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!