And the verdict is.......

Just to back track for a second... We went to the clinic on Tuesday and Violet was re-cultured.
 ( Swab down the throat, and specimen placed on a petri dish to grow, just like back in high school chemistry) This takes 3-4 days to cultivate and then is identified and results are given.

With such a sweet face, who'd think serious things could be going on inside??

So the last 3 days have been sheer and utter suspense, very hard on the nerves! Well ok, we've found a few things to keep us busy and keep our minds from wandering.

 Ava & I made Daddy a birthday cake

We celebrated again last night at Mimi & Papa's

 

 

She is sooo close to taking that 1st step..( tear)

We play fairies and princesses and ponies, and of course we read books

That's Violet's favorite thing to do!  (other then eat & climb stairs)

 

So here it is Friday, and although I was eager to hear the results this am, (all week I planned to get up early and call right @8am when they opened) there was also a feeling of hesitancy, whether deliberate or not. At 9:15 I woke up, and just laid there wondering if there would be a message on the answering machine when I went downstairs. Or did my cell phone ring and I didn't hear it somehow? I bet since it was so late Andy got sick of waiting and called himself, maybe?

Both girls are still asleep so I sneak downstairs and look at the answering machine....nothing. Rush back up to my room and look at my cell phone, just as text from Andy saying " Well? Anything? Hello?"

Guess it's time to make that call..ugh..the dreaded new.Either our angel beat this nasty bug and we can be thankful and get back to our normal routine, or we are headed to the hospital for the next 2 weeks or so to make SURE we get rid of it, totally!

 Finally all these days of waiting are about to end, the suspense will all diminish in just a few short minutes....AND THEN we get the worst possible answer...Not a negative, not a positive but a " we need more time for the specimen to grow in order for it to be properly identified, unfortunately because of the holiday, were asking you to call back for a final result on Tuesday."

 

TUESDAY??? Like 4 more days??? So that's a week of waiting total....this will be the longest weekend. EVER.

At least Ava still has her baby sister at home 

 

So once again, all we can do is wait...nothing we can do or say to change things, speed them up or delay the inevitable. We will just have to find a way to enjoy our time as a family.....I think we can handle that task!?!

A Day for Daddy

Happy Wednesday Friends! Today is a day to recognize someone we love and appreciate so, so much...Kylie, Ava & Violet's daddy and my husband Andy. He is 34 years young today, and we have spent the day trying to make it special for him.

 

 

 

 

 

He is a great father.

Adoring husband and best friend.

Awesome uncle and God father

Loyal and loving son and son-in law

 

 

 

Quite handsome too!

 

 

 

 

Andy is a hard worker..He works all day and then comes home and still doesn't get to relax. Half the time when he gets home, we are messing around trying to make dinner, waiting to run errands, or rushing to get to our weekly family dinner at my parents' house.

Life can get chaotic, especially in a house full of females, yet he always remains calm!

 

Happy Birthday!

Love your girls,

Ellissa

Kylie

Ava

Violet

Gypsy & Bella

 

 

 

 

Merry Monday

My and my brother's dog Sophie

It's a gloomy day outside, but our house is full of excitement! This week is  big week for our family. My childhood dog is having surgery Tuesday, Andy and our twin nephews have birthdays this week (which means celebrating) and most importantly Violet gets a throat culture tomorrow.

This means by the end of this week (hopefully) the waiting will end.

Just reading all about animals, she loves looking at books and turning the pages

Since she cultured Pseudamonas on July 9th we have been stuck in this waiting game. 28 days of antibiotics, then waiting two weeks, then a second culture and another 3-5 day wait.....Were in that home stretch...but the waiting gets more intense.

We either find out that the bug is gone and we hope and pray that it stays gone for a LONG time. ( Chronic Pseudamonas is very common in CF patients over the age of 10)

http://www.aboutcysticfibrosis.com/cystic-fibrosis-pseudomonas.htm

Or if we weren't successful at eradicating it with oral and inhaled meds, then we head to the hospital to get IV antibiotics....and the chaos of balancing Ava time with Violet time will begin. What's weighing more heavily on my mind, (in the very, very back, because I'm sure were going to hear good results) is how would we keep an 11 month old entertained in a hospital for 2 weeks? Having her play on the floor would be my biggest nightmare, and she's not quite walking, so then what? Make her sit in her crib or on my lap all day? Boo...

Violet is so adventurous..she just cant stay still!

It seems like this could be the hardest age to be hospitalized.......As a newborn all she did was sleep and eat, so laying in the crib or on me was fine. As an older child she will have school work to do, technology to keep her busy,visitors to talk to, but as a baby/almost toddler? Of course she wouldn't be the 1st toddler to be hospitalized, so Im sure the nurses can help us get creative. And certainly if she is still positive for pseudamonas we will figure something out and do what we need to do to get her healthy, no matter what the sacrifice.

We are so blessed that she has been as healthy as she has been so far. I feel for those families who have not been as fortunate. I know we have a long road ahead of us, but in the meantime we try to let Violet be a kid and do as much fun stuff as possible. ( As long as it's not exposing her to too many germs along the way)

Enjoying some sites downtown is one fun thing for our family to do. Being outside in the summer is one of the things we enjoy, and it keeps Violet's exposure to sick people, smoke etc to a minimum

 Staying positive :) :)

11 months and a lot of poop

Someone is 11 months young today!

 1 month shy of starting her 2nd year of life already!

Besides today being just one day closer to my youngest baby becoming a toddler, its also been a day of reckoning. This whole week has been an eye opening experience. Nothing exciting per say, no one incident, no "ah-ha" moment. Just a culmination of little things here and there that have me wrapping my mind around a new concept...Violet is coming into her own as she is reaching that big -0-1, and things are a changing!

 

As most of you know Ava is wildly brilliant, which is awesome, but can make for a very challenging situation on occasion. She is so smart that she is almost always pushing her limits,and testing our authority. So I was relieved when Violet appeared to be this shy, reserved, sweetheart of a baby. She is always smiling, and almost always happy. From a very early age she became vocal,almost as if making sure no one forgot she was in the room.

Just this past week, (maybe I missed a full moon?) Violet's personality has been shining through that sweet smile of hers. She is curious, determined and also smart as well. (Yes, this is the part where I boast about my baby girl) She put a tape in the VCR( yes we do still own one) and pressed play, she tries to put on any and EVERY pair of shoes she comes across, (yet she wont keep her own on to save her life) she knows when she picks up a phone to say hello and if there is something she wants she will throw a fit ( or the IRISH temper as we call it) until she can get to it. Best of all if she has something and Ava takes it, or if she wants something Ava has, she has no qualms about grabbing it from her. (Ok, so not exactly polite, but funny considering how Ava's had no problems grabbing from her most of her life)

 Playing nicely with her cousin

Ahh that sisterly love

The most challenging thing however, is that this stubborn side has also brought about a problem in terms of her daily medicine regimen. She does NOT want anything on a spoon, so giving her enzymes sprinkled onto applesauce, or anything is becoming impossible!


On average Violet will get between 15 and 24 enzymes per day. She has 3 before she eats anything with fat in it, (basically anything except Puffs) before she nurses and before she gets her PediaSure. If she didn't take these enzymes or still if she eats something very fatty/greasy the food/liquid would basically go right through her, because she is pancreatic insufficient. To save you the disgusting details, its basically like changing that newborn poop, still 11 months later. I would never go anywhere, without a diaper, and still carry a diaper bag with at least 2 outfits for her, even when we walk to get ice cream. Next time you have to change a poopy diaper, or a blow-out as we call them (half the time needing a wardrobe change)be thankful you aren't changing them 4-6 times a day! My point is not to gross you out, it is to educate you on the GI aspects of her disease. I am in no way a poop expert, just an expert on my kid, and I am still learning about normal CF things on a daily basis. The whole enzyme thing is a continually changing process, increasing as her weight increases, or decreasing if she ever becomes constipated or has pasty/chalky stools. It is a learning process, through trial and error, unfortunately. You'd think those would be words you'd never speak about your child, but when the pros outweigh the cons, sometimes you just have to go with your gut and trust the experts.

Yummy!!

Violet is always hungry...in fact she resembles a baby bird bobbing around anyone's lap who has food with her mouth wide open. Because of her CF and the importance of gaining weight she is on a high fat, high protein, high salt diet. All the things most of us try to stay away from, right? Now that she is done with baby food, and nursing less, I am looking for ideas of high fat/protein meals and snacks. Who'd think it'd be so hard to come up with these things? Again, such a problem to have :)

 

 Wagon rides are becoming a lot of fun for the girls, and a great work out for mommy!

 Blue eyed beauty



Kissing her sissy

My how you've grown

Violet 8 days old, Ava 23 months

Today Ava asked me if I went to high school or college or both.

 Now where she'd hear something like that, or if she even knows what she's talking about I'm not sure. She definitely never ceases to amaze me. I swear she is 2 going on 16, and it made me realize just how much she has grown in the the last year. We've all grown a lot. We've moved into a new house, in a new city, we've gotten life changing news, had some rather scary moments,and a lot of really exciting experiences. How come I am just recently noticing how much my first baby has grown?

This is Ava last year, such a baby face still

And now, so grown up!

She is 38 inches of girly girl, in fact an hour after I took this pic she took  this shirt off because it was blue and " not a girl shirt". She loves to play with Tinkerbell and all the fairies, the Disney princesses, My Little Ponies and anything to do with ballet. Most importantly, she is a GREAT big sister. When Violet cries, 8 times out of 10 Ava is the first one trying to comfort her. Those other 2 times, she could possibly be the reason for the crying, but that's not too often anymore.

 At first with as much time as I was spending nursing, feeding, changing Violet and doing her treatments, I often wondered if Ava felt neglected. This always happened to be the times she would need a drink, or have an accident, so I knew she was getting jealous.I soon found it helpful to put on a movie or a show for her during treatments, and she'd play her leap pad or read books to keep herself busy. It took a while but she learned Violet needed this special attention, and when Vi naps she gets special time with me as well. In my head it all makes sense, but to a 2, almost 3 year old, I doubt she really understands...could she? Or did she just give up on trying to get my attention during those moments?

 Her protector since Day 1

 Ava was so happy to see her little sissy after she was in the hospital for a week. We didn't take Ava up to see her for many reasons, but she asked about her everyday!

 She can't wait to wake her up in the morning, and strangely has never once complained if Vi wakes her up

All 3 girls, Spring 2012

Ava has learned to be a great big sister from her own big sister, and of course Kylie is an expert!

And of course someone else has changed a LOT since last September as well....

Our delicate flower, Violet Jane, less then 24 hours old

 Going home, 3 days old

 5 days old

 8 days old, 1st professional photo shoot

 3 months old

 4 months old

6 months old, sitting up like a champ

9 months old

Today, almost 11 months old

28 inches long, big foot ( size 4 shoes)always smiley, babbling away, learning to play peek-a-boo and clapping. She has been crawling like crazy, but hesitant to walk, yet makes a break for the stairs any chance she gets. She is the little sister, the youngest of the family and the light of all of our lives. As Ava would say " wittle Vi-Vi"

Make CF stand for Cure Found

Happy Friday friends! Thanks for coming back yet again, so we can share our story!

Today I'd like to post some miscellaneous info on what you can do to get involved. I have had a number of people ask how they can help, and what an individual can do to make a difference. While we always welcome donations, (which go straight to Cystic Fibrosis Foundation for researching a cure and treatment for all) it also warms our hearts to raise awareness. People ask us questions all the time. Your always taught in school that no question is a dumb question, so I try to keep an open mind.If you are anything like we were before our journey, when it comes to Cystic Fibrosis you know minimal facts, if anything at all. So we know people aren't trying to increase our worry, or challenge our way of doing things, it's simply a lack of knowledge and an increase in curiosity. If you'd like to learn more for your own peace of mind, or would like information to share, please check out the following websites. (These all have up to date, precise info from authentic, medical sources)

www.cff.org

www.cysticlife.org

www.cfvoice.com

www.cfliving.com

our Facebook page: www.facebook.com/VictoryForViolet

and our team website: www.cff.org/great_strides/victoryforviolet

I think two of the most common misconceptions are that people with CF can not be too sick because they look like normal people and that this is a childhood illness that they will " grow out of" Neither of these statements are true, but you would probably be alarmed at how many times I have heard both. I know people don't say these things to be malicious, they just don't know any better.

Snack time



Eating is so much work

Always eating

It is a fact that children with CF look normal, from the outside. The only problems they have in the appearance department are that they tend to be on the skinny side. ( What a problem to have right?) Violet is closely weighed/measured and charted each month and given a BMI percentage. Our doctors and nutritionist want her at the 50% or above. She is yet to hit it,but she's getting close! Last time she was up to 39%, and out of the red zone, into the yellow! It is a hard concept to wrap your head around, when you look at her chunky thighs and big belly. I guess comparing her to Ava she seems chunky, but at 10 months she wasn't quite 18lbs. Trying to beef her up, starting with all the foods Ive tried to avoid the last 10 years!

Ill keep it short, but I'd like to share an exert from a poem another mother of CF shared with me. It captured a lot of my emotions and helped me realize there are other people out there feeling the very same things I've felt.

"Some days...everythings ok. I can speak with a smile about other things that fill our lives and how a disease will not stop us from doing things we love. I can pretend I am not holding my breath everytime she coughs, trying not to look concerned. Some days it's not ok.Sometimes telling our story and reading other's makes me ache to the bone and causes tears that overflow and will not stop.Today I think about how healthy my child looks, and how quickly that could all change. I know that what we see or touch in our own lives can not be ingrained in us. That when it is not our child gasping for air or coughing until they vomit we can not understand. It is not our fight, and I will be thankful to those who do brave into our world. I will identify the immense selflessness it takes to walk into such pain and shed light. To take someone's grief and make it your own. To donate and walk and educate when it is not your own child. To willingly glimpse a reality that is not yours."
~ Bree  Alsman

Have an awesome weekend everyone!
 Blessings,
Ellissa