that we do as far as doctor visits go.

In fact, Lucy loves to get x-rays done! She was anticipating it for a couple of days, talking about it constantly at home. She would ask me when she would be getting her "tummy picture" taken. We waited patiently in the waiting room yesterday for her very own tummy photo shoot.

Her name was called, and we were taken back into a hallway by a technician, who looked through a cabinet of hospital gowns. He led us into a "fitting room" where I shortly found out that he gave us an adult sized gown. I certainly wasn't going to chase him down for another smaller size because they always make her get done to her birthday suit anyway for stomach x-rays so they can get her rectum included. I took that adult sized gown and got a little creative with it. I felt like a I was on a ghetto version of Project Runway, trying to fit my petite toddler model with a cheap, cornflower blue piece of linen. I knotted it around her body and draped it the best I could, and even made her indulge me by walking down the hallway like it was a runway! She thought it was hilarious, but I expected a hospital version of Tim Gunn to walk in and tell me that he 'wasn't feeling it but to just work with what I have.'

Whatever...any thing to make time pass, right?

We got called into the x-ray room, and I placed Lucy sunny side up on the table. She was so excited to finally be getting her tummy picture taken! The technician instructed her to stay perfectly still, and she did! As the tech was taking the picture Lucy says, "CHEEEEESE!"

What a sweetheart!

We should be getting the results of the x-ray as soon as Lucy's GI guy takes a look at them next week. Worse case scenario is that we do another 3-day clean out with Magnesium Citrate and Miralax...not a huge deal. I'll keep you posted!

Summer Snack

2010-08-27T00:30:00.000-07:00

Lucy's favorite snack right now is our backyard tomatoes covered in LOTS OF SALT! They are finally getting ripe on the vine. It has been such a mild summer here in California that the tomatoes are ripening so late in the season. I still have green tomatoes still on the vine, and I hope we'll be eating fresh maters well into late October.

Lucy just waltzes into the kitchen, grabs a tomato out of the basket, and heads to the sink. She even requests salt, and I never hesitate to lay it on thick! She eats is up, juice dripping down to her elbows. Deeeelish!

Clinic Update

2010-08-26T00:44:00.000-07:00

Clinic on Monday went well. I have always loved clinic days. It may be a nearly three hour appointment (where I must juggle entertainment for a two year old all while discussing very serious medical jargon) with Lucy's CF medical team, but I figure since we only see them every three months that it averages an hour per month to catch them up and touch bases on what is going on with Lucy.

Like I mentioned here last weekend, Lucy's stomach has been so screwed up and not normal for her. She has always had more severe stomach issues than the lung issues all beginning at birth with the meconium ileus, but it seems to be getting worse as she ages. The rectal prolapses are becoming more and more frequent, her stools are greasier and more explosive and extremely painful for her.

The consensus at clinic is that she needs to go on what is called a PPI (Proton Pump Inhibitor). She will be placed on the PPI called Nexium. A PPI is the strongest acid reducer on the market today. The difference between something like over-the-counter Rolaids or Tums (antacids) to help with your acidic stomach after eating a huge burrito, and the Nexium (PPI) that Lucy will be taking up to twice daily is that the Tums just reacts by neutralizing the already existing acid in the stomach. Lucy's new medication will actually work to inhibit production of the acid in her stomach, knocking it out before it even gets released into her little tummy.

Here's what happens when there is way too much acid in her stomach, and why she needs to take it to relieve some of her symptoms:

The enzymes that Lucy takes every time she eats to help her digest food need to be in an alkaline (opposite of acidic) environment in her small intestine to work properly. If her stomach is making too much acid and the acid is being released from her tummy to her intestines, then the enzymes cannot work! If the enzymes cannot do their job then she gets bloated, gassy, painful, greasy stools, rectal prolapses, constipation, blockages in the intestine (poop unable to go anywhere), and anal leakage (grease).

With all that said...I HOPE THE NEXIUM WORKS! We had an appointment yesterday with the GI guy, and he ordered some x-rays to be done of her abdomen again to check for any blockages. We'll be going tomorrow morning to get "pictures" taken of Lucy's insides. She really loves getting them done when I tell her it's a picture. She smiles for it and everything!

Everything else about clinic was great! Her weight was still average on the percentile scale. Her weight did drop about 4% since the last time we saw the team three months ago, but we attribute that to summertime activities. She'll shoot back up during the holidays with all the goodies we bake around here! I'm not worried.

Blood Lines

2010-08-19T16:20:00.000-07:00

It was sometime last week...

Lucy was getting out of the bath, and she asked what the purple and blue lines were in her skin. I told her that they are veins that carry our blood all over our bodies to keep us healthy and alive. She then asked if there was blood in her tummy, her head, and her eyes, at which I said yes to all of them.

and DRUMROLL...

She then reached down to her naked girly bits, and asked if she will have blood there, too, like me!!!

I about died! I told her that she will someday have blood there like me...when she grows up. She said, "Okay, Mommy," and we moved on with our day.

I never imagined I'd be having "the talk" (or forms of it) as early as two and a half years old, but such is life. She definitely keeps me on my toes, and is so incredibly observant. She's one smart cookie, and I hope she keeps asking questions!

Burned Out

2010-08-18T22:35:00.000-07:00

Oh, how I despise when people don't blog regularly. I go to check for new posts and turns out it's been weeks since they've posted anything! Now I'm the culprit. The missing blogger is back! I was getting pretty burnt out there for a while. I didn't feel like writing. Didn't feel like spilling the goods to everyone, but I'm back now refreshed as ever. Here's what you missed...

The CFRI conference in San Francisco that I attended a couple of weekends ago was completely amazing. Not only did I learn many valuable things about CF and tips on how to guide Lucy towards the best life she can ever imagine, but I also got to meet in person some of the people that I have been chatting on the inter-webs about CF for support. The CF community is an amazing group of people...so strong and supportive and I am so proud to be a part of their group. What an honor it was to meet all of them, CFers and parents alike!

The last couple of weeks, during my bloggy disappearance, I was planning a fundraiser to benefit the Cystic Fibrosis Foundation. What a Team Lucy effort it was! We held a big spaghetti dinner with a BINGO and raffle. We sold 110 tickets at $15 each and had over 50 prizes all donated by local businesses and friends of Team Lucy. That night we raised $2,700 to go directly to CFF! It was such a fun evening for all of us. Lucy ran around with the other kids and even demanded that she get to use the microphone. She sang her ABC's and received a standing ovation from everyone at the dinner! Lucy is the opposite of shy, and soaked in every single moment of the attention. What a ham!

I started back to school on Monday at the local community college. I'm taking Child Development and a Human Services class. As much as I like learning and taking classes, I wonder where in the world did summer go?! Time seems to be rushing by so fast these days right before my eyes. Lucy is growing so fast. She speaks to me like she is a four year old, and says the funniest things. She makes me laugh constantly, so much so that I need to start writing all these "Lucy-isms" down so I don't forget just how witty and funny she is!

Lucy has an open house at her school on Friday where I will be signing her up for the Fall session of Parents and Tots at WPNS. Her first day is September 9th. We are both excited about it!

Lucy has a clinic visit on Monday. I really can't wait to discuss some things with them. She has been having more stomach issues even after I decided to increase her Zenpep dose from 5 to 6 at meals. I am going to go into some things here that might be to much information for some people, so stop reading here if CF poop talk is too much for you.

For the last couple of weeks, Lucy has been having some very nasty poop and what I call anal leakage, and 2 more prolapses. The anal leakage and sudden bowel movements make it especially difficult to potty train. She is doing really well trying to get to the toilet on time, but accidents do happen. One of her proplases happened the day before we went to the CFRI conference, and the other was just two days ago. She knows what it is now and tells me when it's "out." She says to me while sitting on the toilet after struggling to push out runny, greasy poop, "You going to push in my owie now, Mommy?"

It breaks my heart, but it is bittersweet for me. I really want her to be independent and proactive in her healthcare, and I want her to know the ins and outs of own her body. She needs to be able to know at an early age when there is something wrong with her body, so she can tell me...and eventually tell her doctors. This is the first step in that. She knows what is going on, she knows exactly what I am doing and why, and even at two years old, she is not afraid of any of it. What an amazing little gal I have! She makes my heart swell with love.

So at clinic, we will definitely be discussing all of her major GI issues that are still occurring, and if things are still left up in the air, I will be making another appointment with her GI doctor to find out what we can do about these prolapses and anal leakage!

On that note, I'm signing off! It's good to be back in the blog-o-sphere. Sorry about leaving you all hanging like that!

Spaghetti Dinner For CF!

2010-08-08T12:11:00.000-07:00

I am so sorry for slacking! This is my first blog post in so long! I have been extremely busy since I returned from the CFRI conference last weekend. I am putting together a Spaghetti Dinner and Raffle to all benefit the Cystic Fibrosis Foundation .

Saturday
August 14th, 2010
No Host Bar at 6pm
Dinner at 6:30pm

...Spaghetti Dinner...
PartyLite BINGO
Raffle Prizes

$15 for adults and $10 for children 3-10 years.
ALL Proceeds go to the Cystic Fibrosis Foundation!

Where:
VFW Post 1985
345 West Kentucky Avenue
Woodland, Ca 95695

There will be NO tickets sales at the door, so be sure to buy them in advance! Sales end on Thursday the 12th. Tickets are for sale at the VFW and The Stag in Woodland. I also have tickets on me, so if you need me to deliver, please email me!

knt81@aol.com

Can't wait to see you there! If you are unable to make it, donations can still be made to the Foundation by clicking here. Thank you for your continued support as we take huge steps towards a cure!

Miss Hiccup Gets Ready

2010-07-25T01:52:00.000-07:00

I went upstairs to get dressed to go to the grocery store, and I came down to find that Lucy had the same idea...

A Fair Day

2010-07-23T15:54:00.000-07:00

Yesterday, Lucy and I went with my mom to the California State Fair in Sacramento. We spent a lot of time going through all the exhibits and eating lots of high calorie food!

Lucy is no stranger when it comes to the salty and sweet combination of bacon and chocolate. She regularly eats Nutella and bacon sandwiches at home, so when we bought some chocolate covered bacon at the fair, she knew what to do! She devoured three pieces!

What kid doesn't like french fries? I don't know of one. Lucy had her batch of fries smothered in cheese!

While we were checking out the Fur and Feathers exhibit, Lucy was able to hold and wear a beautiful white and yellow Cockatiel. He was perfectly trained to open his wings for the perfect photograph. What a show-off!

In the horticulture exhibit, she stopped to smell the flowers. A lot. And even went so far as to kiss all of the veggies that were growing in rows. How very sweet of her!

And for the finale of this particular Fair post, we have a game of Where's Lucy? This game is similar to the Where's Waldo? pictures, but this takes place in the Toy Story 3 setting in the Animation exhibit of the State Fair.

Can you spot her among all of her favorite movie characters?

Lucy In The Sky With Diamonds

2010-07-21T22:34:00.000-07:00

Lucy's favorite song used to be I'm Yours by Jason Mraz, but now it's the classic Beatles song in which her own namesake may or may not have been inspired.

Here is Lucy's own rendition of Lucy In The Sky With Diamonds...

Terms Of Endearment

2010-07-20T16:57:00.000-07:00

HONEY...

is the term Lucy has been using instead of calling me "Mommy."

She says things like,
"Can you help me, Honey."
or
"Honey, I'm hungry."
or
"Good morning, Honey"
followed by a sloppy kiss!

This girl learns fast as to what really melts my heart and makes me giggle, and has crammed it all into one little word. She may have even used this new term of endearment to get out of trouble. The "I love you, Honey" coming from a two year old's mouth really packs a sweet punch. I could never be mad at her for long!

As for those horrible tantrums she was having while we were camping...they're GONE! She does have the occasional toddler meltdown, which is completely normal and manageable. I am going to blame the summer heat and her sniffling, summer cold that she had at the time. I will try, but I don't think I will ever forget that tantrum in the camping trailer that day. About an hour of screaming and kicking, all over a fingernail trim, and then another that day about a poopy diaper change! I was pretty certain at the time that both of our heads were going to explode. That, too, passed.

I am hoping to never encounter the wrath of Lucy like that again with the ~~head spinning~~, kicking and screaming, but I won't hold my breath.

For now, I'll just take it all in and enjoy being her "Honey" while it lasts!

The Nurturer

2010-07-19T15:26:00.000-07:00

My own little nursling likes to pretend she is nursing her own babies.

"Mommy, I'm giving my 'murf his milk." -Lucy

NeverEnding...

2010-07-19T00:45:00.000-07:00

...SUMMER!
I never want it to end, and I don't think Lucy does either, especially when we get to cool off like this! It's been in the ONE HUNDRED degree range for days on end here in our region of California.
Here is one of the ways that we chill out...

Flash Me! Friday: Artwork Edition

2010-07-16T00:39:00.000-07:00

This Flash Me! Friday idea is the brain child of Jen over at The Groettum Family blog. It is a chance to take a peek into how other people live their lives without having to personally ask them, and without having to seem too nosy!

This week, Jen picked the ARTWORK on our walls!

The artwork in our house is always changing. Lucy loves to paint, draw and create new things. We have a specific hallway in the living room/dining area where all her art is on display.

Here is this week's artwork...

There is also a very special plaque in my hallway upstairs. I see it everyday when I wake up and everyday before I go to sleep...

Lucy Plays Tether Ball

2010-07-15T11:40:00.000-07:00

Wordless Wednesday: Bed Sharing

2010-07-14T11:52:00.000-07:00

An exhausted Mommy and a peaceful Lucy sleeping together at about a month after Lucy's debut Earthside (about one week after we took her home from the NICU).
After two and a half years, we are still cuddling together every night!

Court

2010-07-13T16:00:00.000-07:00

Today, I went to court to get a child support order against Lucy's father.

I won't say too much about this here, but I will say that I filed for child support about a year ago, and only now is the case being solidified. Lucy's father has been disputing the monthly amount (among other things), as defined by the State of California based on both of our incomes and the amount of time spent with her. He claims that he should not have to pay said amount because he is "unemployed." And by "unemployed" what I mean is: working under the table so he doesn't have to pay anything, taxes or child support.

We went into court today, but never saw a judge (which was a good thing because the case was expedited quite quickly). We individually talked to the Child Support Department mediator who is neutral in the case, and is there to facilitate any paperwork and answer each party's questions.

The court order is now in full effect. They t's are crossed and the i's are dotted. They did rule in Lucy's favor. She should be receiving the back pay from the last year with interest, and the determined monthly support from her father.

This was not my idea of fun, and I'm glad it's over for now.

Two And a Half

2010-07-13T13:15:00.000-07:00

Happy Half Birthday to my sweet Lucy!

30 months old now.

Why must time go by so fast?!
I am not ready for her to grow up quite yet, but I do love every milestone we hit.

She is growing up so fast...

Playing dress up,
Asking to drive my car,
Wearing cotton "big girl" underwear,
Trying so hard to swim on her own,
Training pants and potty accidents,
Reasoning with me when she's in trouble,
Saying "I love you, Mommy" when I tell her I'm mad at her (my heart melts),
Applying my Carmex chap-stick all by herself, and then saying that she's going off to get married,
Helping out in the kitchen to make her own food,
Brushing her teeth on her own when just 6 months ago it was a power struggle,
Knowing what she wants and when she wants it...and being able to tell me,
Being so independent when she plays: reading, singing and imagining all by herself for hours,
Pushing my buttons and testing my patience daily,
Jumping,
Running,
Climbing,
Scrubbing between her own toes when she bathes,
Singing The Beatles song "Lucy in the Sky with Diamonds" at the top of her lungs in the back seat of the car,
Tantrums and power struggles that last for an hour,
Stubborn, hard-headed, and strong-willed,
Tending to her garden...and wanting to without prompting,
Recognizing where things are in town, like our house, daddy's house or whether we are going out of town for a doctor's appointment or visiting Grandma and Grandpa,
Singing songs to strangers in the supermarket or around the campfire,
Telling me my hair looks nice or how pretty I look,
Attempting to dress herself in the morning,
Reminding ME that she needs to do breathing treatments,
Loving her breathing treatment time because she LOVES to watch movies and Caillou,
Being able to remind me where exactly I misplaced my keys,
Making her own obstacle courses after watching Wipeout with me!

Today is also our 30 month breastfeeding anniversary with no weaning in sight...keeping her happy, well-rounded and healthy!
A very big milestone for both of us today!

I LOVE LUCY!

The Camping Trip

2010-07-12T19:23:00.000-07:00

What a fabulous time we had while we were camping this weekend!
Four very warm days spent camping along side of the beautiful South Fork of the American River in the foothills of the Sierra Nevada Mountains in California.

The days got pretty hot while we were there, reaching highs of 95 degrees Fahrenheit. The river water that directly flows down from the mountains from the melted snows of winter was so cold, at a brisk 58 degrees.
With the hot weather and cold water (that Lucy wouldn't step foot in for more than a few minutes) it was necessary to keep her hydrated while we played.
She loves to munch of ice in her down time, and I also added tons of salt to all of her food.

A lot of Lucy time was spent playing with this tether ball that was located right behind our trailer. She made up her own games, stacked rocks on the tire, and made up songs to sing while she swung the ball around the pole.
Hours were spent here...imagining!

Down by the river bank, she collected rocks to toss around.
The girl loves rocks.
Collecting rocks, throwing rocks, telling me about their shapes, sizes and comparing different colors.
In the two and a half years that I've known Lucy, and certainly after this trip,
I would go on to say that if she had to pick a future profession, it may be...
Geology!

Some very yummy calories were consumed while we were camping...one of my absolute favorite moments about camping and having an open fire pit...
S'Mores!
She gobbled up at least one marshmallow, chocolate, and graham cracker sandwich every night!

There were plenty of great ways to exercise Lucy's lungs while we were camping.
Her Grandma brought along some bubbles to play with...which Lucy is becoming a pro at!

The super luxurious part of this entire weekend was my Dad's camping trailer with complete electric hook-ups.
This means that we were able to do all of Lucy's breathing treatments, and had an air conditioned place to go if it got too hot outside!

I am going to end this lovely camping post with a side note about Lucy's attitude as of late. I will be elaborating more in another post about her terrible-two tantrums that almost put a damper on this trip! As if I didn't know already how stubborn and strong-willed she was already, but this trip proved that she really might be a fourteen year old girl trapped in a two year old's body!
We have been having some serious power struggles, and to say the least...
she has been testing my patience and pushing my buttons on purpose, just to get a rise out of me,
and some of these struggles have ended with both of us in tears!

Let's GO!

2010-07-06T14:48:00.001-07:00

We're going camping!!!!

We will be leaving on Thursday morning and heading up to Ponderosa in Lotus, California. It's less than an hour and a half drive from our home, and it will put us smack dab in the middle of Gold Country California right next to the South Fork of the American River.

Trees, hiking, fresh, cool air, silence, and a beautiful river all enjoyed with my girl...what more could I ask for?

We'll be going with my Dad and his wife Rhonda in their fifth wheel trailer for 3 nights. They will have full hook-ups at the campground (electricity and running water), which is just perfect since I will be lugging along Lucy's Vest and nebulizer for the breathing treatment sessions. It's certainly not down and dirty tent camping that I just LOVE, but until I can get a portable nebulizer, it's nice to have electrical outlets!

I will be taking lots of pictures of all of our adventures in Gold Country, and it is quite possible that we'll take a gold pan to hunt for gold!

If we strike it RICH by gold panning, don't expect to hear from us anytime soon! We'll be on a much longer vacation!

Fourth Of July

2010-07-04T00:52:00.001-07:00

Patriotic Piggies!

2010-07-01T20:16:00.000-07:00

Cousin Breanne came over today for lunch and gave Lucy a patriotic pedicure!
Lucy always sits in awe of the work being done to her little piglets.
Every once in a while she has to be reminded not to wiggle, but she sits for her colors!

Then Lucy took a stab at it on Breanne's fingers!
She did better than I thought she would of "staying in the lines" of her cousin's nails.

The patriotic piggies:
My mom, Lucy and I...

Notice the scab on Lucy's toe...
She had a little accident poolside because she's a JUMPER!
Crazy little dare devil!
Lucy loves to jump off the side wall of the pool, but she likes to jump on the count of two not three!
Consequently, she skinned her toes on the way in.

100 Hours Of Vesting

2010-07-01T17:18:00.000-07:00

Lucy has officially logged in 100 hours on her vest since we received it mid-October of last year! She wears it everyday for at least a half an hour when she is doing well and her lungs are clear. We up the treatment time if she is fighting lung infection or wheezing or coughing from allergies.

I can't even imagine how many hours she has logged on her nebulizer/mask, but that machine doesn't keep track of usage! If I were to take a wild guess, it would be in the 400 hour range! That makes for a whole lot of Barney, Caillou and Elmo movies!

54% BMI

2010-07-01T01:09:00.000-07:00

Tuesday, Lucy had 2 doctor visits in Sacramento...

One was Lucy's Gastrointestinal 6 week follow-up appointment with Dr. Barad. Her tummy was looking good, but I already knew that. Since Lucy began taking Zenpep (the real stuff, not the generic, and then finally getting on the correct dosage) she has has less frequent poop, reducing from 8 times a day to 2-3 times a day, she is less gassy and bloated, and the complaints of stomach pain have nearly ceased!

At this visit, we found out that she had gained a pound in the last 6 weeks. She is now tipping the scales at 29 pounds and is roughly 37 inches, bringing her BMI to 54%. This is amazing news! 50% is average or median for her height and weight combined, and is compared to other children in her age group. 54% is completely proportionate! I am so happy with that number!

Since the GI clean-out and Zenpep, I have been able to decrease the amount of Miralax from a full cap everyday to a half cap everyday OR every other day. I make sure to pay close attention on the strain when she goes number two to make sure no rectal prolapses reoccur.

The second doctor visit was actually just a nurse's visit at the pulmonologist's office. I have to get Lucy throat culture done to be able to attend the CFRI conference at the end of July. If it were just me going to the conference, there is no risk of cross infection because I do not have CF. Lucy, however, will be on site, and she must be cultured for b. cepacia and MRSA before she can even enter the hotel lobby where the conference is being held. She will not be attending the sessions and groups with me, but even just being on the premises could be a risk to other CFers if she did have any of these germs in her lungs. She will be hanging out with my mom during the day while I'm filling my brain with more CF knowledge and meeting new people in the CF community. I just couldn't bear (and neither could she) going 72 hours without being together, so she is coming with me. As the conference quickly approaches, I become more and more excited! Now we just wait for the culture results for the green light....

Conner Jones

2010-06-29T00:40:00.000-07:00

I have been delaying this post for a few days now because every time I think about Conner Jones and his family, I cry. The news of Conner's death really rocked my world. Even though CF is in my life every single day, Conner's story really, truly puts into perspective how fragile life is, and how lovingly and delicately it should be treated. Conner lost his valiant fight against CF and Prune Belly Disease at the young age of seven. You can read about his story here, on Sarah's (his mom) blog.

I never knew Conner. I have never met Sarah or Brad Jones in person, although if I did I would probably hug them and never let go. Because of Sarah's raw emotion and brutal honesty on her blog, I feel like I have known them forever. My heart aches for them, for their loss. My words can't even describe the emotions that I have had in the last few days since Conner's passing, so I cannot even fathom what Sarah and Brad have to go through. I realized that not only do I hate cystic fibrosis with every inch of my being, but I realized that I'm pretty scared of it...mostly it's unpredictability.

CF is different for every person fighting it. No two stories are ever the same. It treats everyone differently, and yet the outcome is always the same. I hate it. It scares the shit out of me. My goal from the beginning, when Lucy was diagnosed two and a half years ago, has always been to stay positive because that is what Lucy will emulate. Monkey see, monkey do. And to stay honest with myself and with Lucy. Always...even if that means talking about death.

Talking with Lucy now about death is an obvious "no" at two years old, but I must prepare myself mentally to be able to be completely honest with her when the time comes. Huge strides are being made constantly in the CF research world to help not only prolong the life of CFers, but make it a better, healthier life for them. I find this extremely encouraging in that Lucy may live to see 60, but I don't think we will see a cure for CF in Lucy's lifetime. I may catch some flack from some people about that statement because it certainly is not thinking positively, and we fight so hard for research and a cure. You can click here to find out how I feel about being realistic.

While I feel I must be honest with Lucy about ALL aspects of CF and all that it entails, because I will never lie to her about it, I really want her to focus on the life she has and how great it can be and will be. I want Lucy to get everything she can out of life. Take it and run with it. I want her to know that her life is fragile, and that every day should be lived to the fullest.

The Jones family portrays love at it's finest and fullest. A parent's love for a child runs deeper than any other emotion. The willingness to fight to the death, the power to love someone so deeply; it cannot be stopped. I will never forget as long as I live, Conner Jones and his family. Conner is an inspiration to me. His fight, his spirit and his strength is heroic. Sarah and Brad's fight for their son's life, their spirit and their strength at a time of such deep loss and grief is heartening.

Breathe easy now, Connerman. I know I will never forget you.

The New Arrival

2010-06-25T12:24:00.000-07:00

The difference between the old infant vest wrap that she used to wear, the black vest she was currently wearing, and the new one we received in the mail today is like night and day!

Here are some of the differences that we noticed right away:

Lucy loved the pink color! It makes it a little more exciting to wear for a two year old, for now at least.
The material is soft and the Velcro is soft so it doesn't rub Lucy in all the wrong places. When the vest is shaking and vibrating, the material rubs against her skin and would cause irritation, especially in the last few minutes because it is set to increase in speed. Now, she is irritation-free. No neck or armpit rubbing!
On the old black vest, there used to be holes on the sides that would blow out excess air. It was cold and noisy! Not anymore!
The new pink vest is quieter! The old black vest used to make slapping noises when it really got going at high speeds, and was louder than the compressor. Now, all we hear is the compressor.
The new vest is machine washable making it easier to fight off all the bad germs that we so diligently fight. The inner air bladder comes out so easily, and the outer shell can be washed and color safe bleach can even be used for even more thorough disinfecting.

Oh, Lucy! She loves her new vest...

Make an on-line slideshow at www.OneTrueMedia.com

Overnight Delivery

2010-06-24T15:00:00.000-07:00

I called and ordered Lucy the new vest from Hill-Rom. This new and improved vest will help my peace of mind because it's now washable! The bladder insert is removable so I can machine wash the vest, and with Pseudomonas, Staph and other germs being a constant threat to Lucy's health, I would love to be able to wash the vest that she wears every single day.

Here is a link for you to see what the vest looks like. I can't wait for it to be delivered tomorrow! I'll post pictures as of Lucy putting it to use as soon as we get it. She's going to look great in pink!

This should be a great improvement on the one we have now... It's colorful in a bright pink color instead of black, it is machine washable unlike her old vest, the tubes that come off the side of the vest that hook up to the compressor are movable and adjustable (old tubes poke out of the sides directly under her armpits and it irritates her), AND the word on the CF street is that the new vest doesn't blow out excess air on the sides making it not so cold during morning treatments!

The Big 2-9

2010-06-23T22:50:00.000-07:00

Yesterday marked my 29th trip around the sun! I had a great time celebrating with friends and family in the past few days. One special treat was Lucy singing the "birthday song" for me yesterday morning. She is so sweet!

My mom and Lucy got me the best gift that we can all benefit from...and ice cream maker! I made my first batch of homemade strawberry ice cream. It was a hit and only took 40 minutes to make. It will be so easy to make high calorie frozen treats for Lucy this summer. I guess I should go out and buy some sugar cones.

On Monday night, a good friend and I went out and got our hair done at Deeda Salon in Sacramento. They had an all day fundraiser Cuts For a Cause, and all the proceeds from the day's cuts, waxes and blowouts went to the Cystic Fibrosis Foundation. The fundraiser was brought about because of one boy's story. Simon is the nephew of one of the hair stylists. My friend and I were able to get fabulous hair cuts and also supported my favorite charity.

Just today I picked the date for another Team Lucy fundraiser to benefit the Foundation. Friday, August 13th will be Team Lucy's Spaghetti Dinner and raffle at the VFW post 1985 in Woodland, California. I am planning some big things for this event. More details will be available as I get them narrowed down, but I am hoping for a DJ or karaoke to follow the dinner and raffle.

Team Lucy has almost reached their goal this year of $10,000 dollars for the CF Foundation. We currently have $6,633.82 raised for this year! We'll keep on fundraising until we get to our goal, and until we find a cure.

Sesame Street Live!

2010-06-18T22:52:00.000-07:00

Tonight,
we went to Sesame Street Live: 1-2-3 Imagine!
Lucy was so excited and patiently waiting for the show to begin.
She just couldn't wait for Elmo, Abby Cadaby and Big Bird to come out and play! She was loving the big stage, and asked if she could dance on it.

Completely in awe of everything around her, she stared at all the kids and all the souvenirs sparkling in the crowd before the show began.

She now has her very own over-priced Elmo spinning vortex of plastic lighting, and couldn't be happier about it!
"Look Mommy!"

Let the wild rumpus start!
She laughed, smiled, giggled, squealed, clapped, stomped her feet, wiggled, moved, shook her booty, and used her imagination the entire show.
Her eyes never left the stage, and the smile never left her face!

The ultimate Lucy favorite:
ELMO's World!
with Dorothy the Goldfish and Mr. Noodle.

Oh, we had a great time! Even my mom and I enjoyed ourselves...even if we were only there to see her reaction!
PRICELESS!

The Goings On Lately

2010-06-16T22:16:00.000-07:00

Lucy's insurance is back on track now. All the paper work was squared away, and I was able to get Lucy's medications filled today. She went two weeks without the enzyme Zenpep. Luckily, I had saved her "old" enzyme, Pancrecarb in the back of the cupboard from when we made the last switch months ago. I gave her Pancrecarb during the insurance debacle and they worked well enough...just to get by.

After our vacation in Monterey and Lucy two nights of fever there, she is now feeling well, and only has a slight cough when she runs around and exerts energy. She fought off that bug with NO antibiotics! I'm so proud of her! With her being healthy, we are ready to really begin our summer fun!

On Friday, my mom and I are taking Lucy to see Sesame Street Live: 1 2 3 Imagine! I can't wait to see her face light up when she sees Elmo and Abby Cadaby in person!

I will have some minor dramatics in July. I finally got a court date to finally get child support. I filed a case for child support nearly a year ago, and Lucy's dad and I will have it out in court since he still refuses to pay a dime.

More news in the financial department...This week I broke down, choked back my own pride, and applied for temporary government aid. Holding back tears, I filled out the paperwork and had a meeting with a social worker. Lucy and I qualify for food stamps (EBT card) and cash aid through CalWORKs, although the actual amount has yet to be determined. It takes roughly 30 days for the case to get fully approved. This is something I never in a million years thought I would have to do, but I have been assured that it is what is best for Lucy so she can get everything she needs at this time.

OH! And then...I went into traffic court the other day to make a payment on an old ticket, and the woman in the office informed me that there is another outstanding ticket from 2006 in the system! I said, "WHAT?! I was just in court for this ticket just a few months ago and nothing was ever mentioned about another ticket from 2006?! I don't even own that car anymore!" She proceeds to get me a copy of the ticket, which I can't even recall getting because back then...well, I was pretty drunk most of the time and don't remember much of it. She then says that it is $1,200+ for the fine! My mind was boggled as I picked yet another court date to sort out my very old traffic issues. UGH!

BUT there is good news! I was accepted for a scholarship to go to the CFRI conference in Redwood City at the end of July! I am so excited to not only meet the CF moms, dads and adult CFers, but also learn so much about CF that I don't know already. I can't wait to hear about new, upcoming CF drugs being approved by the FDA as we speak, new CF treatments, and cutting edge doctors willing to speak and educate! I can't wait to get into our support groups with other parents and discuss CF related topics and gush about how wonderful and resilient our children are! I will be bringing a couple of boxes of tissue for that weekend, that's for sure! Here is this year's schedule of all the things I will be doing there!

Also, I can't wait to go camping this year! It is so convenient that my dad and his wife bought a 5th wheel trailer last year. We are able to have all the dirty, hiking, cook-outs, s'mores, fishing experiences of camping, but still have the conveniences of being able to plug in a nebulizer and vest to do treatments multiple times a day. We plan on doing a really long trip probably mid-July!

My birthday is next week, on the 22nd. I will be turning 29 years young! I have nothing planned for that day, and will probably be working that night since I need the money. I do have some pretty cool plans for the night before, on Monday! A friend and I are going to DEEDA salon in Sacramento to get our hair cut and styles, and guess what?!?!?! Proceeds from the cuts and eye brow waxes that day will benefit the CF FOUNDATION! We plan on getting dinner and drinks after we get all pretty at the salon for my favorite charity!

I am hoping to get past all the negative things coming at me and really enjoy this summer! Lucy is at such a great age to really be able to enjoy getting down and dirty with me. Swimming, camping, hiking, fishing and fun adventures are coming our way! This is my favorite time of year and I can't wait to share it with Lucy!

Playing Catch-Up

2010-06-15T11:45:00.000-07:00

I'm still playing catch up from our vacation in Monterey. This was on our last day. We went to the beach before hitting the road; she was fever-free and happy! I love toe pictures...can't you tell?!

The Aquarium

2010-06-10T00:56:00.000-07:00

Short and sweet today... The Monterey Bay Aquarium on vacation last week. We all had the best time! Lots of amazing sea creatures and habitats to see. Lots to be learned about ocean conservation. Lots of jelly fish, sea horses that looked like kelp, sea otters, sea stars to touch and feel, and even penguins and flamingos! The whole place is breathtaking!

2010-06-08T15:48:00.001-07:00

The first full day of our Monterey vacation, after Lucy's fever broke the first night, we went to the Dennis The Menace park. The playground is amazing! Lucy was so excited to be there even though she had just had a fever only hours before. It seems as my girl just rolls with the CF punches and is still able to enjoy life...no matter what. Fever schmever!

The playground was action packed and loaded with so many fun things to do. I am keeping the park pictures to a minimum because we still have wonderful Aquarium pictures and beach pictures to go through! I'll spare you the intricate details.

There were five different play structures, each designed for differently for certain age groups. It didn't matter to Lucy. She hit them all!

Lots of tunnels to walk and crawl through. Cement ones that go under ground, metal welded tunnels painted cool colors, and the plastic ones that make Lucy's hair stand on end...

An amazing 50 foot extension bridge that shook when she walked across.

This is the end of our play visit. You can see in her eyes that she was not feeling well. My poor girl needed a nap.

After the park, we went over to the shoreline and walked the California coast...Lucy wrapped in the Moby wrap...in and out of napping and wave watching.

Bad Timing Fever

2010-06-08T11:48:00.000-07:00

We went to Monterey, California for vacation last week. Our goal was to relax, enjoy the sun and sand, and go to the Monterey Bay Aquarium. Our first day arriving at the hotel, Lucy was acting strangely. We checked in, had dinner, and went to the hotel complimentary Happy Hour in the lobby. Lucy's attention span was not as good as it usually is, and she would act out and be ornery for no reason. I passed it off as toddler behavior because we had sat in a car for hours...maybe she was just full of pent up energy.

Here she is at Happy Hour enjoying her orange juice mocktail and bar snacks...

That night, after Happy Hour, we went for a swim in the indoor heated pool, and then went up to the room to bed. She woke me up by tossing and turning in the bed at about 3 in the morning. She was on FIRE! Her whole body was burning up. I, of course, never thought to bring a thermometer on vacation because she rarely gets fevers. This was a very high one! She slept through the morning, tossing and turning the entire time. She woke up around 7 or 8 am, and I put her into a cool bath because she was still burning up and acting a little delirious. My mom went to the nearest store to get Tylenol. She was miserable and we were on vacation! I felt so bad.

After her bath and some medication to make her more comfortable, I nursed her back to sleep...until about 10 am when the fever broke. She woke up in a cold sweat, but seemed to feel a little better. We got ready for the day, and just decided to wing it. Take it easy, let her lead the way, and follow her cues.

We went to the park in Monterey, The Dennis The Menace Park, upon her request. We left as soon as she showed signs of being droopy and lethargic again. She is always really good at telling me when she has had enough. We went for a walk on the coastline with her cuddled in the Moby wrap, and had another high fever that night while she was sleeping.

NOW, we get to the extremely bad timing portion of her illness. If it wasn't bad enough that she was sick on her vacation...I got a phone call during our trip saying that her Medi-Cal was canceled.

LUCY CURRENTLY HAS NO INSURANCE. The social worker, who has been working on Lucy's case for over two years, never put our new address into the file. When Lucy was up for redetermination this year (in March), the packet of paperwork was sent to the wrong house. I never received it, and then didn't get a phone call until after it was already canceled. I just want to make note, for the record, that this is not the first time this social worker has "lost" our paperwork. Last year, I got a call from our pharmacy saying that Lucy's medication could not be filled because she was no longer covered by Partnership. Turns out, the social worker "lost" our paperwork in the pile of crap on her desk. Whoopsie.

I am doing the paperwork now, to get it all straightened out, but she told me it may take up to two weeks to get it approved! What?! Lucy has an appointment with GI next week...guess I'll be rescheduling that, AND FINDING A NEW SOCIAL WORKER!

There will be more posts to come with pictures from our trip. After Lucy's two nights of high fevers, she was feeling much better. We went to the Aquarium and the beach. The last two days of our time together was enjoyable!

How Does Your Garden Grow?

2010-05-31T16:56:00.000-07:00

Oh, how important it is for me to teach Lucy how to grow her own food. Doing such a thing in an apartment building is not the same as having a big plot of land to sow seeds and grow fruits and veggies. We don't have rows and rows of crop. We have pots and flower planters with our food growing in it! Lucy picked her first crop the other day. She is always so excited to go outside everyday to help me water them, but she was even more excited to be able to eat what she has been tending too for weeks, and what she has helped plant and grow!

So far this year we have tomatoes, strawberries, basil, chocolate mint, cilantro and chives.

Good lessons in agriculture, nature, nurture, and good, healthy eating! Yummy!

PS- I am getting ready to start making my own Kombucha tea! I will be starting to grow my own mother SCOBY when we get back from vacation. Apparently, there has been a huge run on the stuff in my town. It is all on sale in town and all sold out! More on the Kombucha subject later! I am already addicted to it, and need to make it myself!

Clean-Out: Day Two & Three

2010-05-31T16:40:00.000-07:00

Well, geez. I didn't even blog about it on time this weekend because it was so uneventful. What I thought was going to be a three day blow-out fest was so nonchalant and nearly poopless compared to what I was expecting.

Day two (Saturday), I gave her the prescribed two ounces of Magnesium Citrate AND her cap full of Miralax that she takes everyday. It got things moving a bit more than the Mag Cit by itself. She had a few loose movements, but nothing too crazy. More like sludge than poop. CLean the intestines right out!

Day three (Sunday), gave her just the Mag Cit without the Miralax, and she had a couple more movements that cleared everything all out. Now, today we are just dealing with the aftermath. A few loose ones to clear it out and then we're back on track.

Tomorrow, I will begin her on the reduced amount of Miralax (a half cap a day in juice) just to keep the rectal prolapse away...as daily maintenance. NO MORE STRAINING TO FOR NUMBER TWO! A very happy mommy and a very happy Lucy bum!

Clean-Out: Day One & The Fair

2010-05-28T23:14:00.000-07:00

I wasn't able to begin Lucy's clean-out yesterday. She had an afternoon playdate with her friend and by the time we got home, she still needed a nap and it was getting late. We have never used Magnesium Citrate before, so was kind of unknown how it was going to effect Lucy and just how quickly. I didn't want to give it to her in the evening and be up with a poopy kid all night long.

I gave her two ounces of the laxative this morning with a little apple juice. She downed it, but nothing has happened! As I write this blog, it has been over 12 hours since I gave it to her and she has pooped regular Lucy poop twice. There has been no signs of cleaning anything out! Seriously, not to be too graphic, but I was expecting huge blowouts! Maybe I am mistaken on how this laxative clean-out is supposed to work, but it doesn't seem like it is working. I am going to continue the routine tomorrow of two ounces of Mag Cit AND give her the regular cap full of Miralax that she takes everyday.

Since there was no bowel issues today due to the laxatives, we decided to take an evening trip to the Sacramento County Fair. We spent five hours exploring the grounds, letting Lucy lead the way.

She found a science corner with fun crazy mirrors, games and activities. We played with magnets, pulleys, levers, air pressure and gears. She was being silly, and danced in front of these mirrors for a long time!

We went into a petting zoo. Lucy was in 'hog' heaven! She absolutely adores animals, and we had a hard time getting her to leave the pen. Pygmy goats, sheep, pigs, deer, donkey, chickens, wallaby, and llama were there, and oh so friendly!

Luckily this sign was just a joke. Lucy needs all the calories she can get! She had a Fair dinner, some of her Vava's funnel cake, and a ~~few~~ whole bunch of licks off of my dipped cone!

Still no clean-out progress, but who cares when we had such an enjoyable evening at the fair! There is always time tomorrow for more laxatives!

Flash Me! Friday: The Fridge Edition

2010-05-28T11:42:00.003-07:00

One way to tell if there is a CFer living in the house...just look in the fridge! Semi-unassuming on the outside with Lucy's alphabet magnets, clinic paperwork, and an I Love Lucy magnet.

Open up the fridge, and it still looks normal, with the door of condiments, Greek yogurt and left overs.

Take a closer look and you will find some items that are not in your average refrigerator...
Magnesium Citrate laxative and Pedialyte
right next to the grapes and chicken broth.

Half & Half is always used in our house with everything! When Lucy drinks whole cow milk...this high calorie stuff is added to it!

And then there is the CF inhaled medication located right next to the left over BBQ pork from last night. Someday, Lucy will have her own CF fridge mini fridge.

What does your fridge look like?

Clean-Out

2010-05-27T08:28:00.000-07:00

Poop, poop, and more poop.

I got the call yesterday from Lucy's GI doc. The abdominal x-ray she had almost two weeks ago showed that she was constipated and had lots of 'nasty' in her intestines. It needs to be cleaned out so she won't push so hard to get it out...that is what causes all the rectal proplases.

I went and bought a small ten ounce bottle of Magnesium Citrate for her to start taking today. She will be drinking only two ounces a day for three days. It can be frozen in to a slushee, mixed in apple juice, or Lucy can just down it by itself. She is amazing when it comes to taking medicine and ingesting weird flavors. The bottle actually says it is a 'sparkling laxative' that is lemon flavor, so I am guessing it is slightly bubbly.

Magnesium Citrate works in a similar way that her daily Miralax works. It is not a laxative that causes any cramping to get a body to 'go,' but instead, it pulls water from the body through the walls of the intestines making the bowels extremely loose. I will be giving Lucy a lot of Pedialyte, water and salt in the next three days just to make sure she doesn't get dehydrated.

After the three day cleanse, we will be lowering her dose of Miralax everyday and using it as needed. I will be watching very closely, as if I don't already, to see just how much Miralax she will need everyday. I will probably start her off at a half cap and go from there...more or less depending on the consistency.

It's a shame that Lucy is not fully potty trained yet. We're getting there! There are a lot of dirty diapers in my very near three day future. We will be staying home for the most part for the next three days because I don't want to clean up any big messes in public.

ANOTHER Pet!?

2010-05-26T21:51:00.000-07:00

Lucy was sitting in the sunshine of the back door reading a book. I was, of course, on the laptop doing some sort of bloggy facebooky thing. Lucy started talking louder than she usually does when she is merely reading aloud...

"I want to touch the froggy. Can I touch it, mommy? Look, itsa frog. Look at the froggy. Can I go ou'side and hold him?"

And, thinking that my toddler was out of her mind, imagining something that she had read in her book, I said, "What!? There is no frog in the backyard! What are you talking about? Let me see." I set the technology down, and casually got off the couch to see what the heck Lucy was talking about. When I looked, Lucy had her nose pressed against the glass of the sliding door.

She wasn't imagining the creature in the backyard, as I assumed. You know what they say about assuming! It wasn't an amphibian, but a cold-blooded reptile sunning himself on our patio!

Happy Bloggy Birthday!

2010-05-26T08:00:00.000-07:00

A DAY IN THE LIFE OF A CF MOM is 1 year old today!

This same day last year was my very first blog post ever. I had never blogged before, but then again, I had nothing of substance in my life to blog about. Lucy and Cystic Fibrosis has changed everything about me and they way I perceive the world, IN A GOOD WAY. It is bitter sweet for me to think that it took a little human being and a fatal disease for me to get my shit together! Just three years ago, I was a chain-smoking drunk who lived most of her life in a bar. Now, I am a mommy to Lucy and a student, and I couldn't be happier about it. Of course, there are still times when all I want is a pint of Guinness or a dirty Grey Goose martini with three olives, but I certainly don't want to go out every single night. I'd rather be home cuddling with my daughter. Every single moment is special when I am with her. Yes, even the out of control moments when I want to pull my hair out. I wouldn't give it up for the world.

As I reread the first blog I ever wrote, I can tell that my writing has changed, and my experiences have grown. I will continue to blog about mine and Lucy's daily lives and living happily and healthily as we can with Cystic Fibrosis, but things may change along the way as I learn new things about the world and about myself. There are still some subjects in my life that I choose not to blog about, and maybe some day I will be fully and openly honest with you, but for now, I'm still too scared to open up my life completely. My life and my blog is always a work in progress, and I am glad you all have decided to come along for the journey.

This blog has led me into the open arms of the CF community. There are thousands of wonderful people fighting for their lives or the lives of their children. They help keep me sane by just allowing me to vent, ask important CF questions, and talk about things that most people know nothing about...raising a happy child who happens to have a life-threatening disease. This blog has become therapy for me. I get to talk openly about the one thing that scares the hell out of me. I have met dozens of wonderful people, and am able to keep people, friends and family, in touch with what goes on with Lucy, and her health and happiness.

Thanks for following us through our life adventure and lending a helping hand along the way! I'll keep writing for years to come, if you keep reading! :)

"Not My Child!" Monday

2010-05-24T23:02:00.000-07:00

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

This never ever came out of the mouth of a 28 month old daughter this weekend. There is no way it was Lucy who threw adolescent attitude at her mother. She is only a toddler!

Let me set the scene for you...

It took place upstairs in Lucy's bedroom. Mommy had just finished bathing Lucy. Lucy was lying on the bed, while Mommy picked out something for her to wear that day. Just for fun, Mommy started dancing and being silly. She was singing Telephone by Lady Gaga, as it had been in her head all morning. Mommy pulled out all the old school dance moves out of her bag: the Running Man, the Cabbage Patch, and the Sprinkler. Mommy was busting a move, putting on quite a show for Lucy.

Lucy, lying on her back, turns her head real slow to look at Mommy. With one eyebrow raised, and what looked like her very first eyeroll, Lucy says to Mommy in a really slow, annoyed tone...

"You're really, really buggin' me."

Mommy, her dignity flying out the window and eyes misty, left the room immediately, so not to show Lucy how upset she was by her daughter's annoyed tone. Mommy never expected this kind of attitude to come from Lucy for another 10 years, at least. Mommy thought she would be 'cool' in the eyes of her daughter for while longer, but that has proven not to be the case. Lucy is growing up so fast, and is a very independent thinker. It scares the crap out of Mommy just thinking of what the teenage years have in store for her.

Lucy's First Pets!

2010-05-24T00:18:00.001-07:00

It truly pays to be a Facebook addict! A friend of mine on Facebook posted that she needed to get rid of a 10 gallon fish tank within the hour! I immediately called her, and since I was at work, my mom was able to be home for the delivery.

I picked up Lucy after work, and we raced home to see the new fresh water tank full of ten fish. She was so excited to see the fish and wondered if she could keep them all. With her nose pressed against the tank's glass, this is how it went:

Mommy: What do you think of the new fish? Would you like to keep them in your house?

Lucy: Look at the fish! There's a Nemo and a Dori and a Nemo and a Dori!

Mommy: Would you like to keep them and give them all special names?

Lucy: YES! I can keep them? Can I touch them and hold them?

Mommy: No, honey. They have to stay in the water or they will drown.

Lucy: I can't hold them?

Mommy: Nope. But you can look at them, feed them, and talk to them.

Lucy: Okay!

At 28 months old, my little girl has her very first pet...well, 10 of them to be exact! Tomorrow, we will be cleaning the tank, getting it organized, and finding a permanent place for it in Lucy's bedroom! She really couldn't be happier about it. All night she has been wandering over to the tank just to say "hello" to them, and she has even introduced all of her toys to the new members of the family.

The biggest fish "tank" I have ever owned was a small fish bowl with a dark blue and red Beta that, shortly after I bought him, took a trip down the toilet, and was replaced with a gold fish that I had won throwing ping pong balls at the county fair. This is going to be a fun project and quite an adventure for both of us!

Flash Me! Friday: Bathroom Edition

2010-05-22T00:17:00.000-07:00

This Flash Me! Friday idea is the brain child of Jen over at The Groettum Family blog. It is a chance to take a peek into how other people live their lives without having to personally ask them, and without having to seem too nosy!

For this weeks entry, Jen pulled randomly out of a hat, THE BATHROOM! I was horrified and assumed she might just pick something easier for our second week, and less messy like the dining room or computer desk.

Oh, the humanity! We have to photograph our bathrooms?! The only room in the house with toothpaste on the mirror? The room that has a three foot pile of dirty laundry in the corner? The room in our house that has not only hair product on the counter, but actual hair? Well, here it goes...

Mine and Lucy's bathroom. Yes, taken from afar so as not to show all the nasty details!

And Lucy's collection of toothbrushes.

That's all you get on this one. I'm not brave enough to show actual close-ups of the porcelain throne or the minor soap scum build-up in the shower. You can assume that Lucy's bath toys are always put away and the toilet brush is employed often.

NaCl

2010-05-20T15:57:00.000-07:00

Salt is a combination of the minerals sodium and chloride. These minerals are "essential" nutrients for the human body, which means that because we do not make these minerals in our body, they must be supplied by our diet.

Salt, in any human body, helps to maintain the body's fluid balance by keeping the right amount of water in the right places (think mucus membranes and organs). Salt also helps our muscles to contract. Not having enough salt in the body can disturb growth, reduce appetite, and cause stomach pain, weakness, nausea, and headache. Salt is necessary in helping regulate the body's moisture.

The Cystic Fibrosis genetic mutation creates a basic defect that causes the sodium chloride in the CFer's body to not move freely and correctly throughout the cells in the body. People who have Cystic Fibrosis lose extra salt in their sweat, making it terribly important to take in the extra from their diet.

No one is really sure just how much extra salt a person with CF must take in, but the recommendation is to take in salty foods in the diet and use that salt shaker on the table freely. Some adults with CF also take salt tablets as a dietary supplement. It helps aid in the loosening of the mucus membranes in the body.

Salt is good for a CFer. It is very rare that a person with CF will have high blood pressure due to too much salt. It is very rare that a CFer will ever get too much salt, in fact, because salt is lost heavily through their sweat, they are at risk for too little salt. Especially in humid and hot weather, or if they spend a lot of time outside or exercising, it is necessary to take in more salt.

When Lucy was a baby and still exclusively breastfeeding, I still had to supplement her milky diet with salt. I would either pump my milk and give her an ounce or two in a bottle with salt sprinkled in it OR I would just sprinkle salt directly on my nipple before she nursed! She had no issues with that extremely direct way. Lucy has always craved salt, and now she loves to eat extra salty foods. Today, before we went on a trip to the park, I had stopped off at the store to pick up a few sandwiches for us. I was walking passed the drink aisle, and thought to myself, "Hey, let's see if she likes Gatorade." She has never had Gatorade before, and my salt-loving girl sucked it down like it was the last bottle on earth.

Here is a really cool list that our CF team gave me last week to help me judge just how much salt Lucy is getting in her diet:

FOOD ....Sodium in milligrams

Ramen, cup noodles (1 package) ....1430
Salt (1/4 teaspoon) ....580
Dill pickle (1 medium) ....570
Canned soup (1 cup) ....480
Hard pretzels (1 ounce) ....385
Pedialyte (1cup) ....245
Cheerios (1 cup) ....204
Gatorade Endurance (1 cup) ....200
Bacon (1 slice) ....185
Potato chips (1 ounce) ....180
Canned carrots (1/2 cup) ....177
Gatorade (1 cup) ...110
Whole milk (1 cup) ....98

No More Homework!

2010-05-19T10:27:00.000-07:00

I made it! I did it, and I actually passed with good grades! My first semester back to school in seven years, and I managed to pass with flying colors. At seven o'clock this evening after my Math final is turned in, I will be able to take a deep breath and relax. No more homework, no more studying, no more logarithms, no more 8 page essays, no more quadratic equations to solve. No more trying to entertain Lucy while I rush to get my homework done! The semester is over and summer is just around the corner!

We have some really fun things planned already! In less than two weeks, we will be headed South to Monterey, California for five days to go to the Monterey Bay Aquarium and to have tons of relaxation time on the beach! I can't wait to make a huge sand castle with Lucy, or maybe have her bury me in the sand!

I just can't wait to relax and hang out with Lucy without having to worry about homework being due! Yippee!

Last Of The Tobi?

2010-05-18T11:09:00.001-07:00

Yesterday, we began the last month of our prescribed 6 month treatment of the inhaled antibiotic Tobi. It has been five months since Lucy first cultured mucoid Pseudomonas Aeruginosa and has not cultured it since then! The results from the culture that was done on Thursday, May 13th at clinic should be in some time at the end of the week, and hopefully there will be no sign of PA!

If there is no sign of PA on her culture, in 27 days we will be done with treatment, for now.

If she does culture PA again, we will probably have to continue with another 6 months of Tobi treatment, until it is gone!

Once a CFer has PA, there is always a battle with it, coming and going in their lungs. Lucy also has colonized Staphylococcus Aureus. It has permanently made a home in her lungs, but we only treat it if it starts showing symptoms.

I will be more than happy to wash my hands of Tobi when this 28 day run is over. I have this love-hate relationship with it, for sure. It adds an extra hour to our nebulizer time everyday, but the benefits of using it is tremendous. It keeps Lucy lungs healthy and that is all I could ever ask for. Lucy actually loves to wear her mask and asks for it even when it is not time for a treatment! She loves the extra hour of her PBS programming that she gets to watch when she has her mask and vest on. Her favorites are Caillou and Dragon Tales... and thank goodness for On Demand TV that allows me to play those shows 24 hours a day for free!

"Not Me!" Monday

2010-05-17T12:17:00.000-07:00

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week. Here's my story...

Okay...so much for the sunny California that everyone raves about. This spring is unusually long and rainy, which is good for the summer months here by helping fight off drought, but it is seriously putting a damper on mine and Lucy's excursion time. This same day last year it was 102 degrees and I was worrying about Lucy's salt intake and hydration, but today is 60 degrees and raining! What gives?!

Just two days ago, on Saturday, it was bright and sunny here at home. It was certainly not my amazing idea to load up the car and head out on a two hour drive to go to the beach that day. It was not me who promised Lucy a full day of sand castle making and splashing in the Pacific, only to make her turn around and come home after 45 minutes of beach walking. Nope. Not me. I would never be so cruel as to promise something like that, something of that caliber of excitement, to a two year old only to then take it all away. It was Mother Nature who shattered all of her expectations for that day.

It was not me who was so shocked and disappointed that it was a mere 48 degrees, foggy and windy on the beach when we arrived there. It was not me who stubbornly wrapped Lucy in the Moby wrap, blanket around both of us, to take a walk on the sand, bravely walking into the blistering wind. There were only about two dozen other brave souls on the beach, half of them being seagulls waiting for a snack to wash up in the surf.

It was not us who took shelter in the back seat of the car just to have lunch. Another day in the life of a CF Mom...trying to make the best of some disappointing moments. As you can see it was not me who dressed us completely inappropriately for the weather. It was not I who had her swimsuit on underneath the short sleeved shirt! Mid-May is supposed to be warm here, I swear!

It was not me who really wanted to stop on the way out at this look-out point. It was a freezing, short walk, but still quite the sight to see. Water breaking on the rocks with fog rolling all around us, and surrounded by blooming bushes and plants. It was beautiful.

It will not be me who remains persistent and tries this same trip in a couple of weeks. Now that Lucy is getting older and her first reflex is not to shove sand in her mouth, we will be heading out to this beautiful beach very often this summer. It was me who assured Lucy that we would have plenty of time in the future to build sand castles that go sky high...as soon as it gets a little warmer!

Gastroenterologist

2010-05-14T15:40:00.000-07:00

Friday, I took Lucy for her very first visit to a GI (tummy) doctor. I have to say, before discussing Lucy's stomach health, that the health center in Sacramento where her new GI doctor is located, is one of the coolest buildings I have ever seen that is directly focused and geared towards children and their comfort. The entire building is a pediatric building for specialist such as neurology and internal medicines. The walls are painted sky high with murals of giant gardens with butterflies hanging from the ceilings that have 6 foot wind spans. The ginormous waiting room has tropical fish tanks with "Nemo" and "Dori" in them, and each department is identified by shapes. The GI department was easily located by the green, 3 foot wide, four-leaf clover on the wall. Lucy was highly entertained before we even got into the office!

We were greeted by a happy nurse who weighed Lucy and immediately gave her a sticker. She had Lucy wrapped around her finger after that! Dr. Barad came into our room shortly, and was young and very friendly. He happily engaged Lucy while still focusing on everything I was saying. Since it was our first visit, I had to give him a ~~quick~~ lengthy rundown on Lucy's stomach health history from the last two years. Of course, he could have just read her mile long chart on the computer, but why take the time to do that when you have a very detailed mother to give you a recap. I am a mother who can describe her daughter's poop better than any color photo or chart ever could. I know exactly how many rectal prolapses she has had in the last year, some that aren't even noted in the chart! I can tell you exactly when she changed enzymes, to which brand, strength and dose. This makes it so helpful when I walk into those first meetings with new doctors. I end up doing most of the talking...the way it should be in a doctor's office, if you ask me! Who knows Lucy better than me? No one.

Since we had just discovered on Thursday at clinic that Dr. Grumpy miscalculated her Zenpep enzyme dosing, I told Dr. Barad that I would like to give the Zenpep at least a week to start working properly before doing anything too drastic, like a clean out with magnesium citrate or GoLytely. I really do think that now that Lucy is on the correct dosage of enzyme, she will begin to absorb food better. Just in the last 48 hours, it has shown to be effective! She has pooped less, and it is less runny!

Dr. Barad sent us over to the x-ray lab to get a "picture" of her intestines to see if there are any visible blockages or any lingering poop that needs to come out. The abdominal x-ray should show whether or not she is backed up. With every rectal prolapse she has ever had (six in the last year), she has always had frequent, runny stools, but still pushes hard to get them out, which means there could be a need for a "clean out" (enema). We should find out (via phone call) next week if she needs to be prescribed a heavy duty laxative to do a clean out at home.

Dr. Barad also gave us a lab form to take next week to a diagnostic lab to get a pancreatic elastase test done on her poop. I have to go down on Monday and get a poop kit to collect a stool sample. A pancreatic elastase test will show the levels of pancreatic enzyme she makes on her own. The last time she had a elastase test done was at 2 weeks old so the levels may have changed and would effect how we dose her enzyme pills. Her natural enzyme levels at birth were extremely low, making her very deficient and in need of a very high dose of enzymes in pill form.

I can't wait until next week when we get all the results back so we can make the changes needed to make Lucy's tummy feel more at ease! Enough is enough already!

Next week: pancreatic elastase test, x-ray results, and the throat culture from clinic...

Flash Me! Friday: Home Edition

2010-05-14T15:02:00.001-07:00

This Flash Me! Friday idea is the brain child of Jen over at The Groettum Family blog. It is a chance to take a peek into how other people live their lives without having to personally ask them, and without having to seem too nosy! This is the first week of Flash Me! Friday, and Jen asked us to take a photo of our home, the hub, where everything happens, and then in the weeks to come, we may delve deeper into more "secret" things like what the bathroom looks like (I may skip that week) or where Lucy eats her high calorie meals. This should get interesting and a little telling of how relaxed and easy-going I am when it comes to tidying up!

Thanks, Jen, for the challenge, and I promise to keep it as honest as possible by never cleaning up before I take the picture. Shouldn't be too hard.

Here is where Lucy and I live with my mom. You would never tell by the tiny, modest exterior, but it is a spacious three bedroom, two bath, two level town house with a garage. Home, sweet home!

Clinic Day

2010-05-13T16:52:00.000-07:00

Today was a clinic day for Lucy. Every three months, we drive to Sacramento to visit our CF team that helps keep Lucy healthy. Finally, after 6 rectal prolapses, and months of discussing it but never acting upon it, the team referred Lucy to a pediatric GI (gastroenterologist) doctor, who specializes in intestinal issues relating to Cystic Fibrosis. They were adamant that we get in to see a GI doctor as soon as possible to get Lucy's tummy evaluated. I take Lucy in tomorrow morning at 9 am to see Dr. Ashis Barad, M.D. with the Sutter Medical Group, where we can hopefully get to the "bottom" of these butt issues!

So, on an other note, I am a little bit peeved, actually A LOT peeved with Dr. Grumpy. He miscalculated the enzyme dosing for the Zenpep!! Yeah, it's no wonder Lucy has not been absorbing anything in the last month, generic or not! He prescribed a dosing of 3 pills with meals and 2 pills with snacks, but what she really needs to be taking is 5 with meals and 3-4 with snacks! What a huge difference (a difference of 10,000 units of lipase). I was fuming today after Lucy's wonderful dietitian informed me of this, and immediately upped the dose that I give her. I am anticipating less poop and less frequent complaints of tummy aches, no thanks to Dr. Grumpy!

The best news that I received today at clinic was the what the scale read when Lucy stood on it! Lucy, despite the last month's dramatics with the generic enzymes and apparent miscalculated dosing, has gained two pounds AND one inch in the last 3 months. I couldn't believe it! I went in to today's clinic visit really expecting the worst when it came to weight gain/loss. Who knew that even with malabsorbed pooping up to 10 times a day, there is still a chance for weight gain! It was the best news, enough to almost counteract my anger towards Dr. Grumpy.

There was absolutely no issues with her breathing or lungs at this visit. She hasn't even had any signs of allergies or asthma like last year at this same time. No wheezing, no rattling, no sputum, and her oxygen saturation was at 97. The RN did a throat culture to be sent to the lab today, and the results should be in by next week. I am fairly confident that the Pseudomonas Aeruginosa that found shelter in Lucy's lungs has been "put to sleep" by the inhaled antibiotic Tobi, although she still has one more 'on cycle' of the stuff. Only time will tell.

Stay tuned for an update from Lucy's GI appointment tomorrow morning. There may be a "clean out" in her near future to help battle the constipation. You just gotta love all the CF poop talk! Thanks for reading about all the nasty details. :P

Action-Packed Weekend: Part 2

2010-05-11T02:37:00.000-07:00

Saturday was my Mother's Day outing with Lucy and my mom, since I normally have to work on Sunday afternoons and I didn't want to give up my shift. It was a great day. We started out by going to breakfast at Bella Bru in Sacramento. I ate Eggs Benedict in the sunshine on the patio. It was delightful.

Then we headed over to the vintage Tower Theater to watch the documentary, Babies. Oh, what a wonderful movie it is! It was breath taking footage of four different babies from around the globe, filmed from birth to one year. One living in Namibia, one baby in Japan, one baby in Mongolia, and the other in San Francisco. There is no narrative, only occasional speaking by the mothers with no subtitles. It's just a film about the lives and milestones of human babies in their first year of life, and despite the play groups and plastic toys, or the lack of such things, the four babies all thrive and hit milestones at the same time. In fact, I thought the baby girl from Namibia seemed the most content and happy with the world around her. Lucy seemed to like the movie and even commented on the African baby "getting mommy's milk."

Lucy was the only baby at the Babies movie! It was full of couples and mother-daughter duos enjoying their Mother's Day weekend together. The funniest moment that occurred this entire weekend was a brief moment in the theater. It was during a quieter part, a lull in the movie, and Lucy sat up in her chair really straight, and let one rip! This was a loud, stinky CF fart, in public, in closed quarters while it was very quiet! I was in hysterics laughing, and so where the folks seated near by. After Lucy passed the infamous CF fart, she exclaimed, "I FARTED!" It was definitely my own baby showing her true colors during the Babies movie!

Here is Lucy outside of Tower Theater playing by the water fountain...

After the movie was over, we headed to Davis to go to the 41th annual Whole Earth Festival. It is held on the UC Davis campus in the quad. Tons of homemade, earth-friendly crafts, and sustainable, earth-friendly food vendors along with music and activities for children. I had to cut our trip to the festival short because my allergies where raging that day! There was a slight breeze and the pollen count was so high that not even multiple rinses with my Neti pot could help. I just wanted to go home and clean all the pollen off of me.

Overall, it was an amazing weekend. Relaxing, hanging out with my two favorite girls: Lucy and my mom. I had a wonderful Mother's Day and hope that all the other hard-working mothers had a beautiful day as well!

Action-Packed Weekend: Part 1

2010-05-09T21:45:00.000-07:00

My wonderful action-packed Mother's Day weekend began on Friday. Lucy and I woke up, got ready and headed to Sacramento to Dr. Grumpy's office top pick up some name brand digestive enzyme samples of, Zenpep. I have been trying to get Dr. Grumpy's office to fill out paperwork to fax over to the insurance company to tell them that the generic version of Zenpep is NOT working for Lucy! In the beginning of the week, she began to have up to 10 bowel movements a day and even had another rectal prolapse. That makes number six this year in case you weren't counting.

After we got a new stash of the real stuff, we headed over to my dad's house to visit before they left for Las Vegas and the Grand Canyon for vacation. Lucy really loves to hang out with her Grandpa! She always looks forward to my dad handing over all his loose change to add to her piggy bank.

We got home Friday afternoon, and promptly left again to go to the Dixon May Fair, the oldest fair in California. We had so much fun rocking out listening to an adolescent cover band made up of 9 and 12 year old boys. It was so cute to see Lucy "moshing" around to a Black Sabbath cover.

We rode the carousel upon Lucy's request, but the rickety horse she was on needed some oiling. It was very jerky and made her a little uneasy. Here she is before the ride began...

The the request for a pony ride came at dusk. She was so excited the entire time, so excited that I am thinking of getting her some riding lessons. Her face lit up while she was on that pony. Every time that pony made a revolution with Lucy on it's back, Lucy would grin from ear to ear and yell, "I'm riding a ponieee!"

Let's also not forget the powdered sugar, chocolate and whipped cream covered funnel cake that we shared as we were leaving the fair! Oh, yummy... and a great way to end our Friday!

Great Strides

2010-05-02T17:18:00.000-07:00

What a great day at the Sacramento Great Strides walk yesterday! I was amazed at the turn out! Nearly 40 people, family and friends, walking for Lucy! I got all misty-eyed multiple times yesterday just from the LOVE pouring out of this team! Look at all of us decked out in our purple shirts with Lucy's sweet face on the front...

And TEAM LUCY on the back (and of course, everyone carried red balloons for Connor)...
I couldn't have asked for more perfect conditions to make for a better day! When people refer to "sunny California" this is the stuff they're talking about! It was a sunny, warm May day at the Sacramento state capital.

I was honored to meet other people in our CF community yesterday. Those wonderful, supportive people that I have been speaking to via the internet for over a year now. These people, other CF mommies and adult CFers, are so special to me in so many ways! They know exactly what I am going through everyday. I was able to finally meet my friend, Tony. He is an adult CF warrior who lives in the Sacramento area. We have been internet friends for almost 2 years, so it was nice to finally put a face to the name!
The outpouring of support and love from my friends and family is what keeps me going. Without these people in my life, I would certainly crumble under the pressure. They hold me up just by being around. They make me laugh, they make me cry, and they stand up with me to love and support the one thing that means the most to me... LUCY!

A huge THANK YOU to all those that donated to help find a cure for Lucy, and to those that walked with us yesterday. I love all of you! I am not even close to being done this year.
The fundraising will continue through the summer! Stay tuned!

The BIG day for TEAM LUCY!

2010-05-01T06:28:00.000-07:00

Today, we walk for a cure! I am up and at 'em early today to get all the RED balloons blown up for Team Lucy to carry during our walk. We are carrying them to cheer up Connor, a brave little 7 year old boy fighting CF in Washington State. You can check out his story here.

Stay tuned for pictures of our Great Strides walk, our TEAM LUCY and all of our RED balloons! Our purple Team Lucy shirts turned out great, and we are all excited to turn in our money and walk, walk, walk!

Only Sometimes...

2010-04-29T01:28:00.000-07:00

Only sometimes do I feel like I might have a total emotional break down. Only sometimes do I cry. This is one of those times. I feel overwhelmed today with life in general. Cystic Fibrosis wears me down, and then I stop to really think about how I am feeling. Only sometimes do I feel guilty. Guilty for feeling helpless to cure my child of this fatal disease. Guilty for feeling like I am the one backed into a corner with no where to go. Why should I feel worn down when it is not me who carriers this disease everyday; the one who feels the physical effects of this disease every single day?

How is Lucy feeling when she has to be shaken by her vest day in and day out? How does Lucy feel when I constantly remind her to take her enzymes every single time she puts food in her mouth? How does Lucy feel when her rectum falls out of her body and have it pushed back in by her mommy? How does Lucy feel when she has horrible stomach aches and gas that clears a room? How does Lucy feel when she complains of a stomach ache and shits 10 times a day? How do I have any right to feel overwhelmed when it is Lucy who bears the real burden? Only sometimes do I feel selfish for having these feelings.

I wonder if she really knows any different. She just lives her life as she has always know it to be. For now, I bear the burden for her. I see other CF warriors fighting with all their strength and all the courage they can muster. I look up to them, but I also see Lucy's potential future. It is a huge weight on my heart. I want Lucy to grow up thinking she can do anything, fight CF with everything she has every single day, but how do I teach her these things, guide her in the right direction, when there are days when even I don't want to fight? How very selfish of me. Of course, I would never give up fighting for my daughter, but I will tell you, there are days when I wish CF would take a long walk off a short pier. Give Lucy and I a break. Only sometimes do I pity her, pity me. I do not want a fucking pity party. This post is certainly not for sympathy. I am venting. I am human and can only be happy so many days of the year. Today is my day to be pissed off, overwhelmed and fed up. I am a tired mom. My heart is tired, my hands are tired, and my head may explode today.

This semester is almost over. School ends in nearly 3 weeks. There will soon be no homework to consume the better part of my day, so that I may spend all of it with Lucy. I do not feel guilty about that. Summer will be good. Relaxing. I got mad at Lucy today. I feel guilty for shouting at her. She was only begging for the attention I was spending on an English paper. I can't wait until this semester is over. I apologized to her, but I still feel awful. How will I ever make it to my own goal if I am already overwhelmed with what I have on my plate. At this very moment, I feel weak. A very weak mom. How will I ever survive nursing school when I get there?

My eyes are swollen and my pillow is calling my name. Tomorrow will be a better day. Only sometimes do I feel low. Only sometimes do I feel like complaining. Today is that day. I'll wake up tomorrow feeling so much better.

Team Lucy Car Wash

2010-04-24T22:36:00.000-07:00

Business was a little slow today at the Team Lucy Car Wash in Sacramento. We had beautiful 75 degree spring weather. We had a prime location on a corner zooming with heavy traffic. We had buckets, soap and plenty of towels. We had baked goods to sell, BBQ, and cold refreshments, but it seemed liked people had somewhere else to be.

We stood on the sidewalk waving our towels, hailing down cars to stop for a wash, but passers-by either honked or waved, but never pulled into our driveway. Our sign was amazing, but somehow not enough to grab the attention of the cell phone wielding drivers that drove by. About a half an hour into our washing, we actually witnessed a fender bender less than 100 yards away.

Lucy was so excited about her car wash. She stood on the grass, skin slathered in sunscreen, and yelled at the cars going by.

Our very first customer was a nice Sac State student who needed her bike cleaned. Badly. It looked as if it had been outside for the duration of the winter season. It was covered in cobwebs and crunchy leaves, but Lucy and I polished it up real nice!

I told my little helper that if we were going to find a cure for Cystic Fibrosis, it would take a little elbow grease to get it...

She was more than happy to help, and was able to reach places that were hard for an adult to get to.

One bicycle, three vehicles, and $137 later, we closed up shop and headed home. We had a lot of fun today, got some sun, and raised a few bucks for a cure. A extra special thank you to Jennifer, an old friend from high school, who came up with the idea and bought everything to fund the project. You made a big difference today and should be proud of yourself! Thank you!

The Billboard

2010-04-24T20:33:00.001-07:00

Here is the Great Strides billboard in Sacramento located on the Sacramento State campus along Highway 50. I am so proud to have this up for everyone to see as they drive their commute everyday. It can be seen from the East and the West, from both sides! It is on a loop, sharing space with other advertisements, running about every five minutes. This will be running throughout the week so thousands of people will see it! I really hope this will create more CF awareness in the Sacramento area!

A special thank you to Kendra at Clear Channel Outdoors for setting up this billboard for us, and thank you to my friend Christy for introducing us!

Great Things For Great Strides

2010-04-22T22:38:00.000-07:00

There are only 9 days left until the Cystic Fibrosis Foundation's Great Strides walk here in Sacramento, California. May 1st is the big day.

Team Lucy is coming together quite nicely. We have a confirmed total of 36 people, friends and family, that are walking with Lucy that morning to support our fight against CF. It is such a great thing that so many people are going out of their way to help us out, raising funds for a cure and showing up to walk for Lucy.

A friend of a friend works for a company that does digital media advertising in the Sacramento area. She has so kindly offered her services and free digital billboard space to help us spread awareness about Cystic Fibrosis and the Great Strides walk on May 1st. I have just looked at the rough creative plan before she adds it to the billboard. It is truly a great thing for our campaign! The location of this Great Strides billboard is in such a place that thousands of people will drive by it everyday on their commute. In Sacramento, along Highway 50 (the same highway that stretches over 3,000 miles from California to Maryland) near Sacramento State University, is where the billboard will be. I'll keep you all posted with pictures and the exact location. It should be finalized by tomorrow.

With the Team Lucy bake sale (that raised a total of $800 for CFF) behind us, we now have another upcoming fundraiser on Saturday. In Sacramento, on the corner of Freeport and Sutterville, Team Lucy members will be having a car wash, BBQ and bake sale to benefit the Foundation. Come by, grab some food, and relax while we pimp your ride. I am excited to see how much this great thing will raise for the foundation.

Team Lucy has raised an estimated $3,000 so far this year, and we won't be stopping as soon as we walk on May 1st. No way. We will continue to raise funds through the summer, adding more tomorrows everyday for the 30,000 CFers fighting this disease in the U.S. There are more great things in the works for Team Lucy and the Foundation. The next event that I am planning is still top secret, but I can guarantee you that it will be a homerun in the fundraising department!

Stay tuned...

Kissing Cousins

2010-04-17T23:48:00.000-07:00

What another great day we had up in the hills with my brother and his family. Lucy adores her new cousin, who is only four weeks old, and dotes on him constantly. She wants to hold him. She wants to kiss him. She wants to touch him and feel how soft he is. He has that new baby smell that we all just love.

I really could have never imagined how much she would love something so new to her. A baby. A cousin. There was an instant bond between them. She is amazingly gentle and nurturing, always wondering when Dylan will get his mommy milk, and asking if he is sleeping.

It is truly breath-taking to watch my two year old run around the house reeking havoc on the dogs, couches and the piano, and then suddenly I see her stop everything she is doing. Her face softens, she smiles, and she plants the sweetest, softest kiss on his forehead , and then moves to the next crazy toddler task.

So sweet to see my baby be so gentle and conscience of another being that is so much smaller than she is.

Seven-Fifty

2010-04-17T00:49:00.000-07:00

So I realize that I have flaked a little on my blogging in the last few days, and I apologize. I have been planning a fundraiser this week for CFF, and it certainly kept me on my toes. I baked and baked and baked for almost 20 hours. I baked for CF. I baked for cure.

I am amazed by the love I felt today. After the bake sale, letting it all sink in, and letting myself relax with a glass of wine, it hit me. People really do care. People I have only just met, complete strangers, family and old friends, came out of the woodwork to buy baked goodies in honor of Lucy, to cure Lucy. I let it sink in and now I cry. I am exhausted and my kitchen is a utter disaster. I was not expecting the outcome that we had today!

I set up shop in the county government building where my mother works, strategically picking a date that fell on payday. Wink, wink. I posted an invite all over Facebook. I told everyone I knew locally to come down from 2 pm to 5 pm to buy some brownies for a great foundation, for Team Lucy. They could, without a doubt, help Lucy by purchasing a 7-layer magic bar. Oh, yes. All the proceeds of today's bake sale will go to CFF for research and a cure for Lucy!

I couldn't believe it. We got home, and my mom sat down and counted the donations in the box. When she told me the number, my knees got weak. For a little three hour bake sale, I was expecting to maybe raise around two hundred dollars, so when my mom told me that we raised $750 in funds, I felt warm and fuzzy inside. Was it warm and fuzzy from eating mass amounts of cookies and rice crispy treats all day? Nope. It was from the feeling I had inside knowing that my local community helped out my little girl.

I will fight to the death to find a cure for CF. I am not a research scientist, and I am not a doctor. Just a mommy who wants to see her baby grow up healthy and grow old. I wish I could just snap my finger and CF would be cured, but we all know that would be preposterous, so instead, I bake.

A special thank you to all the little baking elves (you know who you are) who helped bake some of the goodies for today's event, and to all the donors who came out to get a cookie or two! Because of you, we are 750 steps closer to finding a cure for Lucy. Thank you!

It really does take a village!

Generic Worries..

2010-04-12T02:15:00.000-07:00

I am a little peeved with someone, but don't know where to pin the blame yet.

After using all of Lucy's samples of the new enzyme Zenpep that we received from Dr. Grumpy a couple of weeks ago, I went into our pharmacy to fill the prescription. I was told multiple times by our CF clinic, pulmonologist and others in the CF community, that taking a generic medication is not as effective in treating a CFer. These generics are said to be made with different, cheaper ingredients, and have been proven to be less effective.

I was asked by the pharmacy tech, when I dropped off the script slip, if it was okay if they filled the Zenpep with a generic version of the medication. I immediately told her that it was not okay, and that we were instructed to not give Lucy any generic pancreatic enzymes. All was fine and well as I watched her make a note in the computer.

Two days went by before I went to pick up the order, as I was told that they would have to order the Zenpep and it would be a day or two. I was told that Lucy's insurance would not fill the prescription with the Zenpep, and would only fill with the generic version. The tech said that they would give me a call when the order was properly approved and filled, pending the completion of a form to be filled out by one of the parties in question: insurance, doctor, or Eurand pharmaceuticals that manufactures Zenpep.

The doctor was called, and instructed the pharmacy once more that a generic enzyme was not to be used. Eurand pharmaceutical company, that makes Zenpep, claims that they also make the generic brand of the enzyme! What a coincidence...they must own the patent on the formula.

The claim is that the two products (Zenpep and the generic) are made in the same factory, and that the same exact formula is used in both!

The insurance company won't pay for the Zenpep, and tells the doctor to fill out some FDA report about adverse side effects of using generics versus the name brand.

This is all reported to me by the small, family owned pharmacy, where we have gotten most of Lucy's scripts in the last two years.

The doctor apparently didn't oblige the insurance company by writing that repost because I walked away with the generic version of Zenpep. Mind you, they are in the same exact brown, glass bottle as Zenpep, and they are manufactured and distributed by the exact same company, and allegedly are made from the exact same ingredients.

WE ARE WORKING WITH GENERIC PANCREATIC ENZYMES HERE!

My question and worry for all of you in the blog-o-sphere:

How is it possible that ONE company can make the exact same product, put similar labels on the bottles, and then charge drastically different prices for both?

If these things do not work for Lucy in any way, you can bet your sweet enzyme I'll be taking these generic pills back and demanding the name brand.

The Kite

2010-04-11T10:27:00.001-07:00

The weather this week was pleasant. Very sunny with enough wind to think about flying a kite. Lucy and I got our butterfly kite together and went outside, ready to send it high into the sky. By the time we got the kite ready by putting the kite tails on and making sure the string was not tangled, we went outside and the wind was not as strong as it was in the morning.

There were very strong gusts of wind lasting no more than 30 seconds, and then the wind would just die off completely! Our kite went no higher than 10 feet, and then would take a nose dive into the grass. I thought our kite-flying day was a dud. BUT...

Just like having Cystic Fibrosis, Lucy thought this grounded kite was the norm. She knows no different. I was extremely frustrated that this kite would not take flight. I wanted it to work so I could show her how high in the sky it could go. I was getting upset about our kite being grounded, but then I saw Lucy really enjoying herself. Lucy was more than happy to chase the kite as I dragged it on the ground, trying to step on the tails. Seeing that it didn't matter to her that our kite was not flying, I kept on dragging! I ran and ran and ran and ran, dragging the kite along. It would skip and hop across the grass, and Lucy would chase it and giggle and squeal with glee the entire time.

Lucy could care less about whether her kite would get off the ground. As hard as I tried to get that kite off the ground, it didn't matter to Lucy. Seeing the world through the eyes of Lucy makes me see that I don't always need the best of conditions to have fun or thrive. We can have fun with the conditions we are working with, taking full advantage of the sunny days. Neither CF nor a flightless kite can keep us from having fun!

New Tricks

2010-04-06T16:53:00.000-07:00

Lucy comes up with new tricks to show me everyday! Whether she is trying to plummet down her slide head first, singing "Jingle Bells" in April, or shoving a DVD into the VHS slot, she always manages to make me laugh daily. The other day she asked me if she could go to sleep on the stair...

There are things she comes up with on her own with no help or influence from me. It amazes me how a child can comes up with these new found tricks on her own, but somehow she manages with great imagination. She comes up with new tricks like using no hands to hold her cup...

On another note... I couldn't believe my eyes when I went to my stat counter for this blog this morning! Tuesday's stats shows that I had 3,974 page loads and 1,955 new visitors to my blog in a 24 hour period! Thanks to my "Not Me" Monday that was created by MckMama and the link to her page, I received more traffic in one day than I ever get in two months! Thanks to MckMama, there is a little more CF awareness out there in the blogger world!

"Not Me!" Monday

2010-04-05T14:02:00.000-07:00

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

No way! It was certainly not me who let Lucy eat junk all day yesterday. Lucy received 3 Easter baskets from certain family members, who loaded them with various candies that a toddler is sure to want. Hollow bunnies, Cadbury eggs, malt balls, marshmallow eggs and peanut butter eggs! There is no way I would ever let my two year old eat crap all day, snacks of chocolate intertwined with fruit salad and deviled eggs because that just wouldn't be healthy. I know better than to think solely of the high calories she is ingesting from all of that chocolate, as opposed to the unhealthy consequences of all that sugar being processed in such a little body.

It was not me who didn't even really hang out with Lucy all day yesterday. I spent most of my time in the kitchen while she played with another two year old, Mike. We would stop every once in a while just to get kisses or change a diaper, but she was so independent and busy. It's not me who is so sentimental about my little girl growing up so fast, and the thought of her one day no longer needing me around to dote on her constantly.

It is not me who quickly writes a blog post when I know darn well how much homework I have! I post things less and less, but know that we are all alive and doing WELL! Lucy is still using the new pancreatic enzyme Zenpep, and we'll be checking her weight over and over to see if there will be a significant gain. I am half way through my first semester back at school in 7 years, and doing very well! I have A's in both classes: intermediate algebra and English 1a.

Here are a few photos I was able to snap of things Lucy did not do yEASTERday...

Dylan Danger

2010-03-26T12:47:00.000-07:00

On March 25th, 2010 at 4:27am, I became an Aunt for the very first time. My brother Brandon, and his spectacular girlfriend, Kodie, welcomed their first child, Dylan Danger, yesterday. This little boy wanted to join us on this earth three and a half weeks before the calculated due date, but he is happy and healthy and should be going home soon. He weighed six pounds and nine ounces at birth and was 20 inches long.

Here is Dylan Danger's first blog debut at only 4 hours old:

"Danger is my middle name!"

Lucy and Dylan Danger, met for the first time yesterday. She has been anticipating his arrival for months now, and frankly, I am glad he is finally here! She talks about him every single day, asking typical toddler questions in repetition...

Danger is in Kodie's tummy? What happen to Kodie's belly button? When will Danger be out of Kodie's tummy? Who will give him mommy's milk? Will I be giving him mommy's milk? Will Kodie be giving him mommy's milk? Can she hold him now? Is Danger a baby for her? Is Danger going to be her cousin? Will Danger be a girl like her?

So many questions for one little girl to ask about one little boy! She is so excited to be a big cousin and I know she will teach him all the ropes to living life in this world! The big cousin and Dylan Danger had there first meeting, and she showed all the tenderness and loving nature that I hoped she would. And I am so elated to finally begin my Auntie duties! They begin with lots of kisses!

A Quickie

2010-03-26T12:21:00.000-07:00

Just a quick update on Lucy and her new enzymes...

Lucy went to see Dr. Grumpy on Tuesday where he checked out her belly button and gave us a few sample bottles of a new pancreatic enzyme called Zenpep. It hasn't been on the market for very long; it came out to the public at the end of 2009.

These different brands and types of enzymes are so very similar but work differently in different people. It is like comparing Pepsi and Coke. They are both a Cola, but they have slightly different formulas that make them taste different, and everyone has one that they prefer over the other. This is the same for all the enzymes. They are all taken from a pig's pancreas and formulated to replace pancreatic enzymes in a human, but they are made slightly different and work differently with every person.

Lucy has been taking Zenpep for 3 days now. There has been a reduction in her stomach's bloating, but her poop has actually gotten worse. They are looser than before and all together, clear the room, FOUL! These are classic showings of not absorbing and digesting properly. I will only wait 2 more days, and give Zenpep the benefit of the doubt, before switching Lucy back to Pancrecarb, and asking Dr. Grumpy what he thinks the next step should be. (I can't wait until her real doctor, Dr. Perez, gets back from maternity leave! I miss her!)

Lucy's belly button is still protruding a little bit but it has not gotten any worse. I will continue to keep my motherly eye on it but not worry too much about it.

Piper's Gettin' New Lungs!!

2010-03-21T10:38:00.000-07:00

Piper, the fabulous CFer from New York who has been on the transplant list for a new set of lungs, just got the call this morning! She had inspired me to write this blog on positivity. You can read all about the early morning call she got this morning by clicking here.

EVERYONE should be signed up to be an organ donor. Someday Lucy may need a new set of airbags, so sign up and save a life. It is easy and fast.

Mothering Passed Down

2010-03-20T17:16:00.000-07:00

Yesterday, I was at my grandmother's house looking through picture albums and found a photo of my 23 year old mother breastfeeding newborn baby ME in 1981. Healthy nurturing habits must be passed down through the generations, one generation teaching sons and daughters how to peacefully parent their own children. It begins early on in infancy.

My mother, in 1981, was laying the groundwork and foundation to my own parenting styles today. I must say that I learned from the best, and I hope to pass down my own natural ways of parenting to the next generation. This photo is of 26 year old me breastfeeding Lucy while she was in the NICU. The acorn doesn't fall too far from the tree.

Protruding Belly Button

2010-03-20T00:29:00.000-07:00

A few days ago, I noticed that Lucy's belly button was sticking out, sort of protruding a little. It was sticking out enough for me to take notice since she normally has a cute little "innie" belly button. It really looks like she has an "outie" now, but still odd enough to be concerned about it, especially with all of her prior GI issues (five rectal prolapses in a year and meconium ileus at birth.)

The small lump is hard to the touch, but there is no pain involved in it. She never complains about it. I was thinking it may be a small hernia, and I made an appointment with her CF doctor to make sure it wasn't too serious. We will be seeing Dr. Grumpy on Tuesday, where we will also discuss changing her pancreatic enzymes once again! She is still having frequent poops that are loose and greasy, and she is still straining to go despite the full cap of Miralax everyday.

I really want Lucy to be referred to a GI specialist to really dig deeper into her bowel issues since they so frequently happen. They have been putting off the referral because we always seem to remedy the problem for a few months before the issues come back again. I think I will be asking and pushing a little harder this time to get to the bottom of things once and for all. Yes, the butt puns were intended!

CrackBerry Stolen!

2010-03-19T23:41:00.000-07:00

I was only on day two of my new technology-filled life with a brand new phone, a BlackBerry Curve 8310. I have never before owned a SmartPhone and was incredibly excited to be able to handle all of my networking needs on one portable location.

How terribly sad that it had
1. taken me this long to get a SmartPhone, and
2. I am so upset that someone stole it.

The whole thing is sad to me. I should know better and keep my "things" close to me, but I was in a hurry to go nowhere and wasn't paying attention.

I was on my way to a local Mexican restaurant for dinner with Lucy and my mom. I got out of the car, opened up Lucy's door to remove her from her car seat, set the shiny new phone on top of the car so I could lug her backpack and her out, and then I stopped to check Lucy's diaper before heading in to have dinner. I stupidly and mistakenly left my brand new, shiny, oh-so-special, handheld social lifeline on top of the car.

We went into the restaurant, sat down and hadn't yet ordered. It was maybe ten minutes before I realized what I had done, and I ran out to the parking lot to get the phone. It was gone, never to be seen again.

Of course, I had yet to buy insurance for the phone; there is a 30 day grace period before you have to decide to buy insurance. I reported it stolen and found out that I would not be eligible for another great upgrade deal until November of 2011! My $10 BlackBerry was gone forever and so were the great $10 deals... so I thought. I wanted to cry.

I filed a police report with the Woodland Police Department, but for some reason I think they may have more pressing matters to deal with than my stolen BlackBerry.

My mom was nice enough to let me use her mobile upgrade to get the same $10 deal on a BlackBerry. She likes her phone, and it is in good shape, and she promised me she wouldn't be needing a new one for a while. I am able to get another new phone for the same great deal within a couple of days.

The moral of this story:
Don't be in such a hurry to get somewhere, and don't leave your phone on the top of a car. Get insurance on everything of great monetary and social connecting value just in case! Hooray for mothers who let you use their wireless upgrade because you let your phone of it's leash.

Shame on me. I learned my lesson the hard way.

Positive AND Realistic

2010-03-16T13:44:00.000-07:00

I am a regular reader of Piper's blog and she recently started a thought provoking discussion about what positivity means to all of us. She is a 28 year old (the same age as I am) living with CF and is currently on the transplant list to receive a new set of lungs. She has recently called a Positive Charge: Blogger Challenge asking what positivity means to us.

Just like every case of Cystic Fibrosis is a different one, so are the lives living them. Whether you have CF or are raising a child with CF, we struggle everyday with staying positive in the face of adversity and all the challenges that CF brings. Positivity means different things to different people, and being positive can be just as unique as the disease itself. Piper asks a serious questions of all of us in the CF community, "Where does denial end and healthy positivity begin?" Are you staying 'positive' in the face of adversity, in 'denial' about it all, 'hopeful' or just being 'realistic?'

I have never been in denial about Lucy disease. The reality of CF is mine and Lucy's to live everyday, and I refuse to ignore it or deny it. My reality is that my daughter, Lucy, will die from Cystic Fibrosis. There is no maybe in the vocabulary, but there is a when. Cystic Fibrosis is a deadly genetic disease (the CF Foundation prefers to call it life-threatening) that will eventually take Lucy life, but I feel that I do have a choice about how we live our lives together while fighting this CF monster. I do have a choice about how I influence Lucy to enable her to view her world with a positive outlook. I will do everything I can to guide her on a path of happiness and truth. I will never lie to Lucy about her disease. CF is our reality and I will continue to be realistic about the disease, but I will also continue live positively with the life we have in the here and now!

While our past, present and future are always filled with the downside of CF: pills, poop, IVs, hospital stays, ports, feeding tubes, rectal prolapses, antibiotics and colonized bacteria, I never make it a negative point in our lives. Lucy loves going to the doctor. She loves wearing her mask and vest. She takes her enzymes like a champ, swallowing 7-8 pills at a time, and loves chewing her CF Source "monkey" vitamins. It may seem to Lucy that I am making these things a happy time for her. I do the best I can to make these daily treatments that she does, a positive and fun experience. These things we do everyday are the key to her good health and the ability to do more fun things to come in the future.

I never make CF treatments a focal point in our lives but they still must be done. Lucy must grow up knowing that she has to do these treatments in order to live a longer, healthier life with CF. Just as Lucy is learning to brush her teeth to help keep her teeth healthy, she will also learn that treatments must be done in order to keep her lungs healthy. The last two years that I have spent with Lucy have been the most fun I have ever had in my life. I will never take for granted the time I have with Lucy and we will be living our life to the fullest while we can. Lucy is just a regular smart, funny kid, living a fun toddler life, who happens to be living with Cystic Fibrosis.

We will continue to take walks to get ice cream:

We will continue to have fun doing amazing things, creating memories together:

I will continue to be realistic about CF and still be a positive influence in Lucy life. I will be honest with myself and Lucy at all times. I will never stop talking about this horrible disease that will eventually take Lucy's life. I will never hide my emotions from Lucy because sad moments sometimes call for a lot of tears. I will teach Lucy early on, everything there is to know about this disease so that she can feel confident and educated enough to fight this head on. I will always tell Lucy that she can do and be anything she wants to be if she puts her heart and soul into it. Sky is the limit and CF will not stop us from creating the positive, amazingly fun life that we want to lead.

It is completely possible to be 'positive' and 'realistic' at the same time.

Riding Vacuum

2010-03-14T12:40:00.000-07:00

Lucy loves to ride vacuum. Here is a short clip of her doing just that. Pay no attention to the mix and match pajamas and the bedhead!

She has always loved the sound of vacuums and hairdryers, even as an infant. When Lucy was just home from the NICU at nearly four weeks old, she came home with a horrible case of diaper rash and yeast infection from all the antibiotics she took while recovering from her surgery. I would give her sitz baths and air out the area with a hair dryer. The sound of the dryer made her go right to sleep or it would put her in a trance.

She has always loved the vacuum, too, trying to ride it whenever she can and helping push it around. I would wrap her up in my Moby wrap when she was smaller and vacuum the house. She would be sound asleep, comforted by being worn and the sound of the machines constant white noise.

Make an on-line slideshow at www.OneTrueMedia.com

Lucy Unplugged

2010-03-13T00:40:00.000-08:00

Lucy was feeling a lot better today. We hung out around the house all day and just worked on getting well and relaxing. She has made a huge improvement in her health in the last few days. No more fever, no coughing, and only a slight runny nose. I am postponing her Bactrim treatment and I'm keeping it on the shelf for another day! No need for antibiotics if it is not necessary! She fought those Staph symptoms all on her own. We will begin the next 28 day round of Tobi in the next couple of days to continue fighting the Pseudomonas. This will be her second month of Tobi.

While hanging out and relaxing all day in our pajamas, Lucy held an acoustic concert for ~~a live studio audience~~ me. As you can tell, she is in better spirits and was ready to put on a little show.

Photo and video editing at www.OneTrueMedia.com

Feverish

2010-03-10T15:27:00.000-08:00

For the last three days Lucy has been battling a 100-101 degree fever off and on, and is accompanied with all joys of a stuffy, runny nose. This is always a classic sign to me that the Staph is back but we already knew that information.

The last visit we had last month to the pulmonologist for a check up after her first month of Tobi, Lucy had a culture lab come back that showed that the Pseudomonas was 'gone' but that the Staph had come back. Lucy was not showing symptoms of Staph at the time, so Dr. Perez and I decided that we would not treat it with antibiotics. Too many antibiotics makes the Pseudomonas and other bacterias resistant to the medications and deems them ineffective.

Lucy is now showing all the symptoms that she is fighting infection. She has been miserable for a few days now. She has very low energy, lots of naps have been taken, lots of water has been drank and cool baths have been taken. She still has a mild appetite, eating small snacks through out the day but never any large meals. At least she is still eating!

I called her doctor's office today. Dr. Perez is on currently on maternity leave so I had to call Dr. Grumpy. I explained to him her symptoms, what I thought it was and asked him how he might treat it or if Lucy needed to come in for another culture. Lucy will be starting her second month of Tobi in just a few days and I wondered if an inhaled antibiotic like Tobi would clear up the symptoms she has. He told me "no" and that she would have to be on an oral antibiotic in addition to the Tobi, if things did not relieve themselves within the next couple of days.

The Bactrim prescription has been filled and will be sitting on our shelf for a while. Now I will continue to help Lucy get better on her own accord without the aid of antibiotics. I would much rather her fight off this Staph by herself to help build her immune system. The Staph she has in her lungs has already colonized itself (made a permanant home there). We can treat the symptoms of Staph, the fever and runny nose, but it will never 'go away.'

Snow Day

2010-03-06T16:17:00.000-08:00

I received a text message from my little brother on Thursday morning, "COME PLAY IN THE SNOW!"
My brother lives in El Dorado county, located in the foothills of the Sierra Nevada Mountains in California, at about 3,500 feet in elevation. It only snows at this elevation a handful of times during the winter but on Wednesday they got a foot of fresh powder! Lucy was so excited to go see her Uncle B and to play in the snow. The entire drive, an hour and a half in the car, she kept screeching with glee and yelling, "I build a snowman, mommy!" and "I go to B's house!"

The day was action packed and full of snow! Lucy and her Uncle B take time out of their play to give me a great photo!

Lucy played with three rambunctious dogs. The four of them love the cold snow and were romping around together. There is a black Lab, the gentle giant, Mary, a Collie named Whiskey and a white poodle Ziggy.

Uncle B helped Lucy make a jolly snow person with all the adornments that a snow person should have: hat, scarf, twig arms, carrot nose, rock eyes and a smile.

Lucy loved her snow person so much that she planted a smooch right on it!

After warming up and having lunch inside, we bundled up and went back out to play more! Lucy loved to snack on the fresh powder.

She attempted to make snow angels but I think she preferred staring up at the moving clouds and bare trees.

What a great day we had hanging out with Uncle B, his expectant girlfriend Kodie and the three dogs. I am sure that we will be visiting Uncle B more often with the new baby boy on the way at the end of April.

The Tooth Doctor

2010-02-25T14:35:00.000-08:00

Lucy's first trip to the dentist was a success by any standards! She actually loved it. Even the 45 minute wait in the reception area was fun. There were kids to talk to and magazines to throw on the floor. She was so patient. When I had originally called and made the appointment, they told me that they usually don't accept kids under three years because they don't sit still long enough for x-rays and a cleaning or they freak out and scream the entire time. Lucy was quite the opposite and was really excited to get "pictures" taken of her teeth. As the woman placed the x-ray shield on her lap, she yelled, "Look Mommy! A VEST!" She was more than happy to open her mouth wide for the placement of the x-ray film. She bit down and held extra still while they took the picture.
She was lead to another room for a cleaning. She was so small in the chair that they had to bring in pillows for her to sit on. She didn't mind being up high. They laid her back in the chair, placed a crispy blue bib around her neck and began the cleaning.
She asked me to hold her hand, which I obliged, and they began to clean her teeth, explaining and talking to her the entire time. She kept her mouth in smile position so they could use an electric rubber tooth brush on her teeth. The noise didn't effect her at all. She squinted her eyes tight because the overhead light was bright, peeking only out of curiosity of the new experience.

It took a couple of times to explain how to wrap her lips around the suction while they rinsed out her mouth for her with water. By the end, she had it down and the dentist was thoroughly impressed by her demeanor.

She was all finished with her cleaning, she sat up and asked the tooth doctor if she could see the light again. Dr. Dizon turned it on and put the light beam directly into her lap for a few seconds and then swiftly averted Lucy's attention to some pretty amazing stickers. Lucy was awarded with two stickers, one Cinderella, which she asked for by name, and on Snow White, a new purple toothbrush and toothpaste.

No cavities on this visit. We will return for another check-up in 6 months. Hooray for a great dental day!

Prolapse Again...

2010-02-25T14:09:00.000-08:00

Two days ago, Lucy had another rectal prolapse. This is the fourth time in about a year, the last one happening in September of last year. She had been acting really lethargic for a few days and being really picky at meal time and she was being a light eater, which is all very abnormal for Lucy.

On Tuesday morning, she woke up and was a grumpy monster! She was having tantrums over the little things and making quite the scene. I chalked it up to being just a bad two-year-old day until she stated complaining of a stomach ache.

She went and sat happily on the toilet, where she loves to do most of her reading. We are currently potty training and she, most of the time, tells me when she needs to poo-poo and sometimes when she needs to go potty.

We sat in the bathroom for a very long time that day. She had explosive diarrhea, cramping and was pushing extremely hard to get it all out, even with me sitting next to her telling her not to push! The rectal prolapse occurred and she had no idea it was happening. It is great that she doesn't seem to feel any pain from it but it is a little uncomfortable for her when I have to push it back in.

I called her CF doctor, who of course, just my luck, is out on maternity leave. If you remember my horrible day with Dr. Grumpy, her doctor's partner in practice, you'll know why I was a little worried about a call back about Lucy's butt. A nurse returned my call saying that Dr. Grumpy advised me to raise Lucy's amount of Miralax in her juice from a half a capful to a full cap (17 grams) every day. I really hope all this "butt juice" will help keep the prolapse away.

Team Lucy: Up And Running

2010-02-18T08:00:00.000-08:00

My personal page on www.cff.org is finally up an running. Team Lucy is now up and running for the coming Great Strides Cystic Fibrosis walk fundraising event. Our local walk will be on May 1st at the Sacramento State Capital.

Click below to sign up to be a walker on Team Lucy and donate to CFF. Help us find a cure for Lucy and the other 70,000 Cysters and Fibros world wide.

If you have any questions at all, please comment or email me at knt81@aol.com.

Baa Baa Black Sheep

2010-02-18T03:18:00.001-08:00

Lucy sings a lot. Pay no attention to the bedhead.

Photo and video editing at www.OneTrueMedia.com

Calories And Vitamin D

2010-02-17T08:00:00.000-08:00

With all the sunshine in our neighborhood lately, Lucy suggested to me that she have a picnic outside in the backyard. What better way to eat a Nutella and bacon sandwich than outside on a quilt. She ate and soaked in the yummy rays of the sun that are full of the Vitamin D that her body needs.

A Beautiful Day For Park Hopping

2010-02-16T15:33:00.000-08:00

Oh, California, how I love thee! The weather has been in the upper sixties nearing seventy degrees with the sun shining brightly. Lucy wakes up every morning and says, "Look! Sun is shiny!"

We spent the afternoon going to two different parks here in Woodland, and we weren't the only ones. There was practically a line forming to get on the swings. We had some time to kill before we went to her pediatric well-baby check-up so we played for over an hour. Lucy had so much fun playing. We had been cooped up in the house for weeks!

"Not Me" Monday

2010-02-01T16:06:00.000-08:00

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

I can assure you it was not me that has lately resorted to convincing Lucy that finger painting and coloring in her coloring book is her HOMEWORK! That is right! It's not me that is now beginning my third week of college, back from an extremely long 7 year hiatus, and the only way to get Lucy "out of my hair" so that I can do some algebraic equations is to tell her that she also needs to do her homework!

It is not me who has letting my blogging go by the wayside so that I may focus on my school work. I will always try to keep everyone updated but maybe not as often, sad to say. PRIORITIES!

It was not Lucy who was so exhausted after a long day. It was also not her that fell asleep during one of her one hour breathing treatments. She had finished her vest and inhaled medications and was down to doing just Tobi, which lasts half an hour. She was out cold! She was actually snoring!