Thursday, October 29, 2015

September Days

Every year it seems like once school starts, fall sports are in full swing, and the demands of homework and school projects pile up..... there's just not enough time in the day!  And, time sure isn't slowing down as the kids get older! But more than anything, I feel blessed to share the chaos and crazy busy days with my special and amazing family! I know as usual I'm a month behind, but here are some of the things that filled our September days...

Mason continues to love love love school! I am so grateful for his strong little spirit and determination! Most of all, I'm grateful he's been healthy enough to do 'normal' kiddo things... like go and enjoy school!

Kaitlin went to Sadie Hawkin's with her friend Evan.
She was part of a fun group of cowboys and Indians.

On September 16th, the most beautiful, wonderful, kind, and fun daughter I could ever ask for turned 17! I truly can't believe my Kaitlin is 17! It seems like just yesterday she was my busy little toddler, getting into everything! I'm so proud of the amazing young woman she has become. She lights up any room she enters with her glowing smile and her vibrant personality!  
❤️ I love you KK!!

Kaitlin and her darling friend Kenna went to see the Taylor Swift concert a week before her birthday. Her ticket was the only birthday gift she asked for. They had a great time and next time I want to go too!!!

On the morning of her birthday a few friends threw her a surprise breakfast at Kneaders.

That night we took our birthday girl out to a family dinner at Texas Roadhouse. Yummy food and great company!

Then we headed home for some cake and gifts...

If we could just stop time right now?!
She'll being going off to college before we know it!
Which will be too soon!
She is the sunshine in our home!!
We sure love our Kaitlin!

Mason's school had it's annual  September Wolf Run. Even though Mason decided at the last minute he didn't want to run in it, he and I cheered all his classmates and friends on! There's always next year right?!

That same day I rushed over to Ammon's school next to run in his annual Highland Hawk Walk-a-thon with him. Ammon sure loves his classmates and his teachers!

Between July and October my kids have had 5 new cousins, 1 second cousin, and another precious little friend born. So there's been lots of loving on some cute little babies!

Mason and baby cousin Hiram

Ammon and baby cousin Hiram

Our nanny Sammi (who we sadly lost to her getting married and now becoming a mom) had a beautiful little girl, Ryan Elizabeth. Ammon loves her like she is his own baby!!!

Preston and baby Ryan

Mason and baby Ryan

On September 24 Mason had another back rod expansion surgery. He is always such a brave strong little guy, and loves going to Primary Children's! He feels right at home while we are there and is usually quite popular. I guess since the "Hotel on the Hill" has been a second home to him for his almost 8 years of life it's only to be expected that he is pretty well known and loved by many 
who work there and have cared for him. The surgery took about an hour, went very smoothly, and he came out about 3 cm's taller!

After the surgery he was admitted to the 3rd floor surgical unit to do his monthly IVIg infusion. And guess who was visiting the children that day?! The Ringling Bros. and Barnum and Bailey Circus!
Mason got to meet the Ring Master and a Julia the clown. To be honest though, he was scared of Julia (I think it was all her make-up) so as long as she stood outside of the room, he let her sing and play on her ukulele "Over the Rainbow" to him. It was super sweet! I love the great visitors who come to Primary's to cheer up the children!

The next day at home was definitely a day of rest for our little buddy, but within a few days he was up and running around, ready to go back to school! He is one of the most resilient tough cookies I know!

The day after Mason's rod expansion surgery, Mark and Preston headed down to Moab for Preston's mountain bike race. Preston did very well in his race, plus he and Mark had a fun weekend biking and hiking around beautiful Moab Utah.

Well, now that October is over too, hopefully I can get another post out sooner than later! October has been a fun and busy month as well! Thanks as always for checking in on our family and our Miracle Mason! He continues to defy all odds against him! He is doing amazing and we owe that mostly too his special heart donor! 

Wednesday, September 30, 2015

Summertime Wrap-up and Back to School

          This year it felt like the summer flew by way too fast, and now we are already 6 weeks into the school year! When my kiddos were all younger I use to think summer vacation was too long.... too many long days of bored kiddos wanting to be entertained! But now that they are getting older, especially my oldest three, they were so busy with sports, summer jobs, and trips that it seemed liked they weren't home enough! 

The trick is to enjoy life.
Don't wish away your days,
waiting for better ones ahead.
The grand and the simple.
They are equally wonderful.”
~Marjorie Hinkley

         One summer day Kaitlin and I had an appointment at her school to get some of her classes changed and then we had a few errands to run, so I left the 2 older boys (Preston and Braiden) in charge of the 2 littles (Ammon and Mason) for less than 2 hours. Oh boy, did I ever come home to one of those moments that tested my patience! What mischief could these boys have gotten into in such a short time? Well, they decided to turn Mason's police car into an 'undercover police' car. Lots of spray paint and stickers were involved in this project, and I'm pretty sure more paint made it on to places elsewhere then onto the car! They had quite a mess to clean up! And then the hard part was explaining to Mason that we couldn't change his police car back now!! He thought it was a fun idea in the beginning, but didn't realize it would be a permanent change! Ugh those boys!!! 

             I quickly had to change my attitude, to make light of what they had done, so that Mason wasn't too upset about his police car! I talked him into thinking that his 'undercover' car was really cool, but also taught him that he (nor his older brothers) should not ever paint anything without asking mom or dad! I learned a lesson too, not a good idea to leave those 4 home together!! For not only was the police car painted, Ammon had found some Halloween hair spray paint and greeted us with a head full of bright green hair (wish I had taken a picture)!! 

           In May Preston joined the Lone Peak High School Mountain Biking Team. So, he spent a lot of time training on the many beautiful trails not far from our home this summer! Below are some pictures of his first race in August which was during Alpine Days. He did really well that day and has continued to do amazing at his other races too!

              On August 11 Mason had his long awaited biopsy. I say long awaited because 5 months is the longest we've gone in between biopsies since he's been battling his chronic mild rejection for the last 2 1/2 years! As long as his monthly clinic visits and echo's showed him in good heart health the docs didn't see a reason to do it any sooner (and as long as we were continuing his monthly IVIg infusions and frequent blood work to make sure his Prograf level was right where it needed to be, which usually is at least 2x a month). Although heart caths/ biopsies are invasive and are accompanied by many risks, I was nervous to wait that long! 
              I think I was especially anxious because we had been messing around with one of his immune suppressant meds off and on for 3 months. He had been on a pretty significant dose of Cellcept 2x a day since transplant to treat and prevent antibody rejection. But in the spring when he couldn't seem to kick an awful tummy bug the team decided to switch him to Imuran, which is also for antibody rejection but usually not a good as Cellcept when dealing with that chronic antibody rejection like Mason has had, but it is much much easier on the tummy. The first time we only switched for about 3 weeks and then went back to Cellcept when his tummy was doing better. 
             Although, within a month the mean old tummy bug reappeared with a vengeance causing Mason to lose weight he couldn't afford to be losing! So once again we switched to the Imuran to help mend his little tummy.  I noticed this time that he was eating much better with the switch of meds and was gaining some weight back. So I talked to the team and we decided to leave him on it for the time being up until his biopsy, (which was about 6-7 weeks) kind of as a test to see if his rejection got any worse being on Imuran instead of Cellcept. Since he felt better on Imuran and was gaining weight it seemed worth it to see if possibly we could make the switch permanently!

"Today we are celebrating great biopsy results by heading to Lake Powell!! Mason's heart is happy and healthy❤️..... In fact these are the best biopsy results he's had in 2 1/2 years! He still has a little bit of mild rejection but it is ever so slight now! Hooray for good news!"

It was so wonderful to get these results! Now just to keep his heart happy from here forward!! He will continue monthly Ivig infusions to keep the naughty antibodies away and all of his meds/ immune suppression will stay the same (which are pretty high doses this far out from transplant, but that's what seems to keep his special heart happy).  Also he gets to stay on the Imuran which his tummy likes much better. In fact, when we checked in for his biopsy he was up to 36 lbs, his heaviest ever! He is a little guy, so every pound counts!

So off to Lake Powell we headed for our last summertime party of 2015....

And a party it was!! With good friends and family there
 to join us, we couldn't have asked for a funner vacation!

(Ammon and Kk)




(Kk and cousin Natalie)




(Preston and Braiden)


Tube wars are the best!

Of course Mason even played baseball!

Cousin Love 

Every day was a dance party too!

(Ammon dancing to 'Watch me whip"!)

(Uncle Dave teaching Kk how to swing dance!)

(Uncle Dave and cousin Stephanie)

The nights were just as much fun as the days!
Whether it was night surfing with glow necklaces,
star watching, or sitting around the campfire making
smores... many fun memories were made!

(Kaitlin- better known as "Kk")



(Kk and Preston)

(a few of the star watching night owls)

(more star gazing)

Smores, a campfire, cousins, friends, and Lake Powell
= a great combination for lots of yummy fun!

family photo 

Lve our family!

(Just a small portion of our army of boy cousins)

Lake Powell August 2015 was a blast!!

When our Lake Powell trip came to an end unfortunately we had to head home to reality. It was already the end of the summer and the beginning of a new school year! Once again in hit me that my kiddos are growing up way too fast! Can we just freeze time??!! I have one in high school, two in junior high, and two in Elementary school! For the first time in 17 years they are all in school, all day! It seems so strange not to have a side kick home with me during the day. 

Back to School Time...

(Kaitlin is a Junior at Lone Peak High School.)

(Preston is in 9th and Braiden is in 7th
at Timberline Middle School.)

(Ammon is in 5th grade at Highland Elementary.)

(Mason is in 1st grade at Westfield Elementary.)

I will admit, I was very very nervous to send Mason to school all day! And believe me, I do not go far while he is at school so that I can get there within a few minutes if there's an emergency... but he is loving it! He does come home pretty warn out from his long day at school, but he usually will walk in and say, "Mom, I'm not tired today!"  He just wants to be a big boy like everyone else. Although I miss him during the day, it is such a miracle to see how far he's come and how well he's doing! What a wonderful blessing! 

September was a busy month too, so that will be my next post soon. Also Mason had his back rods expanded again on September 24. Everything went smoothly and his recovery was quick! Thanks for your prayers. He is one tough little guy!

"One day at a time- this is enough. 
Do not look back and grieve over the past,
 for it is gone; 
and do not be troubled about the future, 
for it has not yet come. 
Live in the present, and make it so beautiful
 that it will be worth remembering."
~Ida Scott Taylor