Needle? What needle?

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!

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

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

Marching to the beat of her own drum...

Disney On Ice

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

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

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

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

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!

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

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

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!

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...

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...

...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?

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

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

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

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

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

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

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

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!

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

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

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

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

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

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

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

NeverEnding...

...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

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

Wordless Wednesday: Bed Sharing

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

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

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

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!