Ava's cousin Torie visits from Ohio!

...and madness ensues! Not really, but Miss Ava and Greg sure have LOVED having their cousin around the last few days! :) The days leading up to Tories arrival all I heard from G was "When does Torie get here mom? How many days are we hanging out with Torie, mom? What kind of music does Torie like, mom? Do you think Torie will want to come over and go swimming with us, mom? Is she going on a plane all by herself mom? When do I get to do that, mom?(never)" Etc, etc etc. You get the idea. They were both just a tad excited.


So we took the cousins bowling at Crestview(which was totally dead, btw. Maybe people think it already closed?). I think Ava won the first game, and G won the second(I have to add that Miss Ava got a STRIKE in that second game, though! ). Torie shouldn't feel bad tho, my kids are notorious and ruthless cheaters!!! ;) So if there was a way, they found it.






Next up was the State Fair. We didn't get to take Ava last year because I don't think there was a single day that worked into our schedule that the temperature wasn't over 105. Insane. And miss heart diva doesn't tolerate that kind of heat well at all.

Anyways though, after we visited the dinosaur exhibit and ate nasty(delicious) fried junk and once the midway opened Torie and Greg took their lil wristbands and went on the big kiddo rides while hubby and I took Ava to the kid park area and to ride a pony. So cute. But I missed getting lots of photos of all the kids together. :(











We loved hanging out with Miss Torie though, hopefully we can get out to Ohio soon for a visit ourselves!

Ava left her (unmended) heart in San Francisco

This is a super late post, I am trying to play catchup with the blog though so bear with me. ;)

A few weeks ago Greg's brother Jeff visited us from Washington, along with his beautiful girlfriend, Suzy. We had a fun few days of activities. Including a Rivercat's game as well as a day trip to SF. Which is the city little Miss Ava was calling home the first few weeks of her life. The place where she underwent that amazing first, and second, repair on her itty bitty tiny little heart which allowed her to be here with us today in all her ballet-obsessed, MO! screamin', "pince chamin" dreamin,clothing-aversion sassy glory! ;)

We started the day at the wharf, of course. The kiddos loved watching the sea lions and the boys had fun in the sports shop. Then we headed over to the California Academy of Sciences and Aquarium. LOVED it. Though we missed the planetarium showings(just another reason to visit again, though ;), the rain forest area was AMAZING. All the exhibits were great, actually. Totally recommend it to my CA locals. :)








After a few hours in the museum we all went over to the Golden Gate, parked on one side and walked the bridge. SUPER pretty views but holy moly it was windy and FREEZING. Need to dress better for that one next time for sure. A lightweight cardigan was so not cutting it. :/





Very fun day though and it definitely beats looking out at the Golden Gate(fog permitting) from Ava's favorite room in UCSF. Wind and all. :)

Document Everything

Hi all, So these photos are on here a little late. They are from the photos we had taken by the amazingly talented Megan Squires at . She did such a fabulous job with Ava that this mama had a terrible time picking my favorites and narrowing it down.

Funny story. Megan is actually someone I knew from High School. I saw a little ad for her website on facebook one day, and fell in LOVE with her work. I actually had no idea who it was, until I read her about me bio and saw her photo. Then it clicked and I was like, "Oh I KNOW her!" And what I could remember of her, she was always super sweet and kind. So that along with the gorgeous and vibrant images I was staring at convinced me enough that I wanted her to capture Ava's next birthday and heart anniversary photos. SO glad I did! She was so unbelievably personable, patient and really had a knack for getting Ava to feel relaxed and comfortable. Most of the people who read this blog and know Ava well know that as of late(re:since all those hospitalizations for caths), she has a serious case of "stranger danger" going on. Which is not all that bad, except for the serious anxiety it brings with it. Eventually she warms up to everyone, though. No "eventually" was needed on this day, though. Ava loved "Mey-an" and actually still talks about her! It's very cute.

Anyhow. It was a very special day for us, the actual four year to the day anniversary of the day Miss Ava had her first life saving repair to her perfectly imperfect heart. She was only seven days old, not even 7 pounds, she was our tiny precious perfect little girl and to go from not knowing if you would ever be bringing your daughter home to watching her run around playing, dancing and full of smiles was something so special, something I will cherish forever. And I have AMAZING photographs to document it. Oh, and did I mention the stunning slide show complete with video and beautiful music she put together for us also?! Yeah. Thank you, Megan. Words cannot express the wonderful joy and precious memories you have captured for my family and I. :)

Camp Taylor, 2010.

We were finally able to attend Camp Taylor! Lots of confusion, lost registration and then an opening at a camp that was around the time of Ava's Cath and a possible third OHS prevented us from attending last year, and I was super heartbroken about it. BUT, it all worked out this year and we even got to attend the same camp as Miss Ava's heart and digeorge bff Madison and my digeorge/heart parent ROCK, Michelle. As well as the rest of the Stone clan.



Other heart family friends have shared their stories and pictures of their experiences at Camp Taylor family camp, and was VERY excited but didn't know exactly what to expect since the "camp" we were attending was actually at the Hilton in Santa Clara. Usually it is outdoors in a more camp-like setting and they have activities such as kayaking, archery, relay races, obstacle courses and stuff. Of course, the two G's were hoping for some roller coaster action at Great America(the hotel was literally right next to the theme park), annnd they got their wish!

We arrived at the Hotel at about 3pm, check in time. Our mentor came and greeted us immediately and then we separated and got situated in our room. Took a look at the itinerary...WOAH. They keep you busy with activities from 8am(thank YOU Hilton for having Starbucks available in the lobby), to 9-10pm. The first day there we had our family photo taken, then went to do our first craft, making a family banner. I usually get sort of all perfectionist when it comes to this sort of thing, but decided to just let the kids do their thing and have a good time with it, for once. ;P And they did a most excellent job, too! They must get it from their mama.

Then we went to another room for MORE arts and crafts time. Ava had fun with this, using scissors and glue and all the messy craft elements. G, not so much, but he was an excellent sport and played along very well. Then it was dinner time. Each meal was catered and served buffet-style. During dinner time, each family introduced themselves and their families and shared the diagnosis of their heart camper. It is still so surreal to be surrounded in a room full of families who have gone through so much of what we have. When Ava was first diagnosed I absolutely felt SO alone and isolated, I truly never would of imagined there were so many others out there going through the same thing. After dinner each night they usually let families and/or campers go up on stage and share songs, talents, etc. Super cute.

The next day was GREAT AMERICA time! Greg and I were trying to remember when the last time we had been there was, and I think we concluded that it hasn't been since before children. So we were all excited to spend the day together at the park and meet later for lunch with the group. The boys went off on a few roller coasters while Ava and I checked out the rest of the park. Not too many rides for her, as she isn't tall enough yet, but we found a few. :) Plus, they now have a Snoopy Zone and Ava is ALL about "puppies!". The weather was luckily really nice, which was great for Ava, and for the rest of us who were wearing BLACK heavy cotton shirts(camp shirts). After lunch we all gathered for a group photo, then it was just the heart campers and siblings time. WOW. Another one of those moments, so proud and in awe of every single one of those kids. They were seriously the happiest, friendliest, most energetic bunch I have come across! So inspirational, and they don't even know it.

On the final day the kids got to make build a bears, and many families shared testimonials of their time at Camp Taylor and what it has meant for them. So moving(Tiff, fyi, the tear count was up to about 10 at this point ;P). At the very end each family was presented with amazing little gifts to remember their time at camp by, a scrapbook and mouse pad made by the mentors, an iron on transfer using the family photo taken upon arrival, and each heart child received a shadow heart buddy. It's a special doll that has the heart scar down it's chest. Ava fell in love instantly and the doll, along with the bear she made, haven't left her side yet!


Our family feels so thankful and privileged that we were able to attend such a unique and special event. I know this will come to be a tradition and will be such a positive influence on Miss Ava's life and journey. It was so neat to be in the room at mealtime or out at the pool or at the park with all of the families and see these children running around, playing, showing off their beautiful scars to each other and just being kids. It is such a blessing to have them here and healthy enough to attend these types of events, and the people behind Camp Taylor who make it all possible are amazing! Thank you for letting our family be a part of it. <3

amazing milestones

What a week it has been! To catch up everyone, Miss Ava successfully completed her first year of Preschool! I am so very proud of her, and so thankful to her fabulous teachers who helped her accomplish and conquer yet another little milestone. We lucked out with these three fantastic ladies! :) Luckily for us, they will also be teaching the extended year summer school program Miss Ava is enrolled in. So glad they are running the program this year, plus Miss Ava having the same friendly faces will definitely help her apprehension she will undoubtedly have after a couple of weeks off.








Another huge huge HUGE milestone Miss Ava reached quite some time ago but was just made official two days ago, the Mic-Key is OUT and her stoma closed all on it's own within 24 hours! Ava has been eating on her own since fall of 2009. Getting her to take her medicine orally was the biggest hurdle, but she does it so well now. She is 100% off that nasty pediasure, eats usually anything we give her, and takes a daily multivitamin and just half a baby aspirin for meds. WOW! From the little failure to thrive baby with paralyzed vocal cords who aspirated and couldn't handle her own secretions that was 100% reliant on similac pm 60/40 and later pediasure for nutrition, to a healthy 4 year old who can't go over 45 minutes without needing a snack, this mama is SO beaming with pride!

I of course took before and after photos of Miss Ava's belly, but I think I am going to keep those to myself for now out of respect for little missy. :)

Four and Fabulous

Yesterday was Miss Ava's official birthday, as well as her party with lots of family and dear friends there ready to celebrate four amazing years with Ava. The day was seriously GORGEOUS, and aside from the nasty wind ruining all my pretty decorations, the party was perfect! Ava was her usual quiet and cautious self, which is always how she gets in large groups of people. She was also super tired as we stayed up quite late the night before attending a Rivercat's game with Brother's little league team(Rivercats lost, btw. But the kiddos loved the fireworks!). But all in all it was a wonderful day, not to mention Miss Ava made out like a bandit! She now has EIGHT pairs of sandals!! That's more shoes than there are days in the week! And if I sound like I have shoe envy, it's because I DO!!! ;) Miss Ava also scored a big girl two wheeler bike, a scooter, a complete Ariel beach ensemble, an entire summer wardrobe, just too much to list.

We missed those who couldn't make it, and appreciate all those who did! If you guys took pictures, please send them to me asap! :)


















Happy Birthday my precious daughter. You have accomplished so much, overcome more than many others will have to face in a lifetime, and did it ALL with a smile on your face! Mommy, Daddy and Brother love you so much and are so thankful for that day you blessed us with your presence. You have accomplished so much just in the last year...You are about to finish your first year of preschool, amazing! You are talking so much more, and working very hard in class and in speech therapy! Growing stronger every day! You started using the big girl potty and barely had an accident since! You were very brave this year for the two catheterizations you had. You started eating 100% orally and now ask for a meal/snack every 20minutes! You have made lots of new friends, had your first soccer class, first trip to the ocean, first trip to DISNEYLAND! Four years, wow!