Sunday, April 24, 2011

Our Easter Miracle

(I started this Sunday evening but never finished it. Sorry it's late.)

Happy Easter

Mason is truly our Easter Miracle!

Last year our family took a huge leap of faith.
We temporarily separated for an unknown amount
of time to live in different states so Mason could
be on the heart transplant waiting list. We knew
it could be at least 12 months that Mason would
await a good match. If he could make it that long
was always our worry. But after only 4 weeks of being
on the transplant list (and 6 weeks of Mason and I
being in California away from our family)..............

Mason received his new heart on Easter Sunday!
What a Miracle!!!
(This picture was just a few hours after his
transplant surgery with big brother Preston.)

And here is Mason this Easter!
Healthy and Happy!

Even though he still refuses to walk, nothing
stopped him from joining in on the Easter egg hunt!
His little 'bum scoot' gets him around just fine.
(At least that's what he thinks!)

This was last year while Mason was in the OR
receiving his new sparkly Easter heart.
It was so special to have the whole family
together that day as we prayed for our sweet Mason.
(They had come to visit for Spring Break)

And this we are celebrating Easter together at home!

Easter was an emotional day for me this year. It has always been a very special holiday as we remember our Savior Jesus Christ, His life, His example, His ultimate sacrifice, His atonement, and His resurrection. But, now it even has a more personal meaning for our family. I spent a lot of time thinking about Mason's donor family and the sacrifice they made for us. It is a perfect example of Christ like love and sacrifice. I truly pray they know how much they gave to our family on a day they lost their sweet little one. Ultimately it is unconditional love what they did for Mason and our family. They had no idea who would receive their child's heart (and probably other organs as well), but they donated anyways. It was true love and kindness that gave our Mason a second chance at life last Easter Sunday.

I will forever be grateful for Mason's donor family. I pray and hope that they too believe because of our Savior they will get to reunite again with their little one someday.

A beautiful Easter scripture to leave you with today:

‘And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away.’” revelations 21:4

Happy Easter! Happy Spring!

Friday, April 15, 2011

Mason's First Real Vacation

True it is that Mason never was healthy enough to take on a vacation (well, anywhere further than our normal 40 minute drive to Primary Children's or our medically necessary trips to Lucille Packard Children's Hospital at Stanford) before now. That also means the only vacations I (Mom) have taken since Mason was born have been our get-a-way's to the hospital. Last Friday April 8 we finally heard from Mason's transplant team, after waiting about a week, that we had permission to join in with two of my Sister-in-laws (Mark's sisters) and their families to enjoy a 'spring stay and ski special' in Sun Valley Idaho. I will admit I was nervous to venture 5 hours away from our Primary Children's, which would also be the closest children's hospital if something went wrong while in Sun Valley.

I am used to packing now for our trips to Stanford, which when your packing for a child like Mason on so many meds (several needing to be refrigerated) and still mostly fed through a g-tube is not a 'throw it together' in 30 minutes task, but by now I know the routine. Although.............going somewhere else felt like I was packing the WHOLE house because we weren't going to be just 5 minutes away from the luxury of hospital diagnostic equipment if needed. I'm pretty sure my suitcase that I shared with Mason weighed at least 100 lbs!!! When the bell boy at the hotel lifted this suitcase from our Suburban to the hotel cart I suddenly felt the need to explain that, in addition to the normal items needed for a ski vacation, inside was a blood pressure monitor, a pulse oximeter for checking oxygen saturations, several cans of g-tube formula, and oodles of heart transplant medications. Instead of being so explicit, I just introduced him to Mason and said "he's had a heart transplant and doesn't travel lightly."

It was another one of those moments when Mason needed to be wearing a t-shirt that reads, " Questions??? Answer: I've had a heart transplant"!

Sun Valley is absolutely beautiful. It was the perfect 3 night get-a- way. We had a great time! Since it's the off season it was the perfect time of year for us to go. The hotel was practically empty except for our three families which totaled 22 of us. We were told numerous times by the hotel staff that they hadn't had so much excitement in a long time. One party of 16 kiddos is not a normal thing there!! I'm still not sure that being part of that excitement is something to be proud of, but I do know that we made many fun memories while we were there. I will admit that one of my children caused one of the most exciting, thrilling, but embarrassing moments. Ammon set of the fire alarm one night around 9pm. And no, it wasn't just a ' hotel manager can turn it off kind off fire alarm', it was a 'Fire Marshall has to come in the big fire truck and turn it off kind of fire alarm'!!! Oh memories......

Here's a few pictures:

Mason and I spent sometime sitting outside the lodge
watching everyone come down one of the ski hills. He just
loves being outside, but I forgot to put sunscreen on him,
and that was a big 'oops', cuz steroids and sun don't mix
well. He got a little sun burnt, but since we didn't stay out
too long it wasn't very bad. (Learned my lesson though!)

Mason saw all the cousins skiing down together and
shouted out for all of them "Hi guys!"

One time I walked (carrying) Mason about 1oo yards up the ski hill
and handed him off to Mark, so he could ski down holding Mason.
Mason laughed the whole way down. He absolutely loved it!

This was after Mason's little skiing experience down the hill.
He wanted "more". So then mark took him up the little magic
carpet and down the bunny hill a couple of times. Then the
employee at the bunny hill said that we shouldn't be doing that
and I just thought to myself, "if she only knew what our sweet
little kiddo has been through, she wouldn't have said anything!!!"

Even Ammon had some fun out on the ski hill! I'm so proud
of this little guy. And, when he falls he just laughs it off.
It's kind of funny that he can't remember his colors or numbers,
but he can "pizza" down the ski hill just fine! Way to go Ammon!

Now, here are the real Strickland Skiers!!! Kaitlin,
Preston, and Braiden have been skiing since they were
3 years old. They are much much better than I. What can
I say? I've just been a little busy having babies for several
years. I might be right on the same level as Ammon. Someday,
Mason will be strong enough to ski and we can all head out
together, but for now Mason still needs to figure out that
walking is definitely better than bum scooting.

The latest on Mason? He is doing pretty well. He has a bit of a cold right now, but nothing bad. He never had his IVIg treatment the week after we returned from Stanford. I'll just say that this is the fault of a one of my least favorite topics, health insurance. They are fighting the docs, saying it is unnecessary! Errrr!!!! Stanford only has a 99.9% survival rate of heart transplants, the highest in the nation, why would they now what's best for Mason??? We WILL get it approved!! Pre-transplant Mason was highly sensitized (high antibodies), and this is the treatment that will keep his antibodies under control. Keep then from attacking his heart!! I truly wonder why insurance companies claim to be looking out for our best interest!! He needs this treatment every 4 weeks and next Wednesday will be 8 weeks since his last one. He's never gone a month without it since transplant. I'm nervous and pray for our Father Above to protect his heart right now.

Happy Spring! I'll update again soon..............

Monday, April 4, 2011

Happy First Angel Heart Birthday Miracle Mason!

Dear Mason,

One year ago today was and will always be a very memorable and special day. On this day last year, early on Easter morning, as many prayers across the world were being said for you, we said a tearful but joyful goodbye......... sending you into the OR to receive your new 'Angel Heart'. As the OR staff rolled you away, Dr Olaf Reinhertz (your amazing surgeon) promised he would take good care of you and felt like this heart (which was on an airplane coming from Vegas as we spoke) was a perfect match for you and that your surgery would go well. Hearing his words and knowing that Heavenly Helpers and the Lord's Hand would be with him through your surgery I was comforted through the rest of the day as I patiently, yet anxiously waited to see you again.

This gift of a new heart and a new life couldn't have come at a more perfect time. You and I had been alone in Palo Alto California (the hometown of Stanford University) awaiting your new heart and had left behind our family in Utah. But, 2 days before this special day- Daddy, your brothers, your sister, and Sammi (our 'super nanny') arrived in town to spend Easter and Spring break with us. What a wonderful surprise it was when we received the exciting news late the night before Easter. And of all days to receive your new 'Angel Heart' there could not have been a more appropriate and perfect day ........ Easter Sunday! As we remember the sacrifice and resurrection of our Savior on Easter, we will also always remember the sacrifice and charity of your donor family to give you a second chance at life. Because of their gift to you sweet Mason, you were given a new beginning, a new life, just as Easter and Springtime symbolize.

Mason you are a very special child of God and you came into this world fighting to fulfill your mission here on earth. Your strength continues to amaze me each and every day, especially with all you have been through so far in your short life. You inspire everyone that knows you and even people that have never even met you, but that know of your journey. You have completely
surpassed all medical expectations, which makes it very obvious that Heavenly Father has a special and important plan for you. You have taught me so much about FAITH, PRAYER, and HOPE. You have taught me to appreciate the little things in life. You have taught me to enjoy today for you never know what tomorrow may bring. You have taught me how priceless life is and to never take it for granted!

Mason you are loved by so many. You are loved more than words can express by your parents and your siblings (Kailtin, Preston, Braiden, & Ammon)! Along with the challenges, your journey has brought our family more joy and blessings than I could measure or count! Friends, family, neighbors, and ward members from church have served our family in so many ways. We have been shown endless compassion and love for which we are very grateful!
Through this our family has learned to look for ways to show compassion to others and especially to other children born with disabilities.

(above picture: taken four days post transplant)

I know I've said this before, but I want to tell you again.......I feel privileged to be your Mommy. You are a little man full of more wisdom, patience, and unconditional love than most of us. I know without a doubt that you are a valiant spirit sent here by our Heavenly Father to teach us many lessons. Because of the kindness and selflessness of your donor family (Who we still haven't had the opportunity to meet....but hopefully someday we will) we will get to learn many more lessons from you in this life. I will forever be grateful to this family and still pray daily for there comfort.

May you always enjoy life to it's fullest! Happy 1st Angel Heart Birthday!

Lots and lots of love,