Friday, June 8, 2012

Well, she's mobile! (sigh...)

Hey everyone!
To start, I'd like to recap the benefit and Great Strides Walk that both occurred in May.  What a success!  The generousity and devotion to our little family was inspiring.  In all, we raised over $5,000 for the CF Foundation and just over $9,000 for Ava's benefit fund.  Wow.  The comfort in knowing that if Ava were to become ill and we needed to stay home with her, that it was actually a possibility (financially), is very calming.  With the continued diligence of family & friends keeping healthy and bathing in sanitizer whenever they're near, has proven to be effective in preventing illness! THANK YOU!!!  At the benefit, we easily had a couple hundred people come out to support Ava's Army.  It still brings tears to my eyes when I think about the sincerity of concern for Ava.  Toasting to Ava's continued health was one of the most emotional parts of the evening for myself.  To see so many young supporters was also very cool.  I understand the venue and theme of the evening probably drew them near but as a result of attendance, they probably learned a lot about CF and that was one of our goals.  Awareness.  The Great Strides walk was an experience, we'll say.  Evidently, this walk has never fared well with the weather and it didn't disappoint that day.  Windy & rainy, we still had over 20 people come to support the Ava's Army team.  To see other groups and people with CF was reassuring.  Maybe that's the wrong word.  It was comforting to know that we weren't going through this alone and that things will be okay.  I do believe that Ava was the youngest CF'er there!   
Lots of new changes with Ava...most importantly, she's a lean, mean, crawling machine!  In a matter of days, she went from only scooting in reverse, to full speed forward motion!  We've been quickly made aware of the "Ava hazards" around the house in regards to babyproofing.  Her fascination with Yukon's food dish has him (& us) worried beyond words.  Often, he leaves food leftover and she's nearly taken a sample to try herself.  Thankfully, I've been able to catch her in the act.  Poor dog...if he doesn't eat when he's served, then he doesn't get to eat at his leisure!  Mobile baby + shedding Husky = bad combination.  We both knew this day would come but until she's vertical, it's daily vacuuming and constant lint-rolling! 
Speaking of the last day or two, Ava has been able to manage standing (as stiff as a board) completely on her own for almost 30 seconds!  Her pride and excitement, even after falling to her butt, is so fun to watch!  It's the small things that make raising a baby so entertaining.  With her increase in activity, comes an increased need for calories......and fat......and protein......and salt.  Geez.  I long for the day when she can tell me verbally that she's full or that she wants another pancake or that if I feed her one more jar of pureed chicken, she's going to barf!  Testing her volume limits have never been easy and I gravely fear a reflux rebound.  Oh well...soon enough she'll be chatting up a storm and I'll then wish for her quiet days to return!  :)
In August, she will be fitted for her chest physiotherapy vest (a lifejacket-looking vest that vibrates to help loosen lung secretions) and we're planning on ordering her the hot pink one!  At that time, she'll also have another lung function test to see how our preventative treatments have been working as well as a massive pile of bloodwork.  Poor Ava...Not to mention, at her pediatrician, she'll receive a couple routine shots.  Guess we'll have to get her a few extra birthday cakes for that month, to reward her for the difficult few weeks of tests and pokes.
I appreciate those who have been (trying to) keeping up with this blog.  I am obviously terrible at maintaining it and I always promise to do better.  Sorry!
~Kate :) 

Monday, April 23, 2012

Almost time for the benefit!

Hey there!  I can't believe May is just around the corner and Ava will soon be 9months!  Where did my snuggly little 6 pounder go???  She isn't mobile yet so I know I should treasure these days too...just the other day, I dreamt that she creeped up the stairs and met me in her room!  Maybe that's a sign that her sit-and-contently-play days are almost over!
This past week has been a busy one, complete with 4 days of doctor/specialist appointments and surgery to repair her old gtube site.  Whew.  Thankfully, each appointment went well and she tolerated her surgery great!  The procedure was done because after we had her gtube removed, the "tunnel" from where the tube was, wouldn't close therefore causing her stomach contents to leak.  The surgeon carved out this tunnel and stitched up the layers from inside-out.  The bandages remain in place for a couple weeks, so I won't be able to see Dr. Saltzman's handiwork until then.  I'm hoping to find a very small scar left behind!  I was elated to hear that she didn't need to be intubated for the procedure and we were only required to hang out in recovery until she woke up an hour later.  Like the rockstar she is, you wouldn't know by watching her, that she had a considerably major procedure only days ago! 
What she's up to now...Let's see, about 3 weeks ago, I caught her blurt out "dada" while I was voice recording a babble session she was having!  It's the cutest sound and gives me a little insight into what her tiny voice will sound like someday soon.  Of course, Dj's face lit up enormously when I played it back for him!  She continues to improve her length of tolerance for tummy time and rolls both front to back & back to front almost completely independently.  Crawling may not happen for Ava...she loves to be upright in her play-station thingy and truly hates being put on all fours in an attempt to crawl.  Oh well.  :)  Her head molding is slowly improving.  I remain more highly concerned about this than her chiropractor or pediatrician, which is a good sign.  She's started eating more baby food and one fewer bottle each day (thank God!), so hopefully weight gain will continue to improve!  Her favorite meal is the yogurt feeding! 
As I look to the month ahead, her benefit on the 2nd of May is rapidly approching.  I can't believe the amount of support we've already received and I just know that the night will bring many tears of disbelief in the generousity to come.  Ava will not be making an appearance that night due to the great potential for her to catch a germ or two.  This will be hard considering she's the star of the evening, but Dj & I know it's best for her.  Shout out to Grandma Mary who will be watching & taking great care of Miss Ava while we are all at the benefit.  THANK YOU!!!  The arragement of the event has been quite overwhelming and I can't imagine heading this up on our own.  Without family support, this likely wouldn't have happened!  Thank you to everyone who has been involved up to this point...there isn't any way for us to repay you!  Dj & I can't wait to see everybody who is able to attend the benefit!