From 0 to 10 in a flash

So if your reading this then I guess you returned...

My next idea is to take you from Violet at 2 weeks old, (when our world came crashing down, or so we thought) to now, a very happy 10 and 1/2 month old. A lot has changed in this time, and our precious baby is now edging toward toddler hood (tear)

About a week after Violet's diagnosis, it happened....she got a cough. This wasn't like a normal cough kids get, it was a barky, sometimes lasted up to 2 minute cough. Ava had had a cold/cough for about 2 weeks, something she had brought home from daycare. Violet went to the clinic just to be checked out and we were instructed to call if the cough got worse, or stayed the same by the weekend. Saturday morning came, and Violet was now throwing up mucous so we had the on call doc paged, and a few hours later she was being admitted for respiratory distress. It just so happened to be the day before Ava's 2nd birthday, and her oh-so-special Tinkerbell party, that she had been asking about for days. Of course that would have to wait, besides she's 2 she doesn't know when "this weekend" really is, right???

 Is this what our lives were going to be like from now on? How could this all be happening already, she was a healthy, normal baby just last week. It turns out this was just a precautionary 6 day stay for her. A LONG 6 days for us, for me mostly because I had never been away from Ava for more then 1 night and I had to watch my newborn baby endure such cruel things like an IV and suctioning. And for Andy even more so because now he would work all day, get to spend an hour with Vi and then go home to be a full time dad to Ava every night. However, we all survived, and look I'm living to tell of it! Needless to say Ava was pulled out of daycare ASAP and luckily my parents have been able to be our sole babysitters while we worked and I went to school. Maybe that was just God testing us to make sure we were cut out to be parents of a child with "extra needs"??

Violet 3 weeks old in the hospital

even then she was still a happy girl

Since her hospitalization she has been pretty healthy, but it has been a LOT of work, and I do mean A LOT. We have been super, crazy, maybe even psychotically over protective of her. We have been lucky to have family members help, but there have been birthday parties, funerals, holidays and many other occasions one of us has missed to stay home with Vi. I'm sure there have been hurt feelings a long the way, but in our eyes we have to do what's right to keep our baby away from germs. In fact some friends and family hadn't met Violet yet until the Great Strides Walk in May

( a whole other posting of its own,in time)

 Last winter, November to March to be exact, we had a visiting nurse come monthly to check on her, and give her the RSV vaccine. I am thankful she was able to receive those shots, and consider them to have been a big help in protecting our angel through her first winter. Since then she has had some issues with her pooping, a couple fevers here and there, but still really no permanent or even temporary cough! (Fingers crossed)

Doing a breathing treatment

Violet's daily routine was a bit hard to adjust to, mostly because it was so different, and of course because it was so new to us. With Ava she woke up and Id feed her, dress her, and we'd start our day. With Violet, not so much....Every morning she gets a breathing treatment (Albuterol) and then CPT or Chest Physiotherapy (we have to pound on her chest, back and sides in 12 different spots for 2 mins each)

Each time she nurses or gets food she has to take enzymes with applesauce (or something acidic)

She also gets a multi vitamin and 1/8 tsp of table salt in the morning. Then we do another breathing treatment with CPT before bed, and if she's congested we can do the albuterol up to every 4 hours. Now it is just our daily routine, it just varies when I'm back in school and the girls are elsewhere. It really isn't as much as it looks like in writing...Well, ok it is, but like I've said it's just our normal. After talking to other CF moms, I see that we are lucky! Our daily routine is almost at the bare minimum level, hopefully how it will stay for many, many years!

Since the weather warmed up this Spring we have started to expose her to more people, and even some public places. As I've mentioned before she is ALWAYS happy, and she seems to really like seeing other kids. This summer we took her to Devil's Lake a few times, and we even joined the Perrysburg pool. One thing is for sure, Violet is a water bug!  Since diagnosis she has gone to the clinic monthly, if not more often for any sick visits. At our last visit in May she looked so great, they didn't want us back until the end of July. I like to call this the "kiss of death" because in early July she developed a cough...some days it was occasional, and some it became more frequent. So being a nervous nelly, I called the clinic, just to voice my concern. Well luckily I did and they brought her in to listen to her, weigh her and do a throat culture. I left feeling silly and almost sorry for wasting everyone's time, as the doc told us how she looked and sounded perfect. Better safe then sorry right?

A week later the clinic called us with some surprising news, she had cultured the feared pseudamonas!! It felt like day one all over again....How? Where? When? Why now? What next?

Turns out it is an organism found in soil, and water, so it could have been anywhere. The lake, the pool, the bath tub, the floor, her breathing treatment supplies. The sources are endless, and rather then try to figure out who or what to blame, once again we needed to be strong and move forward with an aggressive plan. So in comes 14 days of oral antibiotics, (or in other words 14 days of avoiding sunlight, which equals a boring 2 weeks for us all) and 28 days of an inhaled antibiotic ( or in other words another 15-20 mins of treatment time after her CPT) We had to come strong and hit it hard to eradicate it so it doesn't become chronic. Her 28 days are over, and yes, once again we all survived. So now....we.wait.and.wait.again.

She gets another culture on August 28, and then we wait 3-5 days to get the results. If it's positive she goes to the hospital to get IV antibiotics for 14 days. If it's negative, we CELEBRATE!!

So in short, these last 10 months have been crazy to say the least. We have all changed, as individuals and as a family unit. We have had lots of tears, hugs, kisses, bad days,breakdowns but we have had so many more good days, happy kids, good memories and learned so much a long the way. We have been fortunate to have great support from family and friends, and have been connected with others in  similar situations. You can share things with friends and family and talk until your blue in the face, but there's really nobody else that truly understands what your going through, then other parents of kids with CF. It seems like since Day 1, back when we had no clue about CF, our eyes have been opened to a whole new world. Now we have friends of friends who have a kid with CF, and a family connection to one of the nurses at our clinic, and the list goes on..

No matter what the circumstance is, nobody ever wants to hear that somethings wrong with their child.

Yes folks, we will all agree on this. It is hard to accept, and almost embarrassing, but WHY? This is simply a human response, I think, because no one wants to be judged, let alone have their innocent child judged by others. I have come to realize there is nothing to be embarrassed of. Our daughter, our beautiful, precious Violet Jane is nothing to be embarrassed of. We did nothing wrong, we did not cause her have CF, we've come to believe God chose us to be her parents. He must know that we are a lot stronger then we think we are, and are able to handle this special gift. We are blessed to have this child, I think those of you who have watched her grow up will agree, she is a  GIFT!

Our family

Happy Memorial Day

Getting so BIG

Always smiling

And I promise, it SERIOUSLY will not be this long everyday. I guess I have a lot more to say then I thought! Now that we are caught up to present day, I will keep it short and to the point :)