Update on our girl

Hi friends, thanks for stopping by.Can't believe its been almost 4 months since the last post! Where has the time gone? The summer is almost over and school is starting up, before we know it, it'll be fall! Sigh...

Since April so much has happened! Not only have we done a lot, but Violet has changed so much! Let me start with a few exciting things that have happened:

The girls took their very 1st gymnastics class at the Y, & both absolutely loved it!

They also went to a 4 day Princess Camp, where they learned about a different princess everyday.That was definitely a highlight of their summer!

My brother, sister-in-law & their baby moved to Florida, so Mom & I took the girls to visit them last month. ( Violet's 1st plane ride) We had a great time, but all came back sick, luckily Violet got the lightest case.

Violet's last CF clinic visit went well and ahe has now graduated to quarterly is visits. She still cultures the same organism she always has, but such a rare amount that it doesnt require treatment.She is getting taller and starting to lose some of the baby fat, which just means more Pediasure in her future!

As Violet approaches age 3 her attitude and demeanor are changing.She has always been so laid back and happy, but lately she is often clingy and sometimes defiant! Treatment times have become more of a struggle then ever before.I am often chasing her around trying to put her vest on, dragging her kicking and screaming. Or she boldly pulls the hoses out of the vest while its on, hoping to turn it off.All of this behavior is so new for a kid whos always done her treatments, perhaps not always willingly but never so eager to fight me. No matter her behavior I try to stay calm.I get it, being strapped to a vibrating machine with a mask on has got to get old for her, its old for me and Im just a bystander. I know she's just a kid and doesnt yet understand how important these treatments are, or that she'll be doing them the rest of her life.Sadly what she does understand Is WHY she must do them.

The other night she asked why Jesus made her with Cystic Fibrosis????

Gulp.....fighting back tears I replied, because he thought she was extra special.

She thought for a moment and then responded " I cant wait to tell Ava!"

From the mouth of our babe!

home sweet, can we go home???

As I write this, I lay here in a hospital bed, listening to my sweet girl snoring softly. After a long day, & rounding out Day 8 of this illness, it is no surprise she is worn out!

What started as a simple childhood virus, somehow took it's toll on our darling Violet and has now won us an over night stay in the hospital.Just need some IV hydration and on our way we shall be! Sounds so simple when you read it, but for a toddler its no easy task.Truthfully, I was more nervous about this admission then her first at 21 days old. As scary as that first time was, at least it was only Andy & I that were scared.Now Violet is old enough to put things together and figure out quickly that this may not be a fun place!

We kept telling her all week that if she didn't drink and eat she was going to have to go to the hospital and get a needle in her arm. Hey, I hoped maybe the scare tactic might've worked, but no such luck. After fighting a fever for 4 days, constantly worrying if she's eating, drinking and peeing enough, not seeming to show any obvious signs of improvement, mixed with me working and staying up the entire next day, I got a bit overwhelmed folks! Since Saturday the nurse side of my brain kept whispering " somethings not right, she may need help" while my mommy brain said " ahh taking her to the ER and making the poor girl get poked is more trauma then she needs". So Monday I called for back up! I played phone tag with the CF nurse, as she call for an update, check with a doc and call me back.Finally she called back and said we should just plan to be in the office Tues a.m. to decide what happens next.When the doc checked her over and calculated the almost 3lb weight loss since Weds, she decided we had to make a move before she gets any worse. So down to admitting we go.Wait, what? Even though in the back of my mind I knew where this day would lead I was unprepared! Other then a few extra pairs of panties, a pair of pants, hand sanitizer and some enzymes, I had nothing! Deep breath.....we will figure this out!!

Since Violet's diagnosis of CF I always knew hospitals would possibly be a part of our life, I just am not ready to accept it.I am even more grateful now that she has remained so healthy and that this is a minor issue that will hopefully be resolved in 24 hours. To all you mamas out there that do this often, I applaud you!!! They say everything gets easier the more you do it, we will have to see about that!?! Luckily Violet is such a trooper. Although it broke my heart to watch them poke her not once, but twice to start het IV, I can not express how proud I am of how brave she is. She keeps telling me how she cried because she was mad to get needle pokes but shes getting better now!

Is it possible my two year old is braver then me?? I think she just may be my new favorite super hero!

With her new Sophia doll she got from her nurse after he put her IV Iin

Has it really been that long?

Wow, hard to believe our last post was over 3 months ago! Back before Thanksgiving, Christmas, the new year, and before Snowpacolypse (or whatever people have dubbed this winter) even really started!

To catch you up very quickly, we had a great holiday season with family! Thanksgiving was unusually small this year on both sides of the family, so that worked out well. Christmas was a bigger ordeal. We celebrated on more then one occasion and even traveled to Cleveland for a rather large holiday gathering.It was a bit outside my comfort zone with Violet, but it was two days, and everyone was surprisingly healthy, other then Ava vomitting on the way home,( I like to think from possible pool water consumption) we managed to stay healthy.The girls got a new baby cousin, their only GIRL cousin, in November and we finally got The Vest in early December!! ( seperate post to follow soon)

Whilet the snow and extreme cold have been a pain, it is also somewhat of a saving grace. It is almost like an unspoken excuse for us to stay home and keep to ourselves, thus avoiding the nasty flu and other germs flying around.I almost hate to type it out for fear of jinxing us, but until this week the girls have been completely healthy, not even a runny nose! Starting to get a tad boring, but well take boring and healthy over sick and miserable anytime. Spring can't be more then 6 weeks away at the most right?

I like to believe everyone understands that keeping Violet( and all the kids) healthy is one of our top priorities. It makes perfect sense to me, and Andy and the other people in our life who witnessed how devastating it was seeing your 3 week old struggling in the hospital for 6 days. This is our constant reminder that while she is "normal" on the outside and looks healthy, she is not on the inside.It's because of the extra sticky mucus in Vi's lungs that any germs or infection that get in there become trapped and have to be knocked out with high potency drugs.

 So when people ask why can't she go here, or why isn't it ok for her to do this, that's why. I think it's a hard concept to grasp when it's not your everyday reality. I do not look down or think such questions are dumb. It really is true that people are naturally curious and ask questions by nature. Before CF affected my family, I had no idea what it really meant. Like I've said in the past, even in nursing school I think we may have gone over like one page of info about it, max. It was just summarized with other Orphan diseases that we flew right through. The more comfortable I've become with Violet's routines the more willing I am to share her diagnosis, which leads to more opportunities for questions. I appreciate any questions and all concern people show. No matter how incredibly wrong they may be, I appreciate the sincerity that comes along with each inquisition, and won't hold anything against anyone.

I have been chosen as the parent representative at our CF Care center to be part of a new program called One CF Center. It is a newly organized panel created to survey and improve the care of all CF patients as well as educating others on the way. So one of the things we are adding to our Spring event this year is to spread knowledge, but in a creative way. I don't want to shove facts down anyone's throat, and of course a science teacher I am not. So to do so in an informative way, I'd love to know what you may be curious about. From is there a cure? To how do you know you have CF? To what is a day like in a typical CF patients shoes? All questions are legit, and because you are wondering something, there's a good chance someone else may be thinking the same thing. So if you wouldn't mind please email or comment with anything you may be even slightly curious about, you will be helping us  get an idea of what topics to touch on. Thanks again for the support, and most of all for sticking around. I promise I will try not to go so long without a post! I swear working nights makes time go by even quicker, if that's possible!!!!

Don't forget to spread the word, our 2nd Wine, Cheese & Chocolate event will be Sat March 22 @ Belmont Country Club. (dress is business casual) tickets are $35 in advance or $40 at the door.you can purchase a table of 8 for $250. Bring your appetite and enjoy many varieties or red, white and dessert wines, as well as hardy appetizers and desserts. We will have 50/50 raffles, silent auction items and new this year, a chance to win airfare and a cruise for two!

Email victoryforviolet@bex.net to order tickets!



Ellissarae@gmail.com