Well that didnt take long.....

It always amazes me how women can turn something good into something so terrible soooo very quickly. I don't mind taking some flak for this one, it is what it is.

Remember that group I was talking about? Yeah, total disaster. My way, your way, this way, that way. My way is the best and your way is uneducated. Ugh!

I cant take it.

This is why CF continues to be such an isolating disease.

Between the computers and the Internet, between Facebook and Twitter, between here and there.....somewhere CF should be getting its ass kicked and the isolation SHOULD be minimal.....but its not because no one can simply say "Hey, I didn't know about that." or "We don't do things that way, what's up with that?" without being called uneducated and ignorant.

I love my bubble.

You guys know this.

I ventured outside my bubble and, once again, I was reminded exactly why I don't go there.

I am not the "i am woman, hear me roar" type. I don't side with the feminist movement, I get a lot of ugly looks because when things get petty and catty my favorite thing to do is shrug my shoulders and say "f*&king females"....

So I'm going back to my bubble. A place where my daughter's weight is always on target (even though I always want it higher), a place where she has never been hospitalized (Thank you God), a place where we work out the kinks in her care with determination (and yelling and tears) and out of love....and that is good enough.

My bubble is good enough.

Who loves Scandishake? WE love Scandishake!

Natalie has been on nutritional supplements since she was 18 months old, her appetite has never been fabulous, we have had struggle after struggle trying to figure out what foods she likes best (changes weekly), what she "feels" like eating (usually not much), and at the begining (18 months old or so) we usually ended up settling for whatever Natalie decided, as is usually the case with a toddler, you cant MAKE them eat.

Initially we started Natalie on Pediasure....it was the sure fire answer to our prayers, packed with vitamins, fat, calories, and protien. It worked too, she gained at whopping 3 pounds in 3 months and we were more than happy to fork over the $9-$12 per six pack in order to keep the weight piling on. After 6 months, the weight gain started to fall off and the doctor added Periactin to our medication regimine. We didnt think much about it and continued with the Pediasure and the Periactin and continued to slowly add on some weight. Up until about 6 months ago.....then, one day, Natalie said "No".....uh oh?!

The extended time drinking the Pediasure had taken a toll on Natalie. She was TIRED of it and she absolutely REFUSED to drink ANYTHING out of her sippy cup because she thought it was all Pediasure....we had to get her used to her sippy cup again AND find a new way to sneak in some extra calories. Enter Scandishake!

Scandishake is NOT a meal replacement and IS NOT fortified like Pediasure is, but when it comes down to calories, weight gain, and taste....it wins HANDS DOWN! Granted it is more expensive, $9-$12 for a four pack, plus its not pre mixed (you mix it with 8 oz of whole milk) and if you try to drink it before its fully dissolved in the milk, its kinda grainy (blech!) But if you do it right, I havent found anything that beats it, AND Natalie will drink it, even after our unfortunate Pediasure experience. It comes in different flavors (vanilla, chocolate, strawberry) and it has 600 calories when mixed with 8 oz of whole milk (woot!!)

So anyways, just an opinion, it has worked for us so far......hopefully she wont declare war on Scandishake too :)

Oh the guilt that comes with brushing her hair and telling her "No"

I love waking up in the morning to her morning breath and her saying "mommy, the sun is awake!". There is rarely a time when she doesnt start my day off in a really great way, I love this age and all of the curiosity and imagination that comes with it. Natalie is 3, but she is soooo smart....i know, i know, all moms think theyre child is the most beautiful and the most intelligent, we're supposed to :) After the initial morning routine has been completed, c'mon you know the drill......the fight to brush our teeth, whats for breakfast, what kind of "food mood" is she in today, enzymes, periactin, vitamins, 15-20 mins of CPT *whew* goes by quickly when you're typing it, but its at least an hour and a half process, she's a slow eater.....Anyways, after all of that comes the day's regular activities. I had to run to work this morning for a minute and so, of course, Natalie needed her hair brushed.....and this, of all fights, seems to be one of the most heartbreaking. I have detangler but she cries anytime she even sees a hairbrush. Yes, she has to have her hair brushed, yes, it must be put back, otherwise it goes in her mouth. But with all of the fights that i MUST have with her....the CPT fight, the blood draw fight, the chest xray fight, the nebulizer fight, i feel the most guilty about these, the dumb ones, I mean, in the grand scheme of things, what does her hair really matter, must she cry over this, must i be so insistant on the hair being brushed??? Then its off to the store to pick up some applesauce, the portable kind, that has the lids and are "single serving" so we can go out and about for a while without worrying about getting enzymes in her, and of course now there's the toy fight. Christmas just passed and i find it absurd that the child could possibly want anything more. We went way overboard for Christmas (we usually do) but somehow, even though there are still presents she hasnt fully appreciated yet, there is still the "I see, I want". Must she cry over a $2 toy? must i say "NO"? is the principle so important that I would have her cry over something so small when she has so many other, more important things to cry over? Day in and day out she tolerates things that other children have no idea about. Shes been poked and prodded and xrayed and tubed and monitored......doesnt this deserve a little wiggle room? Doesnt this deserve a break from "mommy the nag monster"? Or is it simply that I am so overwhelmed with guilt, i feel guilty that she has to endure this, why not me? Ive prayed and prayed, "God just give it to me, let me have her pain, let me have to take the meds, let me be the one to do the treatments, just let her be healthy and give it all to me" In the end, this is what we have been chosen for, in the end she must learn the lessons that all children must learn: hair and teeth have to be brushed, you dont always get the toys that you want, when you want them, everyone is different, friends are special people, sharing is a good thing, do unto others as you would have them do unto you, and Mommys are there to make sure you know how things are supposed to go, even when they themselves do not understand why they are this way.

Not everyone needs enzymes.....

Natalie is the only person in either of out families to have CF, we can go back 4 generations and know for a fact that it was never diagnosed....that being said, I have a 6 month old niece. She's a cute little chubby thing (no CF) who likes to stick things in her mouth, bang things together, and shriek for no reason :) I was babysitting her and as I was getting Natalie set up for her breakfast, I was also getting my niece's bottle ready at the same time. After I finished with Natalie's enzymes and sat her plate in front of her, I picked up my niece and started to feed her her bottle.....Natalie looked at me very confused and said in a very accusing tone, "MOMMY....YOU FORGOT AVERY'S ENZYMES!!!" My heart dropped and swelled with pride at the same time..... I told Natalie, "Baby, not everyone needs enzymes, but good job on telling Mommy." I was sad that I had to tell her in a round about way that she was different, but proud that she is so conscious of her own care, and the care of others, that she knew that youre supposed to have enzymes before you eat. So goes the ups and downs of CF life, small victories, pride in the strangest of places, and what seemed to be such a strange and difficult routine to establish, has now become common place for her, for all of us.

The good days, the bad days, and the ones that make you want to cry......

I am a nurse by profession, a mother by the grace of God, one of my daughters just happens to have CF. I am a fiance, a daughter, an Aunt......I wear many many labels and all of them is a caretaker in one form or another, this is my lot in life, i enjoy it, i thrive in it, but when I percieve failure, I can make life very hard for me :) Especially when I am thriving on the professional end but feel like I am struggling at home, when my patients are all doing well, and I cant even get Natalie to take a bite of food, that day, that moment is a hard pill to swallow.......




Today was a good day........one of those, the ones that make you sit back and say to yourself, "Im okay, she's okay, we can do this" . Natalie has eaten well all day, 4 pieces of bacon and a piece of sausage with grits for breakfast, some apples and peanut butter with a pediasure for a snack, chicken and fries for lunch, and the list goes on and on, shes been a human vaccum cleaner today and that, my friends, makes for one happy mommy...........The problem, it seems, that there arent that many days that are just okay....maybe its just being in the midst of it makes your memory short, im not sure either way. I know that finding high calorie foods that are have real nutritional value has been the new mission in my life (aside from raising my two little girls). It seems like everyone is so calorie conscious, i have to do two rounds of grocery shopping, one round so Natalie has her high calorie, high fat, high protien diet, and another round so the rest of us dont blow up like balloons......the attempt at balancing is never ending, but what a ride, huh?




However, everyday is not so blissful. There are days when she would rather do ANYTHING other than eat.......days that im lucky to get 500-600 calories in her, days that i want to sit and cry, days that it seems that a feeding tube is coming and would be a blessing, days that i just dont think that God chose the right mother for this little girl because Im OBVIOUSLY not doing something right........then she crawls in my lap and says "mommy, i so glad youre here" in that sweet three year old voice, and i know im here for a reason and there's nowhere else Id rather be.