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 vertical...in 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 :)
Friday, June 8, 2012
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!
~Kate
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!
~Kate
Saturday, March 24, 2012
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~
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~
Wednesday, February 8, 2012
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
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
Saturday, January 21, 2012
Salty Toes
Hey everyone! As you can tell, this updating-the-blog-thing is proving to reveal just how unforgettable I can be! Sorry it's been about 2 weeks since my first post. Ava is doing very well! She hasn't thrown up since 12/30 (knock on wood everyone!!), which is an ENORMOUS achievement for her. In the past, we were guaranteed at least one full feeding of vomit per day, if not two. We've made a few changes to her plan of care so it's not exactly clear what is keeping her feedings down but we're just sticking to what's working so far!
One of the additions we made, was regularly seeing a chiropractor. On our first appt, he did what's called a nerve scan & it shows which nerves in the spine are under pressure. Surprisingly, her very top, very bottom & every vertebrae in the thoracic region, were highlighted in red. This meant that they were under a great deal of pressure, therefore he spends most of his treatment in those places. It'll be very interesting to see the follow up scan! In the first few weeks, she was being seen biweekly, now it's weekly due to her progress. It's amazing how calm she is during and after our appointments. Dr. Hart is amazing with her and it's fun to hear his "pet names" for her as his own daughter's name is Ava. Nicknames like Aves, Ava-bear & A-lady are a few! He's also working on her head molding (flat spot) every time we see him. He understands my extreme concern & hope of avoiding a helmet, so we really try hard to work on this every time as well as at home. Because of her g-tube, Ava never enjoyed tummy time and in conjunction with the "back to sleep" rules, her head inevitably became flat. Her pediatrician isn't concerned, but as a NICU nurse, we spend a great deal of time repositioning babies so flat spots don't become a major issue, therefore I am a bit over-the-top with the subject! :)
New adventures with Ava: This month, we started introducing fruits & meats to Ava. As a baby whose taken applesauce multiple times a day since she was a week old, she clearly loves the fruits. Meats...a different story! Both beef & ham have needed to be mixed with applesauce or pears to apparently become tolerable for her. Whatever...she's her father's daughter, that's for sure! :) Physically, she's able to sit with assistance and has mastered how to avoid falling flat on her face. Before she'd just fold in half & face-plant but now she catches herself in time! She's also learned a new tongue smacking sound...pretty funny to hear! Lastly, she's discovered that not only can her hands reach her feet, but her feet can now reach her mouth! Oh Lordy. Yet another source of ingestion of Yukon hair! Poor baby.
Enough babbling...here's a couple pics to enjoy! Talk again soon...I think ;)
~Kate
One of the additions we made, was regularly seeing a chiropractor. On our first appt, he did what's called a nerve scan & it shows which nerves in the spine are under pressure. Surprisingly, her very top, very bottom & every vertebrae in the thoracic region, were highlighted in red. This meant that they were under a great deal of pressure, therefore he spends most of his treatment in those places. It'll be very interesting to see the follow up scan! In the first few weeks, she was being seen biweekly, now it's weekly due to her progress. It's amazing how calm she is during and after our appointments. Dr. Hart is amazing with her and it's fun to hear his "pet names" for her as his own daughter's name is Ava. Nicknames like Aves, Ava-bear & A-lady are a few! He's also working on her head molding (flat spot) every time we see him. He understands my extreme concern & hope of avoiding a helmet, so we really try hard to work on this every time as well as at home. Because of her g-tube, Ava never enjoyed tummy time and in conjunction with the "back to sleep" rules, her head inevitably became flat. Her pediatrician isn't concerned, but as a NICU nurse, we spend a great deal of time repositioning babies so flat spots don't become a major issue, therefore I am a bit over-the-top with the subject! :)
New adventures with Ava: This month, we started introducing fruits & meats to Ava. As a baby whose taken applesauce multiple times a day since she was a week old, she clearly loves the fruits. Meats...a different story! Both beef & ham have needed to be mixed with applesauce or pears to apparently become tolerable for her. Whatever...she's her father's daughter, that's for sure! :) Physically, she's able to sit with assistance and has mastered how to avoid falling flat on her face. Before she'd just fold in half & face-plant but now she catches herself in time! She's also learned a new tongue smacking sound...pretty funny to hear! Lastly, she's discovered that not only can her hands reach her feet, but her feet can now reach her mouth! Oh Lordy. Yet another source of ingestion of Yukon hair! Poor baby.
Enough babbling...here's a couple pics to enjoy! Talk again soon...I think ;)
~Kate
Monday, January 9, 2012
Our little jumping bean!
Hey everyone! This is my first attempt at a blog, so be patient please! :) This week has brought many changes with miss Ava. On Saturday 1/7, she started babbling and not just squealing or squeaking to "talk"! Dj & I can't help but find ourselves fixed on her when she chats! It's the most amazing thing to see her trying to use her lips & tongue to create new sounds...and oh, the spit bubbles are never ending! Her development is so fun to watch evolve! In addition to her new speaking talents, she acquired a jumper from a family friend and good Lord, that kiddo goes nuts! She's such a happy girl from the moment she gets placed in the seat and she works her little legs to the point of exhaustion! Seriously, she's such a hard napper now! Maybe her fascination with this new toy will be short lived but for now, we're taking tons of pictures & video to capture these moments! Photos to come... Hope everyone had a pleasant New Years!
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