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!!