I've been meaning to do a post all month, but the time has just slipped away! Spring is always such a busy time with school and sports that the weeks just seem to fly by! Just a warning ahead of time... this is a rather long post, and I'm sorry, but I had a lot of catching up to do!
I will be completely honest... March was rough month at our house! I was so glad when March was over and April brought us a fresh beginning. Thank goodness for Springtime right?!! So where do I begin? First of all I guess was the news of Mason's worsened rejection. It hadn't been the news we'd been hoping for! This meant increased steroids, increased risk of infection, and a little guy that does not feel well while taking the higher doses. After the antibody blood work came back showing a significant amount of donor specific antibodies, but pretty similar to his antibody blood work done in November the team decided not to do anything more aggresive. They said since his heart seems to be handling this level of rejection just fine, that they'd rather not be more aggressive with treating the rejection because this would only increase his risk of getting nasty infections all the more. Its a fine line of balance!! Do we try to get rid of this chronic rejection once and for all or try to keep him healthy so he can enjoy being a little boy??!! But how long will his heart be able to handle this chronic mild rejection??!! For now we will just continue what we are already doing with his present immune suppression and monthly Ivig infusions and repeat a heart biopsy in August.
Mark's Back Surgery
Baseball March Madness
A week after Mason's cardiac cath, biopsy, and MRI... Mark went in for an emergency surgery on a herniated disc. I guess he'd been having a little too much fun on the slopes this year and his back had had enough! He met with the back doctor on Tuesday March 17, who took one look at Mark's MRI of his back and scheduled him for surgery the following day! Mark had a herniated disc that was pressing on his sciatic nerve, which was causing him a significant amount of pain. We were glad to find out the cause of the pain, but were shocked by how soon the doctor wanted to operate! It was a pretty major surgery and has required a good amount of recovery time, but for the most part he's now feeling much better than he had been before surgery. We were bummed about how quickly the doctor scheduled the surgery though (but knew it was totally necessary), because we had planned a family trip to St. George that week (Wednesday through Saturday) for Braiden's annual March Madness baseball tournament. So we sent Braiden with another family and stayed behind to take care of Mark.
Although, when we found out at midnight that Friday night that Braiden's team had made it into one of the championship brackets for Saturday... and Mark was doing well enough at that point to be left alone (plus he got a lot more rest with us all gone), I piled the kiddos in the car at 6:30 am Saturday morning and we drove down to surprise Braiden.
It was so fun to surprise him and watch his games that day! His team played really well and they took second place! It was a long drive to watch 8 hours of baseball, but well worth it!
Now hear comes some honesty... even though I was so glad we drove down to support Braiden on a whim, I received some very sad news just 45 minutes before we got to St George. And after I got this news I decided right away that I would 'bottle up' or 'put on hold' my emotions until after all of Braiden's games that day. We had gone to surprise him and the day was supposed to be about him! I prayed for our Heavenly Father to help me just get through the day, and I know he did. As hard as this was to do with the type of news I'd received, I was able to (for the most part) keep my sad emotions hidden until later that night, which I know now seems so crazy. I think with all I've been through with Mason, I've sort of built an emotional wall up around me. (I'm sure this has pros and cons!!)
My Little Brother Hunter:
Hunter Chase Skaggs
March 24 1987- March 21-20015
The heart breaking news I received that day was that my youngest brother had passed away that morning. It was just 3 days before his 28th birthday (way too young!!). I posted this on instagram and Facebook on his birthday:
"Today is my youngest brother Hunter's 28th birthday. Sadly he passed away last Saturday unexpectedly. Hunter was a big tall strong guy on the outside, but like a cuddly kind-hearted teddy bear on the inside. He will be greatly missed by many. Today, I'm so grateful for my belief and knowledge that we can reunite again someday. Until then Hunter, we will love you and hold you close in our hearts forever ! Happy Birthday Hunter!
To read his obituary go to: here (http://walkersanderson.com/obituaries/Hunter-Chase-Skaggs/Fairview-UT/1493380)
Needless to say, this was been a very difficult thing for our family to go through. He was a very kind, hard working, and handsome young man who we all thought was too young to be returning home to our Father in Heaven. Obviously He had other plans for our Hunter though.
If we looked at mortality as the whole of existence,
then pain, sorrow, failure, and short life would be calamity.
But if we look upon life as an eternal thing
stretching far into the premortal past
and on into the eternal post-death future,
then all happenings may be put in proper perspective."
~Spencer w kimball
This was my Facebook and instagram post the day of the funeral:
"It was a beautiful day to celebrate the life of my younger brother Hunter. Thank you for sending us the sunshine today Lil Bro. I'll love you forever Hunter!! It's not goodbye, it's I'll see you later! Until we meet again.....❤"
(Hunter's nephew's and niece)
(My younger brother Shayne and I)
I had the opportunity to give Hunter's life sketch at his funeral. I was overwhelmed and stressed that I had offered to do it, but I wanted to help out as much as possible to alleviate some stress for my parents and brothers. I ended up being so grateful I had! I loved reflecting back upon all the happy and fun memories of my darling little brother. Although I was almost 16 years older than him and left for college when he was only 2, we still had a special relationship! He was always my little tag along buddy when I'd come home to visit. I miss him and am so grateful that families are forever!
You never know what tomorrow may bring so please make sure that your loved ones know how much you truly love them!
As you can see now, March was just one of those months that we could truly say, "when it rains it pours"! We were excited for April to come and bring us some fun memories and celebrations... Mason's 5th angel heart birthday, Easter, Preston's birthday, Organ donation month, and Kaitlin's first prom!
We went to Las Vegas on April 1 for another baseball tournament and to get an early start on some spring break fun. Watching three days of baseball in the sunshine and fun dinners with family and friends was a definetly relaxing break!
While we were there we celebrated Mason's 5th anniversary (April 4) of his heart transplant. 5 years feels like a huge accomplishment and we feel so blessed for how well he is doing! We think of his donor family all year long, but especially on this day! It's hard to put into words how grateful we are for their decision to donate at a time of great loss for their family. We have never found out who Mason's donor was, but we still want them to know wherever they may be that we are so very thankful for the second chance at life they gave to our Miracle Mason!
Mason's 5th Angel Heart Birthday
Although we weren't at home on that day, we found a beautiful park where we could celebrate. With a bunch of red balloons and some yummy cupcakes we gathered as a family to commemorate the special day. The one thing we do know about Mason's donor is that they from Las vegas, so it seemed so perfect that we were there in Las Vegas for the weekend to honor this special child!
This was my Facebook and Instagram post that day:
"5 years ago today (which was Easter Sunday that year- 4/4/2010) Mason received the miracle of a new heart❤!! Our annual tradition is to send balloons up to the heavens to thank Mason's special donor and family! We will be forever grateful for their gift!"
While celebrating Mason's angel heart birthday
we also sang "Happy Birthday" to Preston,
who's birthday was the next day (Easter Sunday).
Since we were still in Las Vegas on Easter Morning, when the kids woke up they found that the Easter Bunny had visited our hotel room! It wasn't a typical Easter morning, but the important thing is that we were all together as a family. We were able to watch the LDS general conference over the internet and hear some beautiful Easter messages.
"In this Easter season may we reflect upon and rejoice
in the redemption provided by our Savior, Jesus Christ."
~Elder Quentin L Cook
Mason put this Easter outfit together all by himself for the drive home to Utah... silly boy!
Kaitlin stayed in Vegas a couple of extra days with cousins and then she flew back to Maryland to spend the rest of Spring break with Mark's sister Tiffany and her darling family.
She loved her visit to Washington DC!!
Mason and Ammon were sad that our Easter weekend had passed and we had not painted eggs (would've been kind of hard in a hotel room!), so I came up with a good solution...We painted eggs the day after Easter once we were back home, and did a belated Easter egg hunt. The little boys loved it and it was a great Spring break activity!
Preston's 14th Birthday
Happy happy 14th birthday to my Preston!! He loves to ski, surf, mountain bike, and play lacrosse..... But he is also so kind, smart, loving, and helpful! Thanks Preston for being you!! Sure hope you had a happy birthday Prest-o! I'll love you forever and always, ❤ Mom
Preston's birthday fell on Easter this year, so we had a double celebration that morning in the hotel with him opening up a few gifts, but...
his real celebration took place on the slopes at Alta for a few days following his birthday! This kid loves, loves, loves to ski! He would do it everyday all winter long if he could!!
Now that Spring is here he's also been spending quite a bit of time playing lacrosse. We love watching him play too!! Here he is with friend and teammate Cooper...
April is also...
Organ Donation Awareness Month
For organ donation awareness month Mason and I got to help hand out cookies to the wonderful nurses and doctors and Primary Children's on April 23. We were so excited to do this just 3 weeks after we celebrated Mason's 5th heart transplant anniversary! The gift of his heart transplant has brought 5 more amazing years with our Miracle Mason than would've ever been possible, and hopefully many more years to come! Have you ever thought much about organ donation? Are you a registered donor yet? (You can register at www.donatelife.net)
There are currently more than 123,000 men, women and children waiting for life-saving organ transplants. 18 of those people die every day waiting. Here’s the crazy thing… 90% of Americans are aware of organ donation and support it, but only 30% have done anything about it. Why don’t they? I’m guessing they must have questions, don’t really understand, or simply haven’t cared enough to register.
Here’s a great video by HRSA posted on the Donate Life America website that explains organ donation and transplantation, and how it works. Click here to watch it.
Kaitlin's First Prom
Can you believe my Kaitlin is old enough to go to prom??!! It sure makes me realize that kids grow up in a blink of an eye, so treasure your time with them while they are young! Kaitlin went to prom with our darling next door neighbor Cason. They've been friends since 2nd grade and it was so fun to see them go to prom together as sophomores!
Kaitlin had a great time with Cason,
her dear friend Kenna, and the rest of their group!
And maybe I'm biased, but what a beautiful and handsome group of friends!
That pretty much sums up our April if you add in spring sports, lots of homework, and end of the year school projects. April was definitely busy, but great... and it treated us a whole lot better than March did! Thanks for checking in on us and continuing to pray for Mason's health, strength, and his special heart.