G-tube-less!

Yep, as suspected, I'm not ANY better at keeping up with the blog.  Sorry folks!
Fantastic news though!  Ava had her bi-annual lung function test (results were fabulous!) and that same day, we had her G-tube removed!!!  She had it placed the day of her big surgery after she was born, in case she wouldn't eat orally well.  We ended up using the tube for a few days but haven't since the day we came home from Amplatz.  Her doctors were being cautious with the "sick season" upon us, worried that if she caught an illness, that she wouldn't eat.  Well, duh.  Who would eat normally when they don't feel well.  This urked us because she should be allowed to skip a day or two (like everyone else) if she wasn't feeling well.  We entertained the doctor's concerns and once her results came back from her lung test, we told them we wanted the tube out before we left the clinic that day.  Ask repeatedly and you shall receive, right?...tube was removed! 
Later that day, Ava began to really enjoying tummy time!  She usually only lasted about 5 minutes PER DAY & now she tolerates up to 30 minutes a day & has already started beginning to roll around (never happened before)!  I've been so worried about her missing these crucial developmental milestones...tummy time, rolling, crawling...so I'm elated that now she can actually get to it! 
Her dietician told us to start increasing the amount of baby food she eats in a day and to be sure to "fatten" it up so I've begun adding coconut oil to her meats, veggies & fruits.  That substance has got to be equivalent to Crisco!  One tablespoon = 60% of your daily saturated fat needs!  Holy buckets.  In six days, she managed to gain 9 ounces, which is huge for her!  FYI: Ava will forever require a diet high in calories, fat, protein & salt to ensure adequate weight gains.  This of course, until her "miracle pill" is developed and she no longer needs any meds some day!  Fingers crossed! 
With the summer season quickly approching, our household is gearing up for the outdoors.  No more cooped up in the house, avoiding the winter germs!  We have plans to hit up the pool as frequently as able, purchase a bike trailer for her to ride in on family bike rides, going on daily walks with Yukon & we can't wait for the annual family summer trip!  This year we're headed to a resort instead of camping...this is a much better idea.  Can't imagine doing neb therapies in a tent with a 10 month old! 
Be sure to visit our website link for the May 2nd flair-raiser to raise funds for the upcoming CF walk on May 20th!  A silent auction, flairtending show & raffle prizes are all in the works for that night! 
~The Beyers~

Sitting, sweet potatoes & lots of smiles!

As I've already apologized before, I'm sorry for the posting delays.  With facebook these days, I keep remembering to update that site and not this one!  I hope to get better at this...maybe a belated New Year's resolution?  :) 
So much has gone on in the Beyer household...all GOOD things!  Ava is now puke-free for well over a month so hooray for that!  She's started sitting nearly on her own, just occasionally needs a reminder not to fall over.  She's also started baby foods!  So far, chicken + gravy is her least favorite meal.  Surprisingly, most of the "meats" she'll take only when a fruit is mixed with it.  Makes my stomach churn but whatever works, Ava!  At our most recent CF appt, the docs say that we should now add table salt and fully loaded butter to any baby food she takes.  What a lucky baby, eh?!  Sure makes those sweet potatoes go down a little easier (which she likes for the moment)! 
Still no teeth...just loads of drool and chewing on everything and anything that comes near her mouth!  Poor little girl. 
About mid-January, miss Ava acquired some new accessories to her ears and she looks SO cute with her new sparkly earrings!  Of course, she handled them like a champ and has yet to notice that they're still in her ears.  Such a dolly!
Up & coming things: will most likely get her G.tube removed around Easter!  Her first lung function test is the middle of March (to get an "inside look" at how her lungs are doing).  Mark your calendars!!!  MAY 2ND, 2012!!!  We will be throwing a fantastic shindig at The Doghouse Bar in Maplewood...a benefit/event to help raise $ for our CF Great Strides walk on May 20th & for Ava's ongoing medical needs.  More info with details to come...keep posted to the avasarmy.org website for updated information as the dates draw near! 
Thanks for reading and fingers crossed that it won't be another month before my next post! :)
~Kate