Happy 5th Birthday Joshua!

After hearing Josh's diagnosis of  Hypoplastic Left Heart Syndrome during pregnancy, the doctor suggested termination. We were devastated when that same doctor showed us a very out-dated case study that indicated Joshua's chances of survival at age 5 were slim to none. Thankfully we were referred to the experts at UCSF who gave us tremendous hope, as well as 5 amazing years with our boy...and counting!!

This is such a special day for our family. We are full of so many emotions, but most of all - gratitude. We are so blessed that Joshua has done well these past 5 years. There have been many bumps in the road, which seems to be par for the course. But we are so thankful for the people we have around us; family, friends, doctors, nurses & fellow heart families to lean on.  We thank you all for your love and support.   

Now.... enjoy viewing the past 5 years, packed into 6 minutes:

Happy birthday sweet boy! We are so proud that you are our son, and we love you more than you could ever know!

Homework

Joshua had his very first homework assignment last week. He was really excited...for about 5 minutes. Then the novelty wore off.

This was Abby's homework tonight:

Sweet Abby.

lucky boy...

Joshua is a lucky boy...he's got the two best big sisters ever! They may not always get along perfectly, but when it comes down to it, they sure do love each other more than anything!
Oh and he just got his first MedAlert bracelet...he seems to like it! I'm pretty sure he'll wear it seeing as he's worn his Darth Vader watch every day since Christmas. :)

First day of school...

We are already into our second week of school, but I wanted to post a few pictures of Joshua's first day.  The first day was great! He made a new buddy right away and they apparently had a lot to talk about. He referred to him as his "Star Wars buddy"...it wasn't until a few days later that we learned his real name. :)

Abby is in 3rd grade this year and Callie is a big 1st grader this year! It's nice knowing that they have each other on campus.

Josh really likes his new teacher, she's very sweet. The class is quite full, and is very boy heavy, so she's got her hands full, but she has a lot of experience and seems like a perfect teacher for Josh.

Three hours of school, five days a week is going to take a little getting used to, I think. Josh comes home tired every day, but so far things have gone pretty smoothly.  It's probably hardest for Sam to get used to since he's stuck with just me for 15 hours a week!!! I'm not as much fun as his siblings I guess, I can tell he's missing them.

Well that's all for now.  In a few weeks we'll celebrate his 5th birthday...how is he already 5 years old?
Where has the time gone? Ugh, it all goes by way too fast!

So long summer...

It's unimaginable that my little boy will wake up tomorrow morning and go to his first day of school! Where did the time go?
It feels like just yesterday I got that fateful phone call from Kaiser telling me I must urgently go back in and have a second ultrasound because there appeared to be a problem with our baby's heart.
And yet somehow time has passed. A lot of time.  Josh will be 5 years old next month.
When my girls started Kindergarten, I was a bit emotional. I felt like as I walked away from them on their first day of school - leaving them all alone in their classrooms, I was walking away from my baby and I knew that when I came to pick them up a few hours later, they would have joined the ranks of a "kid". Just makes me a little sad.
Today as I sat with Josh in his orientation, I started thinking about all he's been through in his life. I found myself fighting back tears. There sat my sweet eager little boy, listening intently to his new teacher, not a care in the world, so excited to learn, play and make new friends and I knew that for the first time, tomorrow,  I'd have to leave his side.
He went to preschool last year, however he only went 5 hours a week and his teacher was a dear family friend. This 5 days a week stuff is going to be hard for me. I have been with him through everything, always holding his hand, making sure he's safe and comfortable and now it's time to let go.
I know must sound dramatic, but it's going to be a hard "Goodbye, little buddy!" tomorrow morning.
But to be a little positive, I am very excited that he's going to learn and grow in school. There was never a friendlier, happier kid than Josh, so I know he's going to love making new friends. I think it's going to be a wonderful experience for him.
We are extremely fortunate in that he will be on campus with one of my longest "heart mom" friends. I know that she will keep an eye on my little guy & I am tremendously relieved knowing she's there with him.
We went to the campus earlier in the week to check out the classrooms and Josh was so darn excited he giggled the whole time because he was so excited to be there. As we walked away he said, "Mom, this was even funner than I expected!" I'm expecting tomorrow will be the same for him...I just hope I can be as brave as him!

Summer lovin'

Why have I been so bad about blogging lately? It must be summer! We've tried to stay busy with day trips and even a couple over nighters...just enough for the kids to feel like we are really living it up! We haven't done anything extravagant, just hiking & exploring the world around us, visiting different lakes & rivers etc. Trying to make good memories!

Besides keeping us all entertained, Jon has spent the past several months working hard to establish his non-profit organization, limb-loss.org. He is just getting the website rolling, after months of meeting with lawyers, accountants & jumping through hoops one must jump through to operate a non-profit. His goal (in a nutshell) is to provide education to new amputees & be a resource through the entire process. There is so much more to it...please check it out! He is so passionate about it & I love that it's finally beginning to really move forward! You can also check it out on Facebook.
Jon isn't one to open up frequently about his experience with Josh, but you can read here how it was the driving force behind the non-profit. I'm proud of him.:)
Check it out & let us know what you think!

Take me out to the ball game

 Last week our good friends gave us tickets to watch a baseball game...we were pretty excited to take the boys to their first real game! They LOVED it!! We're gonna have to do it again because it was the perfect night out with our little guys! :)

Thanks again Mellissa & Sal, we owe you!

back to normal...

Today we had a follow up visit with Dr. R. Joshua loves him & really looks forward to these appointments, which is great. There were some scheduling miscommunication which lead to 4.5 hours at the office, but we walked away with some great news!

Dr. R said that Joshua's heart function looks great. He said it looks as good as it did last year post-op! We are so incredibly thrilled to hear that he has improved, and that he's actually doing quite well. Just months ago we were given very devastating news, and here we are a few months down the road with a much healthier little guy. 

I can't tell you how thankful we are for the prayers that have been said on our behalf. We definitely had moments of deep sadness during that time, but felt the love and support of so many of you. It feels so good to be on this side of that hurdle. Seems as though Josh will continue to face many hurdles in his life, but for now, we plan to live it up this summer! Lots of swimming, biking, camping & beach days are in order!!!

A Wish in the making - Day 1

Well, I suppose it's time to share our adventures! Joshua's Wish trip was simply amazing! On Thursday morning at 5am we anxiously awaited the limo that would drive us to San Francisco for our flight to Orlando.

The limo was so much fun & we felt so fancy arriving in such style. The kids had never flown on an airplane so the flight was a highly anticipated part of our experience.

And the flight did not disappoint...the kids loved it! We flew on Virgin Airlines & they treated us so well...we even met the captain!

Before we knew it we had our rental car & we were headed to our Disney Resort...

We were tired at the end of the day, but we couldn't pass up the pool, so...

 We suited up and we swam the night away! Not a bad way to start out an amazing week!  Just look at this smile:

It says it all!

Day 2 - A Wish come true

So Friday, our first day at the park, was Joshua's big day (funny thing is - they were all big days)! It was the day he was to attend the Jedi Training Academy, as well as meet and greet several different actors and characters.  We spent the day with a VIP tour guide, Debbie, who got us where we needed to be & kept us entertained!

The day started out beautifully & we were all so excited for the events of the day! And then the rain started!!!

Which didn't dampen our spirits actually because we knew we were in for an amazing day. The nice thing about Florida is that it's warm when it rains, however, it was a little chilly when we were drenched & went inside to ice cold A/C!

But really, we didn't even care...a little (or a lot in this case) of rain wasn't gonna ruin our day!

Unfortunately, the Jedi Training was cancelled for the day, but instead we got to spend extra time with the characters & actors. They were all so incredibly nice & took so much time with us. They gave Josh gifts & they called him by his first name.  His little face just lit up & he thoroughly enjoyed meeting everyone.

We also got to see a few shows through out the first day...our favorite was the Storm Trooper show. They are seriously hilarious....I haven't laughed that hard in a very long time!

But the meet & greets weren't over yet! We got to visit "the dark side"....which turned out to be down right terrifying, even for the worlds biggest Star Wars fan! These guys NEVER go out of character, that's important to note. So Darth Maul for instance, it's his job to scare the pants off of people, not shake hands and share pleasantries.

Did I mention Darth Vader is seriously like 7' 8"??? And he's a total mouth breather.

By now, surely you've noticed Josh is nowhere to be found in any of these pictures. Well that would be thanks to Darth Maul!! As soon as Josh laid eyes on him in the distance he was FREAKED!! We tried desperately to convince him that he should go meet him, but he was NOT about to get near him. I have no idea why.

Perhaps it was the way he stood staring Josh down for 5 straight minutes?? I was laughing so hard. Darth Maul knew this was Josh's wish, so he made it memorable. SO FUNNY!
The people at Disney came up with an ingenious plan to get a picture of Josh with Darth Maul...

So we got our picture, but not without a little creativity! As we walked away, Darth Maul continued staring at Josh & pointed at him as we exited the area. I am quite certain Joshua will never forget a second of it!

The lead Star Wars guy at Disney was with us at this point and asked Josh if there was anyone else he really wanted to meet. Wiping the last of his tears away he said, "Luke Skywalker."
We were then escorted to the other side of the park to a holding area right next to the meet & greet for Princess Leia, R2D2 & C3PO!!! And wouldn't you know it, this guy snuck up behind us to say hello:

This was the absolute highlight of our already spectacular day! Luke was so nice to Josh & spent the longest time talking with him.  I cried. I shed a lot of happy tears on the trip....especially during this part of the experience.

The kids had a blast meeting all of the characters, and I have to say, Sam & Leia sure hit it off.

He's still talking about his Leia.  

After all that we were ready to eat! Debbie reserved us a spot at this indoor Drive-In movie diner:

It was both delicious and fun! We also rode some rides and had some other adventures:

Finally we said goodbye to our new friend Debbie. We were sad to say bye because she was so helpful to us, but she gave us a ton of tips to help us on the rest of our trip! She even gave me her cell # and told me to call her any time with any questions during our stay. 

What a wonderful day it turned out to be...and we still had 4 more days of fun!!!