Wow, 4 years have flown by! So much has happened and our little girl has changed so much as well!

Violet has had a lot happen the last couple of weeks. People continue to ask about her and how she is feeling, so I thought I'd go back to blogging to reach a bigger crowd at once.

Let me rewind and give you a couple quick highlights from the last 4 years....

•  The best thing, (I'm sure) that happened is Violet became a big sister in October of 2015! She loves being the second mommy and is so helpful with her brother! And by the grace of God, her brother does not have Cystic Fibrosis, and is not even a carrier * Every pregnancy has a 1:4 chance of having CF *

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• On April 26, 2015 Violet got to start a new medication called Kalydeco. This new drug was being called the closest thing to a cure for CF, and a miracle medicine. It had only been approved for the specific gene that Violet has, affecting less then 1,500 people with CF. Because it could only be taken be so few people it costs $25,000 a month! Thank goodness for insurance!In the first year of taking it she gained almost 12 pounds. This is great news, as a higher BMI is proven to have a positive impact on your lung function!

• Violet started school! Since she was now on Kalydeco we felt a little more comfortable exposing her to the germs at school. It was still nerve wrecking, but she has done well. As she was about to turn 4, she went to preschool, and then all day kindergarten and she is now in 1st grade! She is still uncomfortable telling friends about her CF, so when they ask why she has to take a pill before lunch she just tells them it helps her digest her food. (baby steps I guess)

• Violet has been doing gymnastics since she was 2 1/2 years old, and still loving it! She is in Girls Level 3, and sneaking up on her older sister!

• She is also on the competitive Swim team at the YMCA, and even has a stroke that she excels in for her age! We went back and forth about the germs in pools vs the great exercise for her lungs, and her lung function tests continue to be above average!

• In March of this year her grandparents took her, her sister and 2 cousins to Disney World! When she was 2 weeks old and newly diagnosed with this disease, I would have NEVER pictured this happening in her life. Luckily as she has grown she has become " germ aware" and carries her own hand sanitizer and her Grandma is very conscious about public places as well. She survived the trip, airplane ride and all without getting sick.

So after those major milestones she looks more like a " normal" healthy kid more then ever, right? While she looks great on the outside there is a lot going on inside her little body. Everyday is important for both maintenance and prevention.

• This is her morning routine, along with inhaled Albuterol and her vest treatment. This is what she takes when she is healthy. When she is sick there can be breathing treatments 4x a day along with an antibiotic and/or an inhaled antibiotic as well.
• She gets up 45 minutes before her sister so she can do her breathing treatment and take all of her medicine before we leave for school at 8:45 am.

 Making treatment time fun

 She loves her sweets

Doing treatments, even on vacation

So late August, going into week 3 of the new school year, she develops this cough. We increase her treatments and let it ride a few days. Tuesday after Labor Day I kept her home from school and took her to the CF Clinic. While she was acting normal she still had this weird cough. Not frequent, not productive, but when she coughed she almost couldn't stop until she gagged. They sent us for PFTs

 ( Pulmonary Function test) and while her numbers were good, they were a bit of a decline from her normal. The doctor did a respiratory swab and sent her home on Augmentin x10 days. We would come back and repeat her PFTs in 2 weeks and if she didn't improve we'd think about inpatient antibiotics. After 3 days her cough was almost non-existent, she was acting normal, going to school and swim, no reason to think anything was wrong. Day 6 we get news from the clinic that she cultured Pseudamonas Flourescans. This is scary news, bc in the CF world this is the sister of a very dangerous organism that can be very hard to get rid of. Now we are on an inhaled antibiotic for 28 days. This is done after her regular breathing treatment and vest, adding another 20 minutes to her already half hour breathing treatments. Yet she does not complain, she feels well, she is not contagious, so she is going to school and swimming and doing gymnastics and even had a birthday party. It is so hard to look at her and how healthy she appears, and know there is a whole lot going on inside. So now we finish the 28 day course and then we wait a week and re-culture. And then we pray and hope and wish for the P.F. to be gone. Violet has been so fortunate to not have more then an overnight hospital stay since she was 3 weeks old. I'm not sure how any of us would handle 7-10 days of her being in a hospital room.

Another development brought up at our normal July visit was the size of her tonsils. We were referred to an ENT not because she frequently has strep, but bc of the size of her tonsils and the way she snores at night, which may be impairing her breathing. The Dr said she is definitely a candidate to have them removed. So now we are weighing the options of having her tonsils out. On one hand the kid may likely have a future of breathing issues as she ages, so why not remove something that can contribute to that struggle? On the other hand she is only a 6 1/2 year old little girl, do we really need to put her through that?

Has anyone had an experience, good or bad having their child's tonsils out? Do you regret the surgery, or are you glad you did it? Thanks for spending your time reading with me!

Doing her PFT

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

Our fuzzy little bear

As the leaves continue to change, and a chill enters the air, things begin to change around here too. We get our flu shots, stock up on hand sanitizer, lysol wipes and then we put our little bear into hibernation.

 

 ( Hey it sounds more pleasant then isolation)

 

 

In the warmer months we tend to relax on our restrictions, and become almost careless with our actions. Go to the zoo? Have play dates? Take the kids to Meijer? Sure, why not, it's summer.

 

 

 

 No one gets pneumonia or whooping cough when it's 90 degrees, right? We have been pretty fortunate to have avoided any major illnesses lately. With that said, it is more then luck. It is diligence, dedication and good old fashioned hard work. From not only Andy & me, but our families, and our friends.

 

Seeing our 3 week old baby struggle to catch her breath is an image that will forever be ingrained in the back of my head. Anytime I doubt our decision to keep Violet home, or feel bad about canceling plans with someone else, I recall how that felt and it authenticates our choice.

 

 

 

So friends, please understand if we are a bit isolated these next few months, it is nothing personal. while a runny nose or an occasional cough may be nothing for your kid, it can be a nightmare for ours. While we enjoy your company, and will miss out on a few exciting things over the winter, rest assured when the tulips start sprouting next Spring, the O'Learys will be back into ( healthy) action!

 

With the Halloween celebrations begining, and Ava and Violet's birthday celebrations ending, this marks the beginning of our "hibernation" period. The last few weeks have been fun, but with colds and flus running rampid, we are back to safe mode!!

 

See ya in the spring :)

Happy 2nd Birthday to our baby girl!!

Cake for breakfast? It's her birthday, why not?

 

 Born Sept 23, 2011 just after 3am

 So tiny with such a big cry!

Our baby girl two years ago

 

Violet Jane, so much has happened in two short years. You have had scary moments, and even after we were dealt some of the most devastating news just days after your birth, you continue to be such a joy for us, and every day is such a gift! Saying that you are thriving is an understatement! It has been a LOT of work but you have by far had more healthy days then unhealthy and for that we are so thankful! You have made it another year without a hospitalization, and while that isn't a goal for most kids, for you it is awesome!

You impress us with your adult like vocabulary, your charming personality, sweet raspy voice, your shyness, adorable cherub cheeks, and you melt our hearts with the love you exude for your big sisters!

Happy Second Birthday Big Girl! We love you so so so much!

 

Worn out after her party

 Singing Happy Birthday

 The O'Leary and Lawson girls

 Loving their Uncle Daaron

 

 

 

A Day to celebrate you and your cuteness....a montage of some pics since your last birthday!!