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