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! 

Crazy Dayz

I am publically apologizing for my lack of blogging.   I love it so much and life is just crazy right now.  Like ridiculous, can't catch a break kind of crazy. 

I spent the whole of last week meeting with people from the school, talking to nursing staff, and getting paperwork together for Owen to attend school.. who knew it was so much work?!  I finally have all my forms to fax to Stanford to have filled out and faxed back.. then we have a final IEP meeting and hopefully he will get a few weeks in of Kindergarten before he will be a Kinder graduate!! 

Owen went to the park with Daddy almost every night this week because it's been sweltering in the day... 99 degrees on Friday.  Guess who was so brave and went down the slide all by himself for the first time ever?  He climbed up and slid down over and over again!  We were so proud, but no one was as proud as Owen himself.  It's so great to watch his confidence soar!  He still gets intimidated on some play structures, but is getting brave!

Friday night was so hot and Kam had AllStar pics for dance.  Owen and I sat in the airconditioned car and watched the girls smile and sweat.  Love this pretty girl and it may sound totally selfish, but I can't wait to have her home all summer with us!!  Not before she finishes out the last of her Junior High years as a rockstar! 

Saturday, we had another Heart Mom Brunch and it was a great time, as always.  I love these girls so much. 

Sunday we watched a little Captain America and it was SO good!!  You have to go see it!  Owen was in superhero heaven and grabbed my arm every so often when someone was caught off guard in the movie. 

We are all totally excited for this little gem of a movie coming out in May!  Owen loves to take pictures in front of movie theatre posters.  Kam.. not so much. :)

Bring on another week.  I am exhausted from last week.. Kam was sick, I spent most of the week on the phone or filing papers, our taxes are finally done and I feel not so overwhelmed this week.  We kickstarted our week with LABS!! Oh yes.. so fun.  Owen did say.. "I liked this lab better.. they used the smaller butterfly needle and it didn't hurt as bad."  We stopped at Circle K for a $.79 polar pop and then at the school to pick up more forms. 

This week... plan our next trip to Stanford in May for IVIG... not feeling like having another PCH visit anytime soon.  Owen had a nasty reaction last time to the brand of IVIG they used... we'll just avoid it all and jump on a plane for his 12 hour infusion.  We have to get all the forms into the school with instructions to stay hydrated and any other restrictions that I can't think of right now.

How is your week??

Conventions, Competitions and Bumble Bee Ranch

We had another busy, fun filled weekend in the desert.  Friday night was a late night dance competition for Kam and Owen insisted on joining us...he loves watching the girls dance.  We arrived home and were in bed by 11pm.  Saturday was an early morning wake up call to pack the car, pick up Gigi and head back up north for the girl's dance convention/competition weekend.  NRG is one of my favorite conventions the girls go to.  We checked into the resort, got the girls to their ballrooms and headed up to Bumble Bee Ranch for our favorite Hopekids activity of the year!

Owen took an offroad jeep tour, did a craft, flew a balloon kite and loved archery!  He has some mad "bown and arrow" skills.

After a bbq lunch, he wanted a little "face" painting on his arms and then we had to leave and get back to the resort.  My sister was holding down the fort at the resort and got us all checked into our rooms with the girls. 

We had an hour break between conventions and competitions.  Gigi had written some "break up" songs "for a friend" and had us laughing so hard.  We laughed, the littles tortured each other, the big girls got their hair and makeup done and our hotel room was a hot mess.  There were lots of fun memories made for sure.

We walked Gi and Kam down for their first dances and these two wanted their picture taken in front of the red carpet sign.... Owen was nudging Liv out of his photo op. 

Later, he shared the spotlight with Kam. I was so bummed I left my good camera in our hotel room.

Between Kam's dances, we ran over the resort pools and they had a little café poolside.  We ordered some dinner for all and it was freezing cold (for us.) 

Gi was done dancing earlier than Kam, but we had one more late night photo after Kam's last dance.  The girls crashed early and hard.  We were all exhausted.

Owen and Daddy relaxed in our room all morning and the girls were back at conventions by 9am. We checked out of room after the girls' lunch break and headed to the pool.  It was a perfect 88 degrees and we had lunch poolside.  So much fun.

When the girl's were done dancing, they changed into their suits and we let them swim for just a little bit. 

It was hot and the kids were exhausted.   We loaded up the car and headed home.

Two out of the three were passed out within five minutes.  The girls had a great weekend, learned a ton from their dance teachers and did so great at competition.  Owen had fun with Daddy and we all relaxed just a little bit when we could.  While conventions are super fun...I'm glad that we get a little break until Nationals in Vegas! :)

It was a great weekend.  Thanks to NRG, SAS and HopeKids!

Biospy Results

We are home.  What a whirlwind trip it was and we are glad we don't have to go back for three months!  Owen's biopsy went great... good pressures and biopsy results came back as 1A, mild (almost non existent) rejection.  YAY!  Owen had a quick 2 hour recovery and we were outta there.

Since we were both starving, we headed to California Pizza Kitchen (Owen's choice) for Linner (lunch/dinner).  It was pouring rain outside, so we may have overstayed our welcome until the storm passed.

Owen was looking forward to BINGO night at the RMH... his favorite night ever!!  There weren't many kids playing so he got his first pick of the prizes and we spent a good hour or so building his Lego's last night. 

This morning, we had an early morning check out of the RMH.. which consists of cleaning our room and getting everything packed up in the car.  We made it to cardiology clinic at the hospital by 9:30am. We had a great visit, all of Owen's labs looks great and we talked about some med changes.  Nothing too exciting.  We had a good chat about school and Dr H was very direct in his opinions.  He said not to let Owen back... let him have life experiences... let him fail... let him experience disappointments...let him have fun.  We have a meeting on Friday to discuss starting school.. AT school!!  EEk.

After cardiology, we had several hours to kill before heading to the airport.  We played with the train at the hospital.

We went back to the RMH to pay our bill and to play outside a little.

Then we headed to the mall to eat some lunch at Max's.  Owen had me draw a treasure map on the back of his menu and we walked around the mall looking for his treasure.  This was his favorite part of the trip!

We made it to the airport just in time to catch our plane home.  Owen was a great travel buddy and had everyone entertained, as always.  Our flight attendant was cracking jokes while doing his safety talk before the flight and Owen was laughing so hard.  He thought she was HILARIOUS!  Anyway, it was a successful trip and we got good news all around.  We go back to PCH in a few weeks for another IVIG, followed by a visit to Stanford early July for another biopsy and IVIG.  School, swimming lessons and Karate are a go .. life is good!!

Biopsy Time

Happy April! Yesterday was a day of travel from Phoenix to Palo Alto and we made it!  It was such a fun day with my favorite little travel buddy.  We were offered a room at the Ronald McDonald house  and Owen was thrilled!!  He had such a fabulous time last night.. it's one of his favorite places to visit!  We settled in last night with a movie on the laptop and Sprinkles cupcakes.

The airline lost our stroller, then found it in the rain somewhere...

This morning we woke up bright and early to make it to the hospital by 7:30am.  This is a creepy selfie that Owen insisted on taking,  He was so excited this morning... like SO excited!  As we walked into the hospital everyone was saying how adorable he was in his batman hoodie and dancing in the rain.  He turns to me and says .. "I've got lots of fans ... sorry you don't have any mom." 

The cath team was running behind schedule for another case, so we waited... and waited... and waited.  I finally just took him back to the cath lab and he drifted off into dreamworld with ease.  No versed.  No nerves.  Just puts the mask on and talks until his eyes roll back in his head.  Such a brave guy!

Thanks for the prayers.. there will be no April Fools Jokes today.  We are hoping for zero rejection and great results from this biopsy.  Today kicks off Organ Donation month and here is proof of the importance of organ donation!!