Wednesday, September 10, 2014

September Emotions

      This time of year always fills my heart with many emotions. Besides the excitement of having those last fun moments of the summer, and the kiddos all going back to school, there's the sadness and amazement of my kiddos growing up too fast. I also feel gratitude, joy, and a true confirmation that it is HOPE that keeps us alive! 
      
        5 years ago on September 3, 2009 we were given the devastating news that Mason was not eligible for the heart transplant he would need to survive, and there was nothing more that could be done for him. We were told his sick heart would probably only last a few more months (click here to read the post about that day). Needless to say, I was heart broken! I felt like my world had shattered! It was Labor Day a few days after this devastating news and it has been a family tradition to spend a day or two up in Park City over Labor Day. As we drove to Park City and then took our kiddos on the alpine slides that year, it was all I could do to hide my constant tears. We had delicately shared the news with our kids, but I didn't want them to see how truly broken my heart was. I wanted life to be as normal as possible for them! 

     Last week on Labor Day we continued our tradition and headed up to Park City for the day. On the drive there, all of the emotions from that day in 2009 came rushing back to me! For a several moments I felt how terrified, sad, and devastated I had felt that year. But as many of you know, we did not give-up and we held on to HOPE as we explored other avenues to save Mason's life. Most days that Fall, holding to just a thread of hope was how I got through the day, for HOPE was all I had!!! 

      As many of you know, after a few long months of diligent research and sending Mason's info to transplant centers across the US, Children's Hospital of Philadelphia and Lucille Packard Children's Hospital (at Stanford) were the two hospitals that strengthened our HOPE! They believed that Mason would still be able to receive a heart transplant!!! And, in April of 2010 he did receive his amazing new healthy heart at Stanford.....thus my message is: even through a storm of emotion, never let go of HOPE.

Here are our five kiddos together this year on Labor Day in Park City, 
still carrying out our tradition,
5 years after 'the devastating news',
 ....together because of hope, prayer, faith, 
amazing doctors and nurses, miracles, and love!

(And, I do truly believe that Mason still being
here is part of Heavenly Father's plan for him.
Mason must still have lessons to teach us!!!)


Hooray for a fun family day in Park City!!



"Having even a little bit of hope is the driving force that keeps us going 
when there is nothing else for us to hold on to."
~author unknown



and now...

BACK TO SCHOOL PICTURES

It's hard to to believe that another new school year started on August 20! 
Where did the summer go? 
How does time fly by so fast?
 My children are way too grown up!!! 
Can't they stay little forever?


Kaitlin -10th grade at Lone Peak High School









Braiden- 6th grade at Westfield Elementary

       
      Ammon- 4th grade at Highland Elementary 



Mason- Kindergarten at Westfield Elementary


My thoughts on Mason's first day of school that I posted on Instagram:
"Miracle Mason started kindergarten today! He was so excited! As for me, my eyes filled with tears to say goodbye! Tears of joy for something normal for this tough little guy who's been through so much, but also tears of nervousness and anxiety to let him go!! But, this mama bear already held him back from starting kindergarten last year, can't hold him back forever I guess!! Cheers to a fun and healthy school year!! 


Mason let me wait with him before school on the first day of school, because there were lots of other parents there too... But, not anymore. He wants to go all by himself just like the other kids!! So this mama bear watches from the car until the bell rings and he has safely walked into class. It is so so  hard to let go!!


Mason's teacher handed out this "lifesaver" letter to his classmates, 
just like we did last year, to help them understand how important it 
is not to come to school sick and spread yucky germs around! 
Hopefully this will help Mason stay healthy!!


Mason loves school, but definitely comes home 
exhausted and ready for a nap!
  But hey, my other kiddos come home tired too! 
This cute picture is of Kaitlin and Ammon who came home
 after school one day and fell asleep together on the couch. 
Oh, how would it be to be a kid again?!


I'm sorry for the long break between blog post, but always remember no news is good news! We did have a super fun and very busy summer, so I have a lot of great pictures to share. I've slowly been working on a summer post, so hopefully I'll finish it soon!

I hope all of you sweet Miracle Mason followers had a great summer too and have had a great start to the new school year!




Friday, June 27, 2014

Biopsy Day.....The Good and the Not So Good


We checked into Primary Children's Medical Center at 6am this morning. Mason rested while he waited happily and patiently to be taken to the cath lab for his heart biopsy. This was a follow-up to check on his mild rejection that was found at March's cath and biopsy (and that he's chronically been having since March 2013). Many thanks for all the prayers and positive vibes sent our way today! I know it all helps!!

Ok, so let's start with the good news..... Mason's heart function looks good and stable. Also, his biopsy results showed that his antibody rejection is slightly better! (For those that understand how Primary's scores their biopsy results, today's score was C2.5V2 ISHLT 1R pAMR 1i). Overall the results showed he's still in mild rejection, with the cellular being slightly more than before and the antibody being slightly less. I'll take it since it's not worse overall, meaning not going up on his steroids! Feeling grateful for this especially!!!We will just maintain his immune suppression meds as they are and continue his monthly IVIg. 

The not so good and the bummer of the day......Mason, the stinker that he is, spiked a 103+ fever about 2 hours after his biopsy. He continued to fever all day even after giving Tylenol. Because of this his heart rate and his respiratory rate have been high, and he has been miserable. So the transplant team admitted him to be watched over night. He did come down with a new cough last night so we did X-rays to look for pneumonia after the fever came on, but thankfully his lungs look good. The docs also ordered a viral panel which has come back negative so far, and blood cultures which are pending at least until morning.  I'm hoping it's just a fluke and he's fine in the morning, especially because we are supposed to head to California tomorrow evening for our annual trip to the beach!! If I don't post again soon then that means no news is good news and we headed to the beach!!


Praying for a restful night and no fever in the morning!!!

Saturday, June 14, 2014

Good-bye Crazy Busy May, Hello Summer Time


Mason's back rod expansion surgery went very smoothly. We just stayed the one night at the hospital and received his monthly IVIg infusion and then headed home Tuesday afternoon. Hooray for "one night stays" in the hospital.  This time though he has seemed to be in more pain than after the other 3 expansions. I'm wondering if it's because he went 8 months in between expansions instead of 6 this time, meaning more manipulating and expanding than before.....just a thought. But, we all know how incredibly brave and tough Mason is, so he'll be back in tip top shape in no time!

May was crazy busy! It always is! With spring sports we had at least 2 lacrosse games a week, 4-5 baseball games, and 2 tee-ball games. Then there's always spring concerts at school, end of the year programs, projects, papers, and tests. On top of all of that there's the usual weekly scout, young men's, and young women's activities. With that being said May is typically a month of cereal or fast food for dinner and very late bedtimes!! All that craziness sure creates some good memories though, and then a big relief when summer vacation is finally here!!


Mason

Tee-ball was so much fun!!! It was just
so wonderful to watch Mason do something
normal! Something that healthy little boys do!!








Mason would many times ask to hit last which meant
he would run all the bases making it a home run!!
(In tee-ball all the kids get to hit each inning and
 get on base, for three innings, and then 
that's the game. Simple and fun!!)






These little boys had a great coach too! Can you tell how much they liked him??!!





And best of all, they all believe they were the t-ball
Champions, because of a sweet mom who ordered
the team trophies! That's all the care about anyways
right? The after game treats and the trophy!!!

Mason and his friend Jett

Mason and his heart transplant friend Matthew.
What are the odds that these little buddies got
put on the same team?!! They were so excited to
play together! It was the greatest thing ever to
watch these two little boys who have been through
so much, having fun play tee-ball!!!


Ammon and cousins Ty and James had fun watching Mason's games.



This is Mason at his preschool Mother's Day program.
Mason had a great year at preschool! Thank you
Mrs. Frost and Learning Dynamics!



Ammon

Ammon is the sweet brother that loves to go to
all his brothers' games. He decided after one year
of soccer that it was more fun to be a on the sidelines
cheering. So that he does! And, he always finds
plenty of friends to play with at all the games!


Ammon took 3rd place at the pinewood derby car race this year!!
It was thrilled to het a trophy!!


Ammon's favorite field trip this year was fishing!
It was his end of the year field trip and he had a
great time! The parents and younger siblings were
invited to attend so even Mason got to try out fishing!


Ammon loved 3rd grade this year thanks
 to his fantastic teacher Mrs. Ruchti!



One of Ammon's best friend's is Sammi!
(Our nanny who stills lives with us and helps
me out part-time.) He tags along with Sammi
when ever he can! They go roller blading, fishing,
shopping, to the movies, and he loves to sit
with her at church too. She is an angel!!

Thank you Sammi for loving my kiddos!!!



Braiden

Braiden's baseball games and tournaments provide, a lot of
our family entertainment, because he's got them all the time!!
He enjoys it, is really good at it, and we love watching. 
(FYI: The pink socks are from the games the day before
Mother's day to honor us baseball moms.)










Braiden hit his first home run way out of 
the park in this picture below! 
(Mason is the official team mascot)


5th grade end of the year state reports and fair. Braiden and friend Max
were so glad that this was one of the last projects of the year!



Preston

Preston's lacrosse season was most of April and May 
with 1-2 games a week and daily practices. He has gotten 
really good and his games were super fun to watch. 
(Preston wore pink socks the day before Mother's day too!)






Preston also got braces on last month.
Silly boy was excited to get them on! But I'm
not sure he's loving them now that they're on though!




Kaitlin

Kaitlin graduated from middle school (here in our district
it's 7th, 8th, and 9th) and his headed in the fall to Lone
Peak High School! Here she is with 2 of her darling friends,
 Kelsey and Grace, before the 9th grade end of the year dance.



Good-bye Timberline.....here they come Lone Peak!




Good bye to school and crazy busy May,
Hello Summer Time.....

We went last week for a quick 3 day trip
to Lake Powell. It was warm, fun, and an
excellent way to start off summer vacation!
(And for Mason to get some fun in before
he got his back procedure with 12 stitches
that can't get wet for while!)



(Braiden wake boarding)

(Preston wake surfing)

(Kaitlin wake surfing)


Ammon, Kaitlin, and Mason all say,
"Peace out and have a fun summer!"




Thursday June 26 Mason has his next heart biopsy
to follow up on his reoccurring mild rejection. It
will have been 3 1/2 months since his last one, so
 we are sure hoping for some better results this time!


Thanks for checking in on Mason
and our family! Have a great summer!