Hospital Life

Owen had a wonderful birthday weekend and can't believe this is his last year in the single digits.  We layed low most of last week because Owen has been dealing with nausea.  His poor tummy has not been happy.

We did venture out to Bingo with the Stanford baseball team Wednesday night and Owen was the only patient there for a good portion of the night.  Seems like most of the patients are on Isolation right now.  Owen picked a Star Wars baton weapon which he loves!

We have lots of light sabers in here and he loves to fight the nurses, especially nurse Jay.

His birthday was quiet and just perfect.  I stayed up late decorating his room.  We opened presents with family on face time. 

We cranked up the music and spent most the day building Legos together.  The nurses ordered him a birthday cake but he didn't eat it.  His poor tummy. 

We decorated for Valentines and had a few visitors which is always fun.  Nothing extravagant, no big party, and he had the best time.

Goa Todd and Gma Monica flew up from AZ for a weekend visit.  We played a lot of bumper cars and Gpa bought him a remote control tarantula.  He had so much fun and it was sad to say goodbye.

Back home....

Carson gave Logan a much overdue haircut and now he looks way older!

He has been busy playing at the park and is learning how to throw down tantrums.  Love this little munch so much!!!

Larissa sent me this photo this week and I thought to myself "whose house are they at?"  Seriously.. that is our house and I didn't even recognize my home.  

Kam had been so busy and never complains.  She is applying for summer internships, getting letters of recommendations together, setting up volunteering and studying for SATs.  She choreographed a dance yesterday and was so proud of herself for nailing it today.  She takes care of Logi and helps out around the house.  She is amazing!!!

Carson is busy with work and doing all the single dad stuff.  He is doing a great job!  Couldn't ask for a better partner on this journey.  Thanks to everyone for helping out with Logan and feeding my fam.  Love you all!

Hospital living is hard.  There are heart moms surrounding me here and so much support. Brenda.. Thank you for all the home cooked meals.  Chris and Bob.. Thanks for the dinner tonight.  The love is real and I feel so lucky to have you all in our lives.

 

Happy 9th Birthday Owen!

This little Superhero is celebrating his 9th BIRTHDAY today!!

Owen is the bravest boy!  He is hilarious and has a witty comeback for everything.  His laugh is contagious and his smile lights up a room.  He is wise well beyond his 9 years and loves to be around people.  He loves Legos, video games, and watching his favorite YouTube channels.  In school his favorites are Science, Geography, Art and Writing stories. He has the biggest heart and wants others to be happy.  He loves to stay up super late and sleep in late.  He still love to snuggle and will chat my ear off for hours.  He has a very sensitive side, but puts on a tough exterior.  Our hearts are so full of love for this little guy.

Owen..

Your last year has been such a tough one.  It has been physically and emotionally draining on you.  You never give up hope and you keep on pushing through the tough times.  You find joy in the small things and celebrate the big ones.  I am so lucky to be your mom and you never stop teaching me to be a better person.  Daddy, Bo and Logi love you so much and adore everything about you.  I would do anything to keep you in my arms forever.  You're the best!  :)   I hope you always remember how brave you are and what you have overcome as it has molded you into the incredible boy you are today!  Happy Birthday Buddy!  Love you to the moon and back a million times.

Here's a recap of the past 9 years!

Born with half a heart... blessed with a fighting spirit.  You came into this world ready for anything!

His first year was intense full of unknowns.  Two open heart surgeries, 3 cardiac catherizations, transplant evaluations, oxygen, 24/7 NG tube feeds, therapy 3x a week...

At two he was butt scooting around the house, manueving around his oxygen tubing.  We ditched his NG tube and had a Gtube surgically placed.  Owen started being treated at Stanford for heart failure and we had a couple more caths this year.  He was talking up a storm and such a stubborn little spitfire!

By three, we finally had a walking boy!  He would say the silliest things all the time and we knew he was trouble. We told him to bring it!  Owen had his third open heart surgery at Stanford to repair his Tricuspid Valve, another couple cardiac caths and we continued to talk transplant. Owen wrapped up his year with his Make A Wish trip to Disneyworld!

By four, we knew Owen was having a tough time keeping up, satted in the low 60s and was listed for a heart transplant.  He had a great year with many ups and downs, but such a tough guy!!  He continued to work hard with PT, OT and Speech therapy weekly and always impressed us.

Owen's fifth year has been the year of change.  He received his heart transplant in July and has thrived ever since!!!  When we look back at the first part of his fifth year and compare to the last half, we are so grateful for this amazing gift of life he has been given. He had started Kindergarten with a homebound teacher, learned to jump on the tramp, and improved in every area of development.  It's like he is a new boy!

Six has been the year of transformation!!  Owen has physically, emotionally, cognitively.. every area has changed for the better.  He is growing like a weed (finally)...he started 1st grade..he is running (almost), jumping on the trampoline (getting air)..wicked smart in math.. his writing has improved so much.. he is reading (when he has to).   He is happy, smart, funny, and such a delight to be around!  He no longer has hulk rage and his teacher says he is the most obedient, kind boy.  Even with a bajillion biopsies and trips to Stanford, you always have such a positive attitude.

Owen's 7th year started off a little rocky.  I know your biggest goals were to make it to 2nd grade and to finally ditch your Gtube for good.  You have done amazing with second grade at home and the gtube will have to stay a bit longer.

Your eighth year has been a challenging one... a year of survival. Your failing heart has taken it's toll, but you keep on pushing through.  You've spent 192 days in the hospital this past year and you still find ways to enjoy it.  Third grade has been challenging and you have been patient and eager to learn.  You've made friends with other patients, teachers, nurses and doctors.  We are SO proud of you!

Here's to NINE amazing years!!  As always.. thank you to Aly's family for giving us the past 3 1/2 years with our boy... we celebrate this day with you.

Week 34 ... but who's counting

It has been a very eventful week with lots of fun.  Owen made it to school 3 of the 4 days this week!  We did a ton of walking, enjoyed visitors and played hard.

In school they made marble coasters for science and painted Lady Liberty for art.

We walk a lot and sometimes these little legs can't keep up.  So I push Owen and pull the pole behind me.. Good workout.

We played perfection and light bright for OT to help strengthen fine motor skills and work on visual processing.

We broke out the Slime Factory chemistry set from Christmas and made some gross slimy eggs. 

Liz came for a visit.  I can't believe it's been six months since Sebastian went to be with Jesus.  We had a lot of laughs and caught up.  We did dinner at Max's and grabbed drinking chocolate afterwards.  We had a good laugh at the $3.50 shot glass of hot chocolate.

My mom and Gigi flew in on Friday and it has been such a fun weekend!  Owen LOVES Gigi so much.  They have played Minecraft, Legos and he has enjoyed opening up all the presents she bought for his bday coming up.  

Gigi and Owen wanted to be left alone to hang out and play Xbox so my mom and I went out to dinner.  Amazing food and I have enough leftovers for like two more dinners.

Gigi loves exploring the hospital and made friends at the RMH.  She stayed up until almost midnight last night hanging out with Owen's teenage classmates that live at the RMH.

Back home...  Gpa Todd and Gma Monica took the grandkids to an Escape The Room experience.  It was their Christmas gift this year...experiences over gifts for the win.  They loved it!  Kam said it was a viral outbreak and they had to search the room for clues to find the cure.  Can't wait to do this on a date night.

They had dinner at Sauce afterwards.  I feel so lucky to call this group family!

Logi has been having fun!  I wish he'd stop growing up though.  Carson cut his hair today and he was not amused.  He loves his YouTube videos on the "pad" and going outside to play.  He is such a good eater lately too.  He was helping Larissa make chocolate chip cookies and was eating the chocolate chips as fast as she was putting them in.  Oh how I love this little guy!  FaceTime is my life saver.

Missing my babies and my hubs.  Absence absolutely makes the heart grow fonder.  Only a few weeks and I'll have them wrapped in my arms!  

I'm pretty sure Owen is the only patient on this entire unit that doesn't have an isolation tag on their door.  Everyone has something and we are being super diligent in staying healthy!  Lots and lots of hand washing, bleaching and mask wearing.  I've never been so healthy over the winter and I'm living in a hospital.

Prayers and Love.