Our Easter Weekend

We had the best weekend!  Owen and I were so excited to head to the airport on Friday.  Nothing is better than being together, all five of us, under one roof.  It was the first time we were all together at the RMH and it was amazing not having to run back and forth to the hospital.  Logi was so happy to have us all together, but I think he loved the trundle bed the most.  "Jumpy Jumpy" he would jump off the bed over and over again.
We had nachos at the RMH for lunch before heading to the hospital to meet our social worker  and spend some time in pathology.  We were able to see Owen's heart, Aly's heart, and marvel at the miracle it is.  They had removed the coronary arteries to do research with them.. anything to help them learn and understand Coronary Disease better.  It's the number one reason for graft failure and I'd love for it to not be an issue in the future.  There is so little understanding of what actually causes it and there is no cure for it, besides re transplant.


We went out for dinner and then the boys got fresh haircuts.  Carson calls Logi's cut "lawnmower sheek." The Supercuts guy did the best he could I suppose.  :)  We grabbed dinner and headed back for a quiet evening on the patio.  Logi found his first potato bug.  I love the way he scrunches his toes, clasps his little hands together.. man I love this boy!
Daddy grabbed donuts for Easter breakfast while I got the kids up and moving.  There was an Easter egg hunt at the RMH and the kids got even more candy.  Owen found the lucky Golden egg and got to pick out a Build A Bear.  We followed that up with an Easter lunch of hammy sandwiches.



We had bought Owen's favorite ribs from Costco and slow cooked them in the oven a few hours before Daddy threw them on the grill.  The kids broke out the bubbles from their Easter baskets and the night was perfect!!  It was the best Easter and we are so grateful!!!
After very early labs on Monday, we headed out to a new breakfast joint.  Who doesn't love it when they give each child a bucket of toys to play with?!  Kam and I followed that up with Pedicures and she got her nails done for PROM.  Carson had some time with the boys and then we had to head to the airport.
This little guy stayed with us this time and will spend the next four weeks (or so) in Palo Alto.  Today was our first day with an active 2yr old and Owen says "this is not going to be too bad."  Logi is busy but so much fun.  I'm counting down the days until we get to go home and be together again.  More importantly, I'm praying that Owen continues to do as well as he has.  He is eating different foods, gaining weight without tube feeds, and hasn't complained of a single stomach ache (which was a daily event before transplant).  He feels great!!!
We miss Daddy and Sis already but Kam just facetimed and said "I feel kinda free!"  I'm so happy she gets a few weeks to just be a 17yr old, hang out with her friends and enjoy some time to herself.  

Biopsy #4

Biopsy number 4 was a success and we are officially done with weekly biopsies!  We got to the hospital at 8am and he went back around 10.  He was such a goof and always makes it a fun process.  He doesn't love going to the cath lab, but he sure makes the most of it.  On the way to the cath lab he was singing.. "24 24 minutes to go.. I'm gonna be sedated..."
He was done within the hour and I met him in the PACU.  He has woken up pretty fiesty the last two biopsies but after he eats, he is back to himself.  His pressures were slightly higher but in normal range and pretty perfect.  After discharge from the PACU, we headed up to the SSU (short stay unit) to get started on his 12 hour IVIG infusion.
We settled into our tiny isolation room for the night.  Dr Rosenthal and Nancy came down to go over his labs (they look great) and to adjust his meds a little.   Around 4am, we got his bloodwork done and we were outta there!  This was (hopefully) our last iVIG ever!!!!!
Nancy called this morning and his rejection score was 1A, which is pretty much zero rejection!!  SO we celebrated with more chicken.  They talked to Owen about the foods he puts in his body yesterday.  He has a new engine and now we have to fuel it properly.  Good analogy and I could tell him all day the foods he "should or shouldn't eat", but to have the doctors tell him really makes it click.  Today he is eating a better variety and is super excited to try new foods!!  I'm so happy!! :)
We slept in until about 9am since we stayed up until 4 in the morning.  We made our way to Costco for gas, ran a few errands and stopped at the hospital for prescriptions.  We visited with Gage and Cemaia and got to see Karla exit the building.  We are so grateful for where we are today! Tomorrow... we will pick up Carson and the kids at the airport first thing in the morning.  PURE JOY!!!

Passing Time

We have been relaxing and it's been great.  All the days have been meshing into one and time is just cruising along.  We have been chipping away at the steroids, but these cheeks are killing me.  So cute!
Owen has been ravenous but won't venture out of his "snack foods".  Snyder pretzels, KFC spicy wings and Dum Dums are pretty much all he will eat and he doesn't eat much.  I know it's totally not healthy, but I was so thrilled when he ate a couple french fries and a drink of a shake at The Melt this week.  I can't wait to get home and push healthy eating and different foods.  Today he did eat a few bites of lasagna and watermelon.  It's progress!  I guess when you spent 10 months in heart failure and have zero appetite, it takes a while to get back to eating.  I am grateful we have that gtube so I can load him up with the food he needs.
We went to the theater to see our first movie in about a year.  We met up with his friend Ephriam (he had his transplant in Feb) to see Boss Baby and they laughed pretty much the entire movie.  Who doesn't love the new recliners at the theaters?!  So spoiled!
Owen continues to feel amazing!  He is goofy, happy and has a new love of life.  I didn't realize how sick he was until I see him now.  There are no words for the gratitude I feel.   He is so full of joy!
Here we are and it's already Sunday!  Owen chilling in bed, windows open, the wind is blowing in the smell of pine trees from outside. Only a few more days until our family is together again.  This is the happy part of our story. Back home....... Logi loved the neighborhood Easter Egg hunt.  He named off the color of every egg and said "eeeggggEEE" a million times.  Kam has been busy with school, SAT prep, PROM dress shopping and getting ready for her dance concerts.  Carson is just working and keeping the bills paid.  Can't wait to see them in just a few days!!