Hello April

Another month has flown by. I wish I could say and with it brings warm weather, but then I'd be lying. 

Trying to beat the cabin fever

 One thing I can say, that everyone has said at one time or another, is that time flies by way too quickly.You wait 40 long weeks for the baby to come, and those weeks seem to trudge along. Then the baby comes and things happen in warp speed. Am I right? You blink and you might miss something. A baby's first laugh, a toddler's first steps, a child's first day of school, etc..

The Munchkins decorating Easter eggs

 

One important thing I've realized in the last few years is that as cliche as it is, you have to make the most of everyday. Tomorrow is never promised, so live for today.Quite often I have to remind myself of that.With that in mind, I have to share a story. I recently met a woman who during just a short encounter, really touched my heart. She was fairly young, and battling cancer. She'd beaten it twice, but this time it is back and mets to her bones, mainly her spine. Not a good prognosis, but she had the best outlook. She told me when she starts feeling bad for herself she thinks about Helen Keller, and how it could be so much worse. I somehow brought up Violet and shared the story of her illness, (thinking how lucky I am that she has CF and how it didn't come close to being as terrifying as terminal cancer,)and was shocked when the lady asked to see a picture of her. With tears in her eyes said she can't imagine the heartache of a sick child, and she'd pray for her, and our family. Gulp. How selfless of her. How selfish am I, are we all, when we complain about the little things? The things that in the big scheme of everything don't mean jack! I'm not saying none of our problems are dire, and I don't think people should restrict their ranting.(when your having a bad day sometimes it's all you can do) I have  come to the realization that the more time you waste complaining the more time you lose out on doing things you can enjoy.

 

 

 

As April begins, and we eagerly await for Spring to really start, it also signifies the end for other things. 5 more weeks of school for me. I finally see the light at the end of the tunnel, meaning more time home with the girls,less opportunity for Ava to ask if I have to leave again, more time to exercise and stop eating out of vending machines,and most excitingly the next time I pull 12 hour shifts in the hospital I will be getting paid to do so, not paying to do them.

 

 

 2 more weeks until our first big CF event, all thanks to my mom and her organizational skills. They say it takes a village to raise a child, well I say Bonnie does the work of a village with a little help from her good friends to pull things off perfectly.

 

Less then 5 weeks until our Great Strides walk for CF. This will be our second year participating. Last year we had over 100 members, and were able to raise over $34,000. We are so proud of our success, especially for being an inaugural team. This year we are off to a good start with 76 members, and over $10,000 raised. I am hoping to blow past our amount raised last year, but the time is winding down. I sometimes wonder if we did so well last year because of the shock of Violet's diagnosis? Now that the shock value is gone, it's a lot harder to motivate other people without being pushy. I hate asking people for money, even though it's not going to me, or even to my kid directly, it still feels awkward. Yet I continue to do so because I know it will have a positive impact not only on Violet but many other families. People are surprising. Like I've said before sometimes strangers are the kindest souls, and sometimes the people we imagined might take an active role sit on the sidelines. It always astonishes me when friends of family or my friends' friend or family are generous to us. They have no obligation to us, yet they choose to kind because they are just that, genuinely kind people. No matter how you know our family, or have come to find out about Violet and her cause, we'd like to say Thank You.

 

 

Thank you for thinking about our baby.

Thank you for making that donation, big or small.

Thank you for offering your help or acquiring that auction item.

Thank you for joining our team and your fundraising efforts.

 Most of all Thank you for your kind thoughts and inquiring about Violet's health.

 

 

Thank You from our family to yours!

 

Long time no post

Hi friends!

It's been a bit, well more then a bit! (almost two weeks) Where has the time gone?

 March 3, 2012

Speaking of where has the time gone, this is Violet almost exactly a year ago!

And this is her the other day.

What a difference 1 year can make!

 

I just had to share such cute pics.

 

Anyhow, back to my update... I made it to DC and back, and everyone survived the trip. The girls did better then I expected without me (sadly), and I without them.

Us with Dr Beall President of CF Foundation

 

The conference was great, and I am so glad Mom and I went. We heard a lot of special people speak, and listened to others share their stories about CF. While it was quite sad to hear from parents who unfortunately lost their children to CF, it was endearing and inspiring to see them continue in the fight to find a cure for all the other children and adults battling CF. It is awesome learning about all of the chapters around the US helping to raise more then 75 million dollars last year. Some of the larger chapters alone raised over 1 million themselves. It was unbelievable to hear about the medical advances that have been made over the last year, and to get to see in detail how close they are to another miracle drug to help fight the largest gene mutation out there. What a miracle this may be! I only wish that if we are invited again that Andy can come along to share the experience. It would be even more amazing if by chance we do return someday,that we would be able to share how Kalydeco  has positively affected our daughter's life....but our dream, reality, is still " yet to be determined"

 

Dr. Beall's face lit up when we told him we have a baby with G551D. He assured us she will be ok, just as soon as she can get the "magic blue pill" He informed us they are doing clinical trials now in children 2-6 years old, and if she can't get on it earlier, at least we know she will be a candidate at 6...But boy how things can change in 4 1/2 years. No matter who tries to reassure us that Violet will live a long happy life, the cynic in me keeps thinking " I'll believe it when the pill is in my hand". Until then it just seems too good to be true for us! I hope I am proven wrong!

At the hospital waiting for her X-Ray today

Today was a great clinic visit. Andy and I both got to take her, and she did marvelous! Besides being put in the torture contraption for her X-Ray, and being laid on the measuring table ( for whatever odd reason) there were no meltdowns. Perhaps the tag team approach with Mommy & Daddy both there was double reassuring? Or maybe she was more comfortable with the female doctor? Whatever the reason, we are relieved.

She gained weight since last visit, and her X-Ray improved. Now we just spend the next few days impatiently waiting to hear nothing has grown on her throat culture, and all is well around here!

 

Now I hope to live off the motivation I captured at the conference and pass it onto our friends and family! We will continue to raise money, because money buys science, and science buys lives! We are working to make CF stand for Cure Found!

 

 

There is still time to join our team for the Great Strides Walk May 4th. Or if you are unable or unwilling to walk, please consider a donation to help our team reach our goal again this year.

www.cff.org/great_strides/violetoleary

 

And don't be left out on our 1st ever Wine, Cheese & Chocolate event Friday April 12th 7-10pm @ Belmont Country Club. Tickets are $30 each and can be purchased by emailing VictoryforViolet@bex.net

 

* Every cent goes directly to the CF Foundation*

How could you say NO to this face??

 

Or this one???

 

 

 



Seperation and Anxiety

A while back I made plans. Then I counted down the months, then weeks, and days. Now folks we are in the homestretch, down to the last 24 hours until it happens (drum roll please) Tomorrow I will be getting on a plane, and leaving my babies for the first time EVER!!!

 



My two sleeping angels

 

 Waaaah. I know, I know, what's the big deal? Moms need me time, so I've hear.How sad  glad surprising that in over 3 years I have never gone more then 24 hours without seeing Ava, and barely more then 12 hours without seeing Violet?!?

 

My mom and I will be going to an important CF conference, stacked with doctors, nurses, other CF families, and tons of valuable information. It's  definitely not like the Spring Break trips I took 10 years ago, (Before Kids) but it exciting for me in a new way. I'm sure I will enjoy my time and get a lot out of the trip, yet I can't shake this strange feeling I have. 

Guilt? Anxiety? Stress? Possibly excitement?

Whatever the feeling, it is not one I can accurately explain. As strange as that sounds a loud, maybe someone can relate? Any hands out there?

 

Anxiety, yes, Stress, sure, but why? It's 2 nights, and yet maybe deep down I'm feeling like I'll miss out on something. (Over protective, ok I'll admit it)What if the girls miraculously grow 2 inches? Or start speaking another language? More realistically, what's going to happen if Violet wakes up wanting to eat in the middle of the night? Or what if Andy doesn't hear her? What is Ava cries inconsolably for me at night? Or most frightening of all, what if they survive and are just fine without me?

 

 

I know they can feed themselves, and/or each other, that is a plus!

So even if Daddy let's them stay up late...

 Or lets them play with their food and make a huge mess, especially when it's not bath night!

 Even if for some reason he teaches them how to hunt animals...

 Or lets them draw on themselves and drink juice boxes til their hearts' content.

Even if he lets them dress up like a dog and cat and sit on my bathroom counter...

 

It won't be the first time they've done it!

Most importantly, if that's the worst that happens, they'll SURVIVE!

 

Now it's just me surviving these 2 nights we should be worried about!!!

 



SOOOO Big

While we were busy this weekend, someone turned one month older.

 

Violet Jane 17 months young

 

This is her last month that she's still closer to 1 then 2 years. It hit me yesterday (when she asked for pigtails like her sister, and helped pick out her own clothes) that our baby is less and less baby and more toddler everyday.

Sad face.

 

 

My little baby girl has really grown up lately! She is wanting to feed herself more often and becoming a professional with the spoon and fork. She is tugging on her pants telling me potty, which I am NOT ready for, (whether she is or not) and most astonishing is her growing vocabulary. She is putting 3, 4 and 5 words together. Violet actually looked at me the other day and said " open this please momma" Umm excuse me?

She got it in her mouth, and kept the mess to a minimum. A+ work kid!

 

And she is back to her healthy, smiley, singing and dancing self! Her appointment on Tuesday went pretty well. Besides that she lost some weight from being sick, her lungs sounded nice and clear. They got a good listen this time, no hysterics, just a few fake whimpers. So it seems like Daddy taking her to the doctor worked out well!

Pretending like she is NOT feeding Gypsy :)

 

The cloud has lifted

I think the cloud has finally lifted! Dare I say it, everyone is back to par. We are once again a healthy household! ( I even escaped without becoming a victim..knock on wood)

Reading in bed

Violet finished her antibiotic today, and has a follow up appointment to confirm her recovery tomorrow. Her fever and runny nose are long gone, and her cough is minimal. Hoping for good news tomorrow!I have a long day of precepting and class tomorrow, so Andy is staying home and taking over the reigns. Daddy daycare, and operation take Violet to the doctor will be in full effect!

 Both pretending to be babies

Fast Asleep

While I am a tad nervous that I will be missing the appointment, I am also anxious for the outcome. Of course I  have written down what to ask and what to tell the doctor, even though Andy is fully capable of answering himself. The last 3 months or so of appointments have not gone well. The same thing happens every time we go to the pediatrician, the clinic and the worst in the ER. Violet is fine in the waiting room, but as soon as someone comes at her with a stethoscope, or dares to put her on a scale she loses it, and everything else is just a struggle. She is even hysterical now as soon as the visiting nurse gets here, before the shot is in plain sight.I know it is frustrating all around, for her, for me, for the nurses and doctors, and the most frustrating part is that I am aware there is no way anyone is getting a clear listen to her lungs and heart. So I'm hoping maybe it's just me and things will be completely different when daddy's with her.

Cheeeeeese!!

The house of sickness

After dealing with Ava being sick for over two weeks I've been looking forward to getting back to our normal routine. I can't really complain though, she's been sleeping in (til 9, 9:30,10 and even 11 one day,is she 3 or 13 years old?) or about the few brief moments of cuddling we (I) enjoyed while Vi napped.

Our sicky girl
Overall fever,cough and runny nose or not she still acted like her normal cheerful, high energy self the majority of the time. Of course it makes me sad, nervous, concerned etc when Ava is sick, because it doesn't happen all that often. However I never get too worked up because it is never that serious and I know she'll be just fine and recover, fully.

Posing Tinkerbell

Sisterly love, sharing their germs
 

Now my daughters have traded places and Violet is the sick one. It started this week with just a slightly congested nose. By Wednesday she was throwing up mucus, and starting to cough a little.

For the last 3 days I've been helping her fight a fever, running after her with a tissue and hand sanitizer,and doing an extra treatment a day to make sure this congestion doesn't settle into her lungs. I've tried teaching her to spit into a tissue when she has these wet, hacky coughing spells, but she just puts her mouth to the tissue and blows. I've sat up with her during the middle of the night counting her respirations, forcing her to drink, holding a cool rag on her hot little forehead.

Big girl holding her own mask
 

As few times as Ava's been sick, so far the times Vi has been sick are even more rare. So when it does happen, and since she is a toddler with a lung disease, I worry, a LOT.Yesterday as her cough  started to change, (it is now like a 20 second hacking smoker's cough) I grab whatever is in reach to hold up to her in case she spews mucus all over me again and I cringe. Not because I'm grossed out, but because I see this possibly foreshadowing our future. I get this pit in my stomach that this COULD one day be her "normal" cough. Yet I've somehow let myself believe my child will never sound like that, she'll never be that sick.
Today after talking to the on-call Pulmonologist we took her to the ER.

All worn out
She was a brave little girl and endured a throat culture and a chest x-ray, but not without a fight. A few hours later, we got the diagnosis: Bronchitis. Sputum culture will take a few days of monitoring to confirm what's growing in her lungs, if anything.In the mean time antibiotics for 10 days, continue breathing treatments every 4 hours and Tylenol/Motrin as needed for her fever. We should see the fever break and an overall improvement in the next 48-72 hours, definetely looking forward to it!

On our way home, hospital admission averted!
Thanks for the prayers!

Grass isn't always greener....

Hi friends! Just a quick update to let you know, Violet did get her Synagis shot for January!However, how much we'll pay out of pocket, or if it will be approved this month is yet to be determined, so the saga continues....

All dressed up for a tea-party

We have new health insurance this year, and let me tell you, it's only February 1 and  already it has been a full time job for me! Yesterday I spent the majority of rest time on the phone (when I was really hoping for a long hot shower and some peace and quiet ) calling the insurance, then the CF clinic, then the pharmacy, then the insurance again, then the doctor called me and I was introduced to a new pharmacy, who when I called had conveniently " closed early for inventory" Ahh....Dead end, back at it again this a.m.!

Along with this new insurance, (who promised no prescription co-pays would change, along with continuous coverage of the same things we had before)came a lot of " not covered" " needs prior authorizations" and " exceeds maximum coverage"...GREAT!

Lucky for Violet, her mama does not give up easily!

It's funny that when we had Aetna I wasn't thrilled, and I always thought that someday we'd get a new, better insurance. Ahh those days are gone! I remember (in my pre-baby days) paying a lot more for birth control pills then most of my friends. I bawked at some of the outrageous remarks the insurance made, and how they considered some things " not medically necessary" or  " experimental" and footed us the entire bill. Yet after having two babies, I have to say our copays, pre-pays and even prescription coverage were reasonable.Still there had to be a better option out there.

Violet's daily regimen of enzymes, salt, Multivitamins, albuterol, and PediaSure

She takes 4 enzymes every time she eats anything, that's up to 24 pills a day

 



The grass isn't always greener, and so we are learning....

After our visit to the clinic this month I went to a local Pharmacy were I was told, by the insurance, and doctor's office that we could fill her 3 month supply of meds. No, they can only fill 1 month at a time ( Strike One), and that 1 month supply will cost almost as much as the 3 month supply was previously ( Strike 2) and if we did want to fill that 1 month supply we'd have to come back in 2 days because they had to order this " uncommon" medicine ( Ugh Strike 3, I'm outta here)
Luckily our clinic directed me to a Pharmacy that deals entirely with CF patients and their meds. Awesome. I call, I set up an account, I let the doc know and he faxes a script for a 3 mo supply, and then 3-5 business days later the meds will arrive at our house at a lot cheaper price then through our insurance. Fingers crossed it all works out this simply.

Nutella mustache

Here it is February 1, and between visits for the 4 of us, we are already well on our way to meeting our family deductible for the year. That can be good and bad news I suppose. It means once our deductible is met we only pay 10% of the services, co-pays etc, but not sure it'll even benefit us come prescriptions. That is a shame, and as bad as it may seem for us, I can't fathom what people with out any insurance have to endure. Worse yet, I can not even imagine the fights and pre-auths and such we will have to go through when Violet is old enough to start on Kalydeco.This important drug, is currently only available to kids and adults 6+. It will miraculously help reduce her symptoms. It is a miracle and a necessity. Did I mention the market price for Kalydeco is over $25,000 per month??

 It's always princess time at our house!

 

Muah! Blowing kisses!!

 Captain crazy hair

Trying to play Just Dance 4

Kylie is playing, and the little girls are probably more in the way then anything!!