Countdown to Toddlerhood

Good morning, happy Monday folks! This week marks something special for our family, Sunday our baby makes the oh-so-important transition from baby to toddler hood. Yep, our youngest little angel is turning one! While some days I am not quite sure how this happened so quickly, others it seems like an eternity, not since her birth but since our journey with Cystic Fibrosis began 2 weeks later.

Sept 23, 2011

Just a few hours old

 



Sept 16, 2012

51 weeks (357 days old)

I can barely see the similarities any more

 

So over the next week I want to do something a little less medical/gloomy and instead change our focus to some interesting topics( at least I think so, hopefully you'll concur) that come along with having babies,siblings, etc...

 Ava using chalk for everything but what it's meant for,

 while Violet quietly checks out the bubbles

And again, on the hands, face, pants..yep she's a mess...and Violet's getting bored

 

The 2nd kid shaft

 



I feel like Ava, our first child, grew up a lot slower, and the year was no where near as speedy gonzalezesque as Violet's first year. Maybe because she was the 1st, and I took time weekly, (at first daily) capturing every moment of that year? Perhaps I went a bit overboard ( save your judgements, I'm hoping at least a few of you will relate...maybe???) I kept a running journal of how every day went and how long she'd sleep, nurse, how many wet diapers etc....I was a first time mom.I had no clue what I was doing?!? I didn't work or go to school the first three months of Ava's life so I had nothing but time on my hands. I was living in a dream world ( apparently) I wrote down the first time she rolled half way over, the first complete roll over, documented every new food she tried, (waiting the suggested 3-4 days between each) every tooth that came in and any symptoms beforehand and of course she had her pictures taken..ALL the time. She was born in October, so she had newborn, Christmas, 3 month, 6 month, 9mo and 1 year. ( So far Violet has had newborn and Easter/6mo, but 1 year pics are this week)

Newborn pics, with her sisters

 

 6 days old

 Slept like a log during most of them

She fit in Daddy's hand



With Violet, our second child, I've realized somehow she got shafted. That's normal though, right? I've heard of moms not even keeping baby books on their second and subsequent, so I'm going to take extra credit on this one! ( no offense to any of my friends with 2+ kids who have not, it's just a generic statement...we moms know your busy)

I'm going to say it is of course because there was too much going on. I had Violet on Friday, came home from the hospital Sunday afternoon and had to be back in class Tuesday for a test, no lie!
 (On a sidenote, she was left with her daddy that first week,and all was well) I immediately was back in school for the first 7 months of her life. So between juggling school, a baby, a toddler and a doctor's appointment what seems like at least 2x a month between the 2 kids and myself, I had to leave my job! (I never pictured myself as a stay at home mom, but well talk about that more one day, I could go on for hours)

So as I looked over Vi's baby book this weekend I was quite amazed at how many blanks were filled in and how much info I was able to chronicle for my wee one. Then I kept flipping and realized other important things were missing. Of course while she was in the hospital I kept a running log of every nurse, doctor, respiratory therapist etc that came into her room, any med they gave her, all her vital signs and anything else important. I've been diligent about writing down any illness, symptoms she's had, meds given, temperatures taken and most importantly her measurements each month. However, that all goes in a binder behind her monthly sheets from the Nutritionist and her Medicine Reconciliation from the CF clinic. It was as I was flipping through her baby book I realized I have every medical/technical detail documented to the T...it was the more personal or personality type lines that are still blank. I have been so busy documenting and charting and such that I haven't done any of the fun stuff yet! I thought I'd share some of the things I found amusing...

Favorite food- any kind of cheese or meat or potato ( a true Irish girl)
Favorite color- Well duh, it's purple ( whether she knows it or not)
Favorite character- Minnie Mouse(that's who she points to in the doctor's office, so she must like her)
Favorite Activity- Doing anything and EVERYTHING my older sister's do!

While the big girls play....



She snuck over and is trying so hard to open the bubbles they were blowing for her

 Just pushing along...



and along some more

Nap time!!

I've vowed that my goal for her 2nd year of life is to stay on top of documenting. Not just her medical necessities, but the fun stuff too. This year will be filled with important stuff like her 1st official steps, putting more then one word together and starting to make friends! ( Right now play between her and other babies consists of grabbing each other's noses or toys or trying to kiss them) I've got my pen and my camera ready, bring on the fun!

 

Hope for the future!!

CVS/pharmacy Raises Millions for the Cystic Fibrosis Foundation
September 11, 2012

Jon Roberts, President of CVS Caremark Pharmacy Services (center), handed off a life-size check to the ALS Therapy Alliance and Cystic Fibrosis Foundation. Representing the CF Foundation are Joe O’Donnell, Milestones II chair, fifth from the left, and Brenda Fox, co-chair of the CVS Advancing Medical Research campaign, with her children Hannah and Lucas, who both have CF.

The Cystic Fibrosis Foundation recently took part in a new, and impressively successful, fundraising campaign thanks to CVS/pharmacy. The in-store fundraiser, Advancing Medical Research, ran from late May through the month of June and invited shoppers to donate $1 or $3 at the register in CVS/pharmacy locations nationwide and online at www.cvs.com/alscff.

CVS/pharmacy generously raised more than $5 million through the five-week campaign. The funds were equally shared by the two beneficiaries of the fundraiser: the Cystic Fibrosis Foundation and the ALS Therapy Alliance

That is awesome news! I got teary eyed just reading that. It's amazing to hear that so many generous people contributed 2.5million dollars in just 5 short weeks...and that was mostly donations of pocket change as they checked out at CVS!

 A year ago I probably would've skipped right over the article, because it just wouldn't have been of interest to me.Although if we had a CVS close by, I'll admit I'd probably donate to CF without even knowing what it was. I'm a softie, seems like everywhere you go now, the grocery store, movie theater, BMV, Arby's, even the dollar store, your asked to donate $1 to help with school supplies, or to the blind kids or homeless, etc. I always do, and I'm glad now that I have....Let's be real folks, I'm far from wealthy, but a $1 here and $2 there isn't going to change my life. What it will do is go to a cause that may change someone else's...Maybe even OUR daughter's one day! So next time someone asks if you'd like to make a dollar contribution to such and such, think of this face..and please DO! Once again we thank everyone who has been so generous and so supportive of our daughter and our family! We have been shocked by how many friends and family want to help, and even how people are coming up with ideas on their own!

She loves to take care of her baby!

She feeds her a bottle and even burps her!

 

She's so happy, such a blessing to us!

 

I do not want to come across as always trying to ask for donations or guilt people into giving us money. I would just simply like to share the CFF's motto, that "money buys science and science buys life"

Every dollar donated to Cystic Fibrosis Foundation goes to researching new meds and making that leap to find a cure for EVERYONE. As I've previously said the new drug Kalydeco is currently available for people age 6+ with the certain gene Violet has.( G551D) This gene is so rare that only 4% of the 30,000 people with CF have it.  This drug has been proven to not only eliminate symptoms, but it also improves lung functioning! How lucky are we??

 

Also exciting, the same drug company is in it's final stages of trials for a drug that will cure symptoms in people with 2 copies of the most common gene. (Delta F508) This gene is so common more then 50% of CF patients have 2 copies, while 40% have at least 1 copy. 

(Violet is fortunate to have Delta F508 and G551D)

 

So our next step is to try to keep Vi as healthy as possible and get her on the drug as soon as she is 6. ( unless is is approved for her at a younger age) There is currently talk that they are planning research with 2-6 year olds, but nothing has been set in stone, yet!

 

As always, we are staying positive and enjoying our girls!!!

 

 

 

 

 

 Violet can finally stand up and play in the sandbox. For months she would point and make noises when Ava would play in there. Now she can stand long enough without holding onto anything and use those hands to dig!

 

 

 That's my chair right there, ready to spring into action if anyone tries to eat, or throw the sand! This is very exciting for Violet because it involves getting dirty and mom doesn't usually let her do things like that. Sometimes you have to let kids be kids, right?

 

On a side note, lots of soap, water and hand sanitizer were used following this sand table experience!!!

 

Teasing Tuesday

Happy Tuesday everyone! Loving this 80 degree weather after the chilly weekend. Just when I was beginning to think summer was over, Mother Nature teases us with a few more warm days!

 

We had a great weekend, hope you did as well!

 Mom had a nice dinner out with her mom friends Friday, Daddy had some time with his friends Saturday, Ava stayed with Mimi and Papa Saturday night (for some extra spoiling, just what she needs) and then Sunday Ava and I went to a birthday party while Dad stayed home with Violet and then later he took Ava to the pet store to see the cats ( She adores them)

The things from Justice mom said NO to, Mimi took her back later to get...so rotten!!

 

 

 While Sissy's away little sis will play..with all her cool toys!

 

 

If you didn't notice, there was not much mention of Violet...with Cold/Flu season on it's way, it's back to the bubble, or hibernation, for little Vi.

 Trying to help Ava get the boogers out

 

 

Ava trying to suck them out herself

Bringing me a tissue to wipe her nose

 

 Sometimes it makes me sad leaving her home, and quite often we've had to split up our family to do things. We don't really give it a second thought, we just do it! I would love to (and look forward to the day when we will) all go places and experience things as a whole family. Whether it be a birthday party, the zoo, out to dinner, a vacation, anything. What keeps us motivated and helps us stay positive is that we know the " someday" WILL come! And then many, many more years of family time!

At the park, feeding ducks

 

Don't feel sad for this baby, we find creative and fun things to do. We go on lots of walks, are lucky to live in a city with TONS of parks, take stroller rides to get ice cream, A LOT!



 

 Kylie and Ava at one of the neighborhood parks
 

 

When it gets cooler out we will play indoors more, and these girls have more then enough to keep them busy! They are so blessed to have such good aunts, uncles and grandparents that love to spoil them! Besides having toys in the basement and some in the family room, they also have their own play room. ( way cooler then anything we had as kids)

 

 

All cleaned up....it only takes 2 girls about 20 minutes to destroy it everyday

And by the end of the day they are usually worn out!

 

 

 

 

 

 

 

So happy together!!

SO happy to always be together!!

 

 

By now everyone has heard our wonderful news! If not then I'll confirm, Violet no longer has Pseudomonas in her lungs! Meaning no further treatment, aka NO hospital stay! (For now) This is something she will always have to be cautious about, more importantly we as parents are now more aware and more cautious as a result of this event.

 

 This 49 day-loss of sleep-worry-filled-kept more in a bubble then normal-wait so long and intense it could kill ya-event.

This is a serious face

 

We are now more conscious about how to avoid any future run-ins with this nasty pseudomonas. No more wading in lakes with mucky bottoms, no backyard pools (unless the waters changed daily) staying disciplined about cleaning breathing treatment equipment and constant cleaning of toilets, bathroom floors, sinks and showers. Sounds like a lot, but it has already become routine!

Sleeping with mommy and daddy is so funny!!

So happy to wake up at her own house Weds a.m.

 

Neither of us got a chance to post yesterday because life got in the way. Andy had a busy day at work, and I had quite the busy day at home. Ava has been battling a runny nose, cough, feverish bug  since Monday morning, and as of yesterday she's getting a sore throat. ( I can tell because she said it hurts to laugh, and although I know she's in pain, her little raspy voice is so cute) So between Ava wanting to be held, A LOT, and trying to keep her semi- separated from Violet, I have had my hands full. However, I wouldn't change it for the world. I'll take a sick kid at home over a sick kid in the hospital any day! Even if it means having 1 kid vomit cottage cheese, the very minute I'm changing a poopy diaper and swatting at the baby's curious hand where it should not be!

Ava doing a breathing treatment to help with her congestion

 

Never a dull moment around here, I swear! If it's not one kid it's another.

 

 

Swinging at the park

 Coloring like her big sisters

 Riding the Dora Bus

Playing Peek-a-boo

 

With all that said, we have still been able to sneak in moments of fun and laughter, although the laughing hurts poor Ava. No words can express how grateful and elated we are to have our sweet baby girl home!

 

 

 

The FINAL Verdict is...

And the verdict is....... As you can see the suspense has been getting to all of us.

The loooooong holiday weekend came and went with some fun family times.  Saturday I took Kylie and Ava to the lake for some daddy time and mommy stayed home with Vivi.  On Labor Day Ellissa and I took Kylie and Ava to Columbus for their twin cousins' birthday party while Mimi Bonnie watched Violet (Thank you Mimi).  As usual we had a great time seeing everyone and letting Ava play with her cousins.  Kylie is growing up so fast and Ava is a wild woman. Always trying to steal the other kids toys.  I recall her saying "I take this giraffe home with me.  It's just one toy."  (Something Connor had just opened)

Finally, with minimal sleep Monday night Tuesday morning arrived.  This time I can't wait until 11am for the results.  I text Ellissa at 9:15am asking if there is a message or any phone calls from the clinic.  "No" she says "no news."  With that I decide to call myself.  They must be busy after holiday weekends because I waited for several minutes before I finally got through.  I gave the nurse my information and she says that the only thing on the electronic results are the same as what they said Friday.  The culture showed few staph with few lactose fermenting rods. " But no Pseudomonas" I said and she responded "It looks good but we have to let the doctors look at it before we say your in the clear."  "Great" I'm thinking, another day of waiting.  Ellissa waited until 11:30 and called the office.  The doctors still hadn't been able to view the results.  After a couple mental breakdowns the clinic called back at 5pm with the good news.  We are good to go the results looked good no hospital stay this time just a normal check up at the end of the month.  YEAAAAAAAAAAAAAAHH!!!

Violet jumping for joy

Ava doing her Victory dance

We dodged the bullet this time. Lets hope that everything stays clear for a long long time.  Thank you everyone for all of the kind words and thoughtful prayers! We appreciate everyone's concern!

Talk to all of you soon.

~Andy

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