Friday, April 4, 2014

Happy 4th Angel Heart Birthday!

Four years ago today, 
on Easter Sunday April 4, 2010 
our sweet Miracle Mason was given a new beginning.
 A second chance at life. 

As the recipient of a very special donor heart he has been able to 
ride a scooter,
go to school,
be silly,
dress up,
play ball,
and much much more,
....... But, most of all he's been able to
just enjoy life!
And, that he does!
And that we get to do also!
Each and every day.....
enjoy life with our Miracle Mason!

Words can not properly express the joy and gratitude we have for Mason's donor family. If I knew who they were I'd personally love to hug them, thank them, and cry with them. I'd love for them to hear their child's heart still beating. I'd love for them to see Mason and how full of life he is! I'd love them to know how amazing we think they are for thinking to donate during a time that was most definitely heartbreaking for them. They have still chosen to remain anonymous, but maybe some day they will decide they want to let us know who they are. We will always hold a very special place in our hearts for Mason's sweet donor and family. We pray at this time of years and always that they may be comforted by our Savior's love as they miss their sweet child. 

We celebrated today in honor of Mason's donor with our annual sending off of balloons into the sky and a yummy little heart cake.....

We are also very grateful for all the nurses and doctors at Lucille Packard Children's Hospital (@Stanford) and at Primary Children's hospital! They have helped us every step of the way on our Miracle Mason heart journey!

We definitely:

April is also "Donate Life" Month 

Over 121,000 people in the United States are waiting for an organ transplant. Unfortunately, many of those people will die waiting because only about 46% of Americans are registered donors. Are you a registered donor yet? If you are not a registered donor, please consider signing up. You can find your state’s registry at . Organ donation saves lives. We all know we still have our Miracle Mason with us because of organ donation!!

Wednesday, April 2, 2014

March Flew By!

Here'a just a quick follow up after Mason's biopsy results and the yucky 'corona virus'. Mason felt crummy for about a week after staying the night at Primary's on March 20. Even though this virus is supposed to be a respiratory virus he definitely had more GI symptoms than anything else. I'm glad it was rather short lived and it didn't turn into pneumonia like it very well could have.

The transplant team in the mean time has come up with a plan for Mason's rejection. His DSA's (donor specific antibody blood work) came back and showed he definitely still has a lot of of the bad antibodies fighting against his beautiful heart. He will never have 0 DSA's because he has had quite a few since the beginning of his transplant, but we need to get the amount down so that his heart is happy and rejection free. (The good news is that his heart function remains great! ). The plan is to keep him on his moderately low dose of steroids, with no large pulse dose this time (hooray), but instead to go up to his max dose of Celcept. He has already been on his max dose of Prograf so that will stay the same. Doing this suppresses his immune system more put not as much as high doses of steroids.  Mason will also continue IVIg treatments now monthly. ( Which was actually approved by the insurance this time to treat his rejection.....great news!) Mason will be seen at transplant clinic 2x a month with a repeat biopsy in June. We go next week to clinic and the team said they may also add one more immune suppressant that he hasn't been before at that time.

March brought us Spring, some sunny days, and lots of wind! And of course, here in Utah we even got some rain and snow! But, on those sunny days it was so nice to get outside and play! Here's what we were up to in March.....

Fun at the park! Hooray for Spring!

Mason just could not wait any longer
to get out his police car and take it for a 
spin or even give his little cousin James
some driving lessons!

Baseball March Madness in sunny St George with the family.....
Braiden, cousin Peter, and their whole team played Great!
They took 3rd place in the tournament out of 47 teams!
Miracle Mason is still their #1 fan! Go Clutch!

Mason was sick our first day in St George so he and I stayed behind, but Mark and the kids went and hiked the Dixie Rock. They had fun and took some awesome pictures!

(From top to bottom: Kaitlin, Preston
cousin Peter, Braiden, and Ammon)

The day after we returned from St. George it was St. Patty's day. And, as always a sneaky little leprechaun came to visit our home while we were still sleeping. Lenny the Leprechaun snuck into our fridge and turned our milk green! That crazy fellow! But, he also left a bunch of green treats for everybody along with his messy glitter all over the kitchen table! (Do we resort to just about anything to tell our kids so they'll be good and get to bed on time??!!! I know I do!)

Ammon and Braiden received several awards at
March's cubscout pack meeting. Braiden earned his
Arrow of light and moved on to 11 year old scouts.
Good job boys!
(Thank goodness for their wonderful scout leaders!)

This was Mason's biopsy day on March 20th.... 
It was very unlike him, but he was sad and 
 whiny when we checked in at Primary's that day.
Poor little guy!
(I couldn't get my pictures to load on to the
blog when I posted with his biopsy results.)

With a little rest and extra TLC,
just one night in the hospital did the trick!

I'll take one night at the hospital any time
with my Miracle Mason!

Cheers to a healthy and happy Spring!!!