A Heart of Gold -- Organ Donation

April is Organ Donation Awareness month and today is the last day of the month.  Owen is alive today because of his Angel who gave her heart to my sweet boy.  Not a single day goes by when I don't think about and pray for her family.  I can only imagine the heartache and loss they feel every moment of their lives.  Because of their choice to say yes to organ donation, Owen is not only stronger than ever, he is thriving!  My little boy, that was born with a broken heart, is whole.

My sister bought me these figurines for Christmas and they are perfect.  Two amazing children sharing one incredible heart.  A heart of gold. 

Organ donation is a topic we often discuss when it relates to us, as adults.  We rarely discuss the possibility of organ donation when it comes to our children.  It's not natural.  Our children will outlive us, it will be their decision, that's the way it's supposed to be.  Before Owen, it would never had crossed my mind.  That's why I am sharing today.

Many of Owen's heart buddies have passed away while waiting for their hearts.  Many are currently waiting.  Many have passed away due to complications with their broken hearts, but have donated other viable organs. We grieve the loss of the donor families as we celebrate the gift of life when they get 'the call'.  Life is precious and so delicate.  If you haven't registered to become an organ donor.. please do.  Have the discussion with your family and make your wishes known.  You can register to be an organ donor HERE.

We are so grateful for Owen's new heart and for the family that said YES!  Owen thanks you!  He knows he was given superhero powers to endure the many labs, infusions and biopsies required to keep his new heart healthy.  We pray that his gift will last him a long time and that he never forgets that he was given a heart of gold from an Angel. 

Making Progress.. Owen Style

Lately I have been taking things slower and just soaking in life.  Each day is such a blessing and this guy makes living fun!  Owen has always done things HIS way and does nothing 'traditionally'.  This week breakfast of choice has been spicy buffalo wings.. so spicy that his nose is running and he drinks several glasses of icy milk to drown the sting.  He follows this up with a few snacks.. peanut shells (always the shell), pretzels, and beef jerky (which I call chew since he spits it in the trash). 

We have been taking advantage of our last few weeks of "Spring" in the desert before we are hit with triple digit heat.  Owen has finally found a love of the park and has me drive around looking for a  new one each day.  I think he just picks the park with the most kids.. smart boy.  He still gets super nervous on the play structures, but his is getting braver each day.  It took him about 30 minutes to decide this tunnel was 'safe enough'. 

It was the bottom tunnel in this pic.  Forget about the two higher levels.. he wasn't having it.  Maybe tomorrow. :)  I will say that we all get super excited to see his tennis shoes filled with sand, the bath tub has a ring of dirt in it at night and he is just like a little boy should be!

He has so much energy...after a long day of school (still homebound), therapies, and running errands... he still wants to play games and run around.  It's not until about 9pm that he finally decides he's tired and comes in for cuddles. 

Feeding therapy has been a LONG time coming but he is finally swallowing his food!!  It only took six years of daily work and he's figuring it out.  He eats all day, but super healthy and very low calorie.  His favorites right now are anything in bbq sauce, spaghetti sauce (not really noodles), buffalo chicken wings, any soups, seafood and anything salty.  He still only eats a few bites and says he is "stuffed" but we are making progress.  He still gets the majority of his calories via gtube and I make some pretty amazing blended foods for him so at least I know he's getting optimal nutrition as his recovery continues. I have been cutting back a little each day on his tube feeds and encouraging him to eat more orally. Someday we will pull the tube.. someday.

We just signed this guy up for swim lessons and I need to narrow down a karate studio.  He has been begging to learn 'Kung Fu' and has been using C's foam roller from the chiropractor as his personal punching bag. 

Can you believe the difference in this kid since transplant?  I am so grateful each day and love watching him make progress.  He's reading a ton, doing fantastic in math, and hopefully will be starting Kindergarten in a week or so!! YAY!! 

Happy Easter

We have had such a relaxing Easter weekend together. Three days away from school, work and responsibility has been just what the doctor ordered. Seriously... most of us have a nasty throat congestion thing that is just crummy. Owen of course, has it the worst, but handles it the best. Nothing gets him down.   Saturday night we did the traditional dying of the eggs... glitter, crayons, stickers and die.. messy and fun!

I had a dream the eve of Easter that Kam was getting ready for her Senior Prom.  I woke up a hot mess and begged her to pretend that the Easter Bunny coming to visit her was the greatest thing ever.  Why do they grow up so fast?!  Our bunny leaves a note and sends the kids on a treasure hunt around the house to find their baskets.  It made me so proud that Owen could read the entire letter and all the clues this year!!

I was so happy that the Easter Bunny kept things small this year.  Neither one of them ate a lick of candy at all today.. it's just not their thing.

After a day of complete rest, we headed to my parent's house to celebrate Easter.  My dad cooked bbq ribs for dinner.. per Owen's request.. and the kids ran around for three hours.  Inside, outside, hiding in closets.. I love watching them play.

Our family Easter photo which I will crop and edit when I have a minute of spare time.  Time is hard to come by around here. 

I hope you all had a wonderful Easter.  No fancy dresses or suits and ties for us this year.. but it was perfect just the same.  Hoping for a week where we are all fully back to health!