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!

Happy Birthday Ava! Preschool-style

I am SO super blessed and lucky that I am able to do things such as spend the day in my daughter's class and be a very small part of her mini celebration with her classmates and teachers. Which is exactly what I did today!!! Ava knew she was going to be celebrating her birthday today in class and although she seemed a tad bit apprehensive(not all that unusual for Ava) she was also really really excited! Most of that excitement undoubtedly had to do with the sugary super cute cupcakes that were involved. :) She woke up this morning ready to go! She picked out her outfit(luckily she changed her mind from the VERY full pettiskirt to a more sensible, but equally cute, outfit ;), brushed her teeth, combed her hair and was ready to GO!


I had lots of fun sitting in on class today. Just to see Ava in school and interacting is a milestone I hold near and dear to my heart. She has come so far, and I don't see signs of her slowing down anytime quick! ;) Thanks to the fabulous teacher team Miss Ava has on her side, I have heard so many horror stories of IEP's and everything/one that goes with them. But you have all been so wonderful and I have seen the tremendous progress little miss has made this year, both socially, physically and speech-wise. Thank you! :)

I miss me.

It's been almost four years since our lives forever changed. And I can't help but to reflect on how different things were four years ago today.

I feel like I was an entirely different person. I was optimistic, I was carefree(hindsight), I was naive, I was hopeful, I was joyous, I was elated, I was YOUNG. I knew almost next to nada about how sick babies could be(hindsight again). I especialy knew nothing about CHD. Not to be a total wet towel, but most days when I wake up not many of those descriptions match my mood or thoughts.

I do not think I am depressed, at all. And that Jen you see or hear that is ALWAYS putting a spin on the negative and trying her darndest to turn it into a beautiful picture isn't faking it. It just takes more work nowadays. Sometimes a LOT more work. And I think I am just exhausting myself more than anything. But I don't know how to slow down and just truly relax like I used to. How can you when you are constantly trying to remember appointments, medicines, helping others understand what your daughter is saying, explaining this and that, am I spending enough quality time with each child, am I making sure my marriage is happy, is Ava eating enough/gaining enough weight, etc etc ETC.

Hmm, a work in progress, for sure!

My Mommy's Day 2010

I guess first of all, HI. Total slacker with the blog again. I have been living in the cave that most of us crawl into right before one of our child's birthdays, knee deep in party planning. Luckily the colors are bright and everything is pretty. :)

I hope all my mommy friends had a fabulous Mother's Day with their lovies! I sure did! Hubby works the late shift, from 8pm-6am, so he surprised me with my favorite latte on his way home, as well as donuts for the kiddos so that I wouldn't have to cook...MMM. Oh wait, am I supposed to admit I happily allowed my children to eat donuts for breakfast? Oooh, and that I even had one myself?! And that it was really, really delicious?!

Moving on, so the kiddos and I hung out all morning, they both showed me what they made for me in class, both made me cry cause I'm absolutely, 100%, one of "those" mom's. G offered to make me toast(hey that's huge, I am pretty sure when I met GBo at his tender age of 21 he was burning water still), kept sneaking up and giving me hugs and asking if I was having a day as good as I deserved. SO SWEET. We played, etc, and then started packing up for our mini trip to the coast! Once hubby woke we were off! It took awhile to get there, guess a lot of people like to travel on Mother's Day, who knew, but it was SO worth it once we reached our destination! We went to a little beach I heard about from my brother Daren called McClures. BEAUTIFUL! The weather in town was a bit rainy and overcast, but on the beach it was nothing but blue skies and mid 60's temps. Perfecto! It was Ava's first time visiting the coast, and she was SOOO super excited the whole time. She's been to the lake before, things like that. So when we told her where we were going she was on the lookout for "wa-er(water)" the WHOLE ride down. Once she spotted it she literally shrieked so loud it hurt my head and got SUPER excited. There was a long trail down and from the place where we had to park you couldn't necessarily see the ocean all that well, at least the beachy part. So we started our trek down the path and once that beach came into view Ava again shrieked and started dancing, she even threw in a pirouette. ;)







The kids spent the day exploring, climbing, digging, running from the tide, and I loved every second of it! We finally made it home around 11pm and had some VERY sleepy, but very happy kiddos on our hands. Of course, the next morning was Monday and we all had to rise and shine to get ready for school, but the long day before was totally worth it!










Thank you husband for making my Mommy's Day fantastic and very memorable. Thank you Gregory and Ava for letting me be your Mommy, if everyone could be blessed with two kiddos like you two, I think the world would be a much happier & and fun place to live. :)

Nothing in particular...

So today we spent about 3 hours(including travel time) at a Genetics appointment for Miss Ava. She honestly hasn't been since an infant, for multiple reasons, mainly because insurance failed to see a reason for it. Ha. Ha. So anyhow, the appointment went very well. It was held at the M.I.N.D. institute, and the two ladies we saw today were fantastic! So kind and informative and really interacted with Ava quite well. Ava even liked one of them. ;) They said there wasn't much more they could offer Ava, we don't have any behavioral issues as of yet, although there are definitely moments, days, where I seriously question that ;), we already have speech and preschool going, as well as some OT through preschool. They do have a support group for 22q, and they gave me all sorts of information on other services, studies, etc that they do. They are also going to pass our info along to Dr. Tony Simon, and try to get Ava into his next study, so we are super excited for that. More on that as it comes along...


Today Ava also had class spring photos, and she picked out her new favorite dress(yes it changes daily) to wear with her sparkly sandals her Grammy picked up for her. Ava was running around the house practicing her pose ALL morning, it was the cutest thing ever. Then as soon as we picked her up from class she saw us and instantly busted out her photo pose, hilarious! We got home and took a little stroll around the block before lunch since the weather lately is amazing! I am still trying to learn this lens on my camera so I took it along. Well, anytime Ava saw me go for the camera she would stop what she was doing and start posing, how do you NOT laugh, and capture that!?







And in other, all thought and time-consuming news, I am in full swing of the planning of Miss Ava's party. If you have any crafty or baking skills, CALL ME PRONTO! I am so not above a family or friend discount/handout. ;) For family and friends, I will have invites in the mail the beginning of May. But her party falls on her birthday this year, so NO excuses!

xox

Hoppy Easter!

Wow! Easter turned out to be quite an eventful day, and almost nothing happened as planned. For starters, it was windy, cold and wet outside all day. Boo! Usually we are mildly complaining of the heat, so it's typical that as soon as we don't have said heat we are complaining of the cold! ;P

We had plans to spend Easter with my family and Greg's family, and our friend's the Weaver's were going to come over for an egg hunt and dinner with their two kiddos. Easter morning we ate breakfast together, the kids found their baskets and tore into those, the Grandparents show up and almost instantly Greg starts complaining of a headache and he is shivering, despite being dressed in layers, a robe and a blanket off the couch. Poor guy! I take his temp and it is normal. He ends up falling asleep on the couch and about 20minutes later wakes up with a beat red face. I check his temp again and it is up to 101.6. Poor kiddo had just gotten over a random ear infection over a week ago, so once he starts saying he is dizzy we think it possibly came back. Since we have friends with small kiddos coming over we decide to get him checked out asap at the med center so we know what is going on. There they rule out an ear infection, and strep. The doctor made an "educated guess" that he has a throat infection, prescribes more antibiotics and sends him on his way. The poor kid slept the rest of the day and didn't even want to eat any yummy Easter goodies! :(

Our friends decided to stay home and not risk catching anything, don't blame them one bit. The rain really started up and we didn't get to do an egg hunt outside! :( Ava had a good time though with her family and we are planning on doing a delayed hunt later this week for the kiddos, which will be super fun now that the rain has subsided and the ground is dry!

Here are a few photos, I even got one of G before he started feeling terrible...