Thinking positive

Hi all our  "Violettes" out there!

 

Lovely manners right??

 

Just wanted to share some news with you. We have new insurance as of January 1, and it has already been a battle. Violet is due for her next Synagis shot Monday ( which will prevent her from getting the nasty RSV virus) and the lovely insurance is currently reviewing our third appeal. According to their doctor in charge, Cystic Fibrosis is not a chronic lung condition, therefore they do not see the expensive shot as necessary!



 Please send us positive thoughts and pray for Violet over the next few days. This is very scary news for us, even though we are super careful about exposing her to germs, nothing is 100%. We would be devastated to have another long hospital stay, so we are still hoping the insurance will make the right decision!





Lucky ones

As you know by now Violet gets two respiratory treatments everyday. These consist of using a nebulizer with Albuterol and then pounding her chest, back and sides with a hand held bonker.Sometimes doing Violet's treatments are a struggle. Andy and I have pretty much each assumed responsibility for one. I do every morning and he does every night treatment, while I put Ava to bed, do homework, etc. He knows he lucks out, (although he claims to have the " magic touch") that she she falls asleep every night without fail. The morning treatments, however, are a different story. What 15 month old sits still for longer then two minutes anyway? Then throw in 15 minutes of sitting with a mask on your face and another 24 minutes of being pounded, and that's 39 uncomfortable minutes...for both her and mommy.



Sometimes I can put on a movie for Ava and it'll keep Violet's attention as well, but other days, it is more like trying to catch a pig with butter on your hands. She wiggles, she cries, and arches her back and I feel bad.Of course I'm not hurting her, but I feel like she thinks I am. And then I wonder if this type of torture will scar her for life? I know, and one day she will know, that this is all for her own good. That this is all a preventative part of her therapy to keep her healthy.

Once in a while I tear up, and feel like all the stress, and anxiety of the moment might break me. I've even asked "why me?"  " Why us?"  "Why our baby?" Then I quickly snap out of it, and remind myself how lucky we are to have this baby. Yes, she is more high maintenance then most kids her age, and requires a little exra TLC. Most notably she is a tough little cookie, and someone very, very special.

(Daddy and I aren't the only ones that think so)

From the minor things that went wrong during her delivery, to being born with an uncommon disease, then finding out she is one of only 1200 people in the world that have one of her CF genes, and then hearing the news that there may be a drug available to help the symptoms of those with that certain gene! It seems like we are continually amazed at what happens next!

Peanut butter mouth

 

Ready to help mom!

 

Sporting our Victory for Violet shirts

 

 



****We hope that we can continue to be amazed in a good way!! ****