Wednesday, November 9, 2011

Mason's Make A Wish Journey

 I think most everyone has heard of the Make-A-Wish Foundation, but if you haven't let me just tell you it is a very special and absolutely amazing foundation! It is a national foundation with most states having their own chapter. They are a non profit foundation which sets out to grant the wishes of children with life threatening illnesses. Their main goal is to give back to these children what there illnesses have taken away- laughter, strength, joy, and hope. In order to make this possible they receive a lot of help, volunteers, and donations from the community. Please click here to read more about what they do, some of the special children they have granted wishes to, and maybe how you can help too:

I knew personally about Make A Wish because we've had two nieces and a nephew who were born with Muscular Dystrophy and have all been granted wishes. In fact, about a week before Mason was born our family had joined our niece Madeline at her wish making party. Never did I dream or fathom that my soon to be born little Mason would also be granted a wish someday! (Remember Mason was not diagnosed in utero with his heart disease!!!) Also, as I look back upon Mason's almost 4 years of life I cry thinking about the many miracles that have saved his life thus far, enabling him to even be granted a WISH!

In July Mason and our family received a visit from two wonderful
wish granters from the Make A Wish foundation. Sherrie and Jannessa
brought Mason some balloons and a bucket full of fun surprises. He
didn't know what to think or what was going on. But, he definitely liked
the new gifts, especially the baseballs!!! 

During our visit they explained to us how the wishing process
 works and shared with us a few wishes that other children have
 been granted.  One important step of being granted a wish 
is receiving doctor's approval. Knowing this ahead of time, I had 
already done my homework and discussed different options with 
Mason's transplant team at Primary Children's. One very popular 
wish is spending a week with your family at Disney World in Florida. 
So I asked their opinion on Mason receiving that as his wish and
they said they were not comfortable with him traveling that far away 
from Primary's or Stanford, especially with how sick his lungs got 
this summer with pneumonia. Needless to say, my other kiddos were
disappointed about this!!! (But, hey it's Mason's wish anyways.) 

(Mason and big brother Braiden playing a 
little baseball during our visit.)

I had also already asked if Mason could wait to be granted
his wish until next year when he was a walking, talking more,
and further out from transplant. But, unfortunately with heart
transplant kiddos the protocol is within 18 months of their
 transplant they need to receive their wish. So, we decided we 
would take some time as a family to help Mason come up 
with a wish ......keeping in mind he needed to have his wish
 granted before the end of October. 

Once Mason had a wish in mind (with just a little help from us)
we were to call his wish granters to let them know. They would
then schedule his wish making party at their Wishing Building 
in Salt Lake City, where he would officially make his wish in the 
special "wishing room".  Following Mason's party his wish 
would be granted soon thereafter. 

Although........ as most of you know,  Mason
doesn't usually like to follow normal guidelines. 

Once I spoke with his granters about what we had decided, 
we tried to set a date for his party. But, with fall sports and school 
activities we weren't able to find a date that Make A Wish also 
had open until October 7.  Now here's the out of order non-normal 
way of receiving a wish: On October 3 I received a phone call that
 Mason would either need to have his gift installed on October 6
 or not until the end of November, because the installers were
 booked up! So if Mason wanted to enjoy what was to be installed 
before it got too cold I definitely chose the earlier date. Thus, 
Mason was granted his wish before he even really wished for it! 
And, just one day before to be exact!

October 6, 2011

Mason watched for hours as his special wish was installed!
He was so very excited that he did not want to leave his 
front row seat at the window. I knew then we had helped
him make a great wish choice!!!

Introducing.........."Mason's Park" as he calls it!
As soon as the play set was completely installed, 
Mason said to me, " Jacket mom! Help me please! Go
swing now!" So we put on our jackets and out we went. 
His smile couldn't have been any bigger!!!

While at Stanford before and after his transplant, Mason
and I would visit the park everyday, sometimes even twice
a day. His favorite thing to do was swing. Since we've been
home, life doesn't allow us as much time to visit the park quite
so frequently, but at brothers' baseball games this past year
you could always find Mason on the swing set. Even when the 
games were over for the day he didn't want to get off his swing!!!

So now Mason has his very own park. Of course,
he is very kind to share it with his siblings and the rest
of the neighborhood. In fact, I'm thinking of making a 
sign that reads:

  "Welcome to Mason's Park. 
 You may stay and enjoy until dark
  but, PLEASE remember to take
 your socks, shoes, and jackets with you!"

Because, let me just tell you .........we have accumulated 
quite a collection of homeless items in the last month.

(Ammon enjoys it just as much as Mason! Out to
 the play set is the first place he goes after school.) 

What a perfect wish for Mason! We couldn't be more 
grateful for Make A Wish and their kind gift to
our one of a kind Miracle Mason!!!

October 7, 2011

Welcome to Mason's wish making party!

Mason was given a gift bag full of more presents from
his sweet wish granters. Of course lots of sports items!

The blue mitt was a big hit. And still is...
He sleeps with it every night!

We celebrated with yummy cake, chips and pop.
(hmmm....chips? His wish granters sure knew what he likes!)

Family and friends that joined us that night 
signed Mason's pages in the Make A Wish scrapbook.

Each wish child gets their own star to hang up in the
Wishing Building. I was given the responsibility to write
on Mason's star. Each star is hand made from glass and 
unique just like each child is so very special and unique.

It was a fun evening for Mason. Many of his cousins
were there to help him celebrate his wish.

Soon the time came to visit the "Wishing Room".

Mason was given his very own special key to unlock the door.

Everyone joined us in the room and watched as 
Mason officially made his wish.

The room was almost magical with its 
special lighting, music, and waterfall!

 Mason placed his wish (written on a rolled of 
piece of paper and inserted into a rod iron capsule)
 into the top of the wishing wizard's hat. And then
the true magic began. The lighting in the room
began to change into all the beautiful colors
of the rainbow.  Feelings of peace and hope
filled the room...........


Mason was definetly the shining star of the evening!

As you can see in the pictures,
he wanted to walk instead of being carried
the entire night! He felt like such a big boy!
(He's still needing assistance to walk, but soon
he'll be running around on his own.)

Hundreds of star hang from the ceiling on the 
first floor of the Make A Wish building.

Everyone watched as Mason helped raise his star.

Mason's star now joins the stars of 3 of his cousins
and those of many other very special kiddos. Mason 
is also invited back to visit his star and the wishing
room at anytime.

Mason will always hold a special place in his 
heart for his wish granters, Sherrie and Janessa.

Thank you Make A Wish from Mason and our family for
 the play set and a wonderful and very memorable evening!

Good bye Make A Wish! We will visit again soon!

A quick Mason update:
1)Two weeks ago we met with the nutrition clinic at Primary's to talk about how to put some weight on Mason. After running several blood tests and stool sample tests we sill don't know why he's had diarrhea since June! So now we are experimenting with different G-tube formulas to see if that will help. I prefer to do blended foods, but right now we are trying to see if he has some food intolerances and the easiest way to do that is by process of elimination. (We've already done food allergy tests, which all came back negative. But, sometimes there can still be intolerances.) They also started Mason on a medicine which should help increase his appetite so that he will take more in by mouth. So far it seems to have helped a little bit. He is down to 22 lbs and should at least weigh 28 lbs for his height! Part of the issue is also that he has become so much more active coming off the steroids..... thus burning a lot more calories. 
2) At cardiology/transplant clinic that same day Mason's echo looked terrific! Although, his chest x-ray showed some haziness in the lower lobe of his left lung. Possible pneumonia would explain the persistent cough he'd had for 3 weeks. So he was started on an antibiotic. It helped the cough thank goodness, but only made the diarrhea worse (along with a miserable yeast rash). One step forward, two steps back! No, honestly I am so glad we got rid of his cough, before it turned into a pneumonia that checked him into the hospital!!!
3) Drum roll please............Mason is completely off of steroids! A long time we've been waiting for this. 18 1/2 months, that's all! Now we just have to pray he stays out of rejection so he can steer clear away from the "return of the steroids".
4) As I finish up this long post (it's only taken me two weeks), I am sitting next to Mason who finally just fell asleep (at 12:15 am, November 10th) as he is hooked up to at least 50 different wires in the sleep lab at Primary Children's. The transplant team has wanted us to do this since June to look for possible sleep apnea, which is frequently common among heart transplant kiddos. Mason has cooperated much better than I thought. With a just a few tears he let the techs hook him up without much of a fight. Wow he's come a long way with these hospital over-nighters! You are a trooper Mason!
5) Mason enjoyed a fun Halloween as a darling little skeleton. That will be my next post and hopefully you won't have to wait 2 weeks for me to post it this time.

A quote to leave you with:

  Hope is one leg of a three-legged stool, together with faith and 
charity. These three stabilize our lives regardless of the rough 
or uneven surfaces we might encounter at the time
~President Dieter F. Uchtdorf~


sheila said...

Great post with so much wonderful news. Mason is off steroids!! Make a wish!! Walking!! Thanks for sharing.

Jamie said...

I'm so glad his wish was granted and that he can enjoy it every single day. So happy for him to be off those yucky steroids. He's starting to look like a little man. And he looks so happy. YAY for walking!

Cassie and Chad said...

I loved hearing about this. What a miracle! And what an awesome wish for Mason. So happy he is off Steroids. What a sweet family you have. We would love to get together with you guys some time. Sure love you guys!!

Summer said...

Such a wonderful post. I am so happy he was granted a wish and what an awesome wish.
So glad to hear things are going well.
Continue to keep you in my prayers.

cici said...

I love his wish that keeps on giving.
I am so happy Mason is doing so well and all our Prayers have been listened to and fulfilled.
God Bless this sweet little boy who has overcome all odds.

Laurie said...

What a GREAT post! It was so interesting to find out all that was involved in a child's "Make a Wish". Thanks for letting us all in on the details and events. I pray Mason enjoys his gift for years to come!!

D&E said...

So glad that Mason is off steroids. If, for no other reason, Summer, than the fact that you don't have to give them any more . . . Here's to one less med to keep track of! Congratulations on this wish granted for Mason. I hope and pray that you and Mason will have many, many more wishes come true for you.

Djinni said...

Excited to hear Mason got his wish, and so fast. Make-A-Wish is truly one of the best Non-profit's I know. They have done so much for our family I have lost count. I pray for these heart kids daily that they can stay healthy as much as possible and live life to the fullest. I hope to hear more great stories about Mason in the future.