Happy Spring! Happy 28 months!

Mason turned 28 months yesterday.

Always a great accomplishment!

Always another prayer answered!

Always another month worth celebrating!

We love you Miracle Mason!

Mason LOVES our daily walks!

Helping do the dishes. Although he doesn't fit in this

sink like he does the one at home, he manages to

soak himself from head to toe. Mason LOVES water!

We spend a lot of time playing ball too!

Mason must be taking after Daddy and his brothers.

He has a great throw!

Here's Mom and Mason enjoying a beautiful

Sunday afternoon in our "adopted" family's back yard.

Hope you are enjoying your Spring too!

We certainly are!

The flowers are absolutely gorgeous!

I even have a vase of huge sunflowers in our

little apartment right now thanks to

a friend from college I met up with here!

Thank you Aly!

I am trying to enjoy every minute this Spring

with our Miracle Mason!

Trying to LIVE in the MOMENT!

For we never know what tomorrow brings!

Always hoping for the best,

yet preparing for the unexpected!

Praying, that as we continue to enjoy

SPRING TIME & SUNSHINE,

even on raining days when we so miss our family,

we will continue to feel peace and comfort!

Praying that day will come soon when

I get that special call which says,

"We have a heart for Mason!"

Thank you for your continued support and prayers and please say some extra ones tomorrow! Today Mason had an echo and consultation to prepare for his HEART CATH tomorrow. I don't know the results of the echo. I didn't meet with our heart failure team, rather the anesthesiologist and heart cath nurse practitioners. Of course they had to warn me of all the risks and remind me that Mason does not have much of a reserve....(THANKS- I Already knew that! Did you have to remind me!??!).....so he'll probably stay the night in the PICU after, to be closely watched.

Why the HEART CATH? To get a real accurate measure of his heart function/ failure. Is his heart sicker than we think? Or is his treatment okay where it's at while we wait for his new heart?

I'll post with news after the CATH when I can tomorrow.

And last but definitely not least.......... the STATS of where we are at on the HEART TRANSPLANT WAITING LIST:

Here is the most current- and the statistics for kiddos Mason's age are increasing.
(all information according to www.unos.org)

As of March 30, 2010 there are 3,151 people (adults and children) in the United States waiting for a heart.


(OPTN data from March 26, 2010)

Nationwide:
There are 89 kids waiting for a heart in the age category 1 to 5 years in the whole United States.
There are 21 one to five year olds waiting for a heart in Mason's blood type of A+ in the US.

5 listed as a Level 1A

2 listed as a Level 1B (Mason's status)

2 listed as a Level 2

12 inactive on the list

Our Region, Region 5: Arizona, California, Nevada, New Mexico and Utah
There are 16 kids ages 1 to 5 waiting for a heart in the Region 5.

There are 4 one to five year old kids matching Mason's blood type of A+ in Region 5.

0 listed as a Level 1A

1 listed as a Level 1B (Mason) YAHOO!!!

1 listed as a Level 2 (Gabriella) (she is one of our heart buddies listed at Loma Linda)

2 inactive on the list

**So according to this data MASON is at the top of the list for his age and blood type!!!!

BYE

UNTIL TOMORROW!

Sleep-over

We came to the hospital yesterday afternoon for Mason to receive his second IVIg treatment. He will be getting them every 30 days while on the transplant list, to help keep his antibody levels down. The treatment didn't get started until 11 pm, because they had a dosage issue that caused a delay. By mistake his IVIg dosage was ordered for a 22 kilo child, but he weighed in at 22.2 lbs which is about 10 kilos. Big difference! Then the treatment takes 12+ hours. Mason has been a brave boy for this sleepover, but his least favorite part is his IV! That is why he's so sad in the picture below.

We do get to leave this afternoon and return to our "home away from home". Thankfully, it hasn't turned into a 4 day IVIg treatment stay like last month. Mason is already so excited to hear me talk with the nurses about going "bye-bye". I keep telling him he needs to get used to these sleep-over's though, because when his new heart comes we will have a VERY long sleep-over!

Next Thursday, April 1st, Mason will have a heart cath to check his heart function and pressures. It is routine to get one every 6 months while on the transplant list (with many many more after transplant). His last one was in September. That awful September 3rd that I wish I could forget, when we were told we only had months left with our Mason! But, now we are in a new chapter on a journey with renewed HOPE. I ask you to pray with our family that all will go well with his heart cath and of course that his NEW SPECIAL HEART will come SOON.

Here are a few pictures of our visit with Daddy two weekends ago:

Mark and Mason over looking Half Moon Bay

Mark, Mason, & I at the famous Maverick Surf Shop

Exhausted Mason after our weekend with Daddy

Here below is also a very special picture. One of my "Heart Mom" friends wrote Mason's name in the sand at a beautiful beach while on vacation in Mexico, to let us know Mason was being prayed for all the way in Mexico. Thank you Jess for thinking of us and for e-mailing me the picture!

Until I have more news.......thank you for all your prayers and for the donated flight miles!

Happy St. Patricks

"Happy St. Patricks Day!" from Mason

It’s been two weeks now since Mason was put on the Transplant list! He’s doing okay, we’re enjoying the sunshine and the beautiful spring flowers, but it sure would be nice for my cell phone to ring in the middle of the night with someone from the transplant team on the other end saying “We have a heart for Mason!”. Oh how we HOPE and long for that day to come sooner than later!!

Thinking of that day makes me nervous, scared, excited, sad, happy…….but yet a feeling of calming love overwhelms me from my Father Above. He’s letting me know all will be well with Mason as we will have to send him off to a very risky surgery, and with the sweet donor family as they will mourn the loss of their child. My emotions are like a roller coaster, my eyes filled with tears, but with faith we go forward with this journey to give our Miracle Mason a new chance at life.

Instead of that exciting phone call we await in the middle of the night……Mason was really sick the night before last. He threw up and dry heaved ALL night. I didn’t get him to sleep that night (or morning I should say) until 6am. I was afraid he was getting the flu or something, but I think it was just a bad heart night. After being rather lethargic and not himself yesterday by last night he seemed to be feeling better and today he is back to his happy self. Hopefully he won’t have many more of those episodes before he becomes our “new healthy little boy” with a new heart!

I did a little research on optn.transplant.hrsa.gov which is The Organ Procurement and Transplant Network. This site has numbers of all organ candidates (those listed for a transplant) in the United States. Mason is listed in Region 5 for heart transplant, which includes California, Utah, Arizona, New Mexico, and Nevada. So here is what I found: Mason has a blood type of A+ (I guess – or + doesn’t matter though, just the A type) and he is the only one listed right now in the 1-5 year old category with blood type A at Lucille Packard (Stanford Children’s). There are a total of 4 candidates with his blood type and age category in our region, which all happen to be in California. (There are, I think, 4 pediatric heart transplant centers in Southern California.)

Although, I have no way of knowing at what priority the other kiddos are listed, 4 kiddos waiting for the same heart that can come from 5 different states sounds like a lot to me! Wow! But on the brighter side at least it’s not 14 or 44! At least I do know that some special night soon ‘the stars and moon will all line up’ and Mason will be gifted his special heart……..just how soon that is and what “soon” really is I have left in the Lord’s hands.

And a special THANK YOU to a special friend whom donated enough sky miles to our family for probably two plane tickets! We are soooo grateful!!!!

We hope your St Patty’s Day was filled with many golden coins (chocolate ones will work) and beautiful rainbows…….With Love, Summer and Mason

Here's a few picture sent to me from home:

I Miss........

Mason and I had a special visitor this last weekend. Mark! Daddy! Oh it was so sweet to see how excited Mason was when Mark walked into our little ‘home away from home’! We had a great weekend together, sightseeing a bit of this beautiful bay area we are calling home right now. I can’t believe I grew up in Southern California and never visited Northern. It is absolutely gorgeous here.

We went to Half Moon Bay and even found the famous “Maverick Surf Shop”. We also drove up to San Francisco, walked around Fisherman’s Warf, saw some real street dancers having a ‘dance off’, and ate some yummy seafood. We exhausted little Mason! By the time we took Mark back to the airport on Sunday, Mason was pooped out! Thanks for coming Mark!!

Even though we got to spend 3 nice days w/ Daddy, now I want to see my other 4 kiddos who are at home in Utah. I can’t believe it was 4 weeks ago yesterday that I said goodbye to our family for an indefinite amount of time! Oh how I miss them (and so does Mason too!)! In fact, Kaitlin had foot surgery today and I’m not even there to hold her and love her as she recovers! Now I’m crying just writing this!!

Kaitlin before her foot surgery this morning that I missed!

I MISS…………

Waking my kids up for school

The crazy mornings getting everyone out the door

Cleaning up all the messes

Our morning prayer and kisses good bye

Chasing someone out the door cuz they forgot their lunch

Saying “ I love you, but don’t call me if your cold” to my silly boys who want to wear shorts to school when it’s snowing out

Trying to find clean socks for a certain kiddo because they’re all in the bottom of his bed dirty

Helping Kaitlin do her hair while buttering toast and holding Mason

Ammon finding me at 2am wherever I am rocking or walking Mason telling me, “Ammon hungry. Ammon want snack.” and then trying to rock both of them

Doing 4 loads of laundry everyday (don’t think I’m Superwoman..it only got washed not folded)

Wondering: “what should I fix for dinner or will it be okay to serve cold cereal again?”

Hollering at the the kids “Wash your hands please” when they come in the house

Thanking the kids for FINALLY doing their chores even though they cried and said, “You are so mean! No one else has to do chores”

Wiping gobs of toothpaste off the sink

Wiping sticky fingerprints off the fridge

Picking up granola bar or gum wrappers that “I didn't Do It” left on the floor

The crazy ‘bewitched’ hours after school when I have to say a million times, ”you can play AFTER you do your homework”

Fixing dinner while giving practice spelling tests

Sitting with the kids while they read to me

Rocking Ammon before bed at night and then putting him in bed when he asks “mom, sleep over with Ammon please?’

Taking care of sick kiddos (3 of them had strep last week)

Cleaning up more messes

Doing dishes again (or helping the one who's chore it is)

Watching Mason dance with the kids or follow them around the house

And I could go on and on, but most of all what I miss..........

are all my daily kisses and hugs from Mark, Kaitlin, Preston, Braiden, & Ammon!!!

And I must take this time to say THANKYOU to Sammi who has been our lifesaver & wonderful blessing who is doing all of the above in my place!!! Thank you to all those who lend her a hand too! And Thank you to Mark who is trying to play Mr. Mom at night after working all day too! I couldn't be here w/ our Miracle Mason if it weren't for all of you at home taking care of my family!

Sunshine and Springtime

Now that the stress is over of getting Mason listed for heart transplant, we have entered the next page of this chapter...............The Waiting Game!!! It seems like a dream that we are actually waiting to get Miracle Mason a new perfect heart, his perfect heart, the heart that will give him a new chance at life.

As we wait.......

Everyday we go out for a walk (or two) to find some beautiful California sunshine! Even with the recent rainy weather we've had we can always find a few rays of sunshine sneaking through the rain clouds, as well as some gorgeous rainbows. Mason actually loves to go walking in the rain. He laughs and laughs as the rains falls upon his face! The sunshine (and the rain) help us smile as we await this perfect heart, missing our family and home so far away.

As we're out walking I've loved admiring all the spring flowers and trees that are blossoming here. Life is usually so busy at home that "taking time to smell the flowers", let alone admire them, doesn't happen much......so, this we've been enjoying as well.

Speaking of flowers, Shiela one of my new friends here (Mason and I are living in the apartment behind her home) brought me a vase full of daffodils which had not opened yet and with it came a little slip of paper which said "...if put in fresh water these soon will open bringing you a smile and a touch of springtime". And that they have done! They have opened with beautiful yellow smiling blossoms bringing our little 'home way from home' some sunshine and some springtime as we WAIT.

Our little 'home away from home' is also adorned with pictures of our family back home and several drawings sent to us from Mason's biggest fans; his big sis Kaitlin and his 3 big brothers Preston, Braiden, and Ammon. I also put a little book together with pictures of our family that we look at often and Mason is practicing saying every one's names.

We feel the love and prayers from so many. This honestly helps us find the sunshine each day of this journey. Thank you , thank you!!

I want to leave you with one my favorite poems and lately I've read it daily:

Put Your Trust in God

By President Gordon B. Hinckley

It isn’t as bad as you sometimes think it is.
It all works out. Don’t worry.
I say that to myself every morning.
It will all work out.
Put your trust in God,
and move forward with faith
and confidence in the future.
The Lord will not forsake us.
He will not forsake us.
If we will put our trust in Him,
if we will pray to Him,
if we will live worthy of His blessings,
He will hear our prayers.

(From the funeral program for Marjorie Pay Hinckley, April 10, 2004; see also “Latter-day Counsel,” Ensign, Oct. 2000, 73.)

I know the Lord hears our prayers, if we trust, he will not forsake us! I just have to remind myself often. I will continue to go forward in our "leap of faith" with trust in Him, as well as find the sunshine each day as we wait (even if it's raining)!

With Love,

Summer and Mason

And just a few last matters of business.

***We have a new address because we've been invited to stay with the Brand Family in the apartment behind their home instead of returning to the Ronald Mcdonald House. For this we are very grateful.

1401 Edgewood Dr, Palo Alto, CA, 94301

***Many people have e-mailed me asking me to post if there is anything we need right now. Besides donations to Mason's trust fund (which is located on the sidebar of the blog) to help with present and future out-of-pocket medical bills, we would also be very grateful to anyone who has flight miles they could gift our family so that Mark and the Kiddos can come visit Mason and I.

Until next time............

IT'S OFFICIAL!

Finally, today we have good new! No actually......GREAT NEWS!

1) Mason is officially on the heart transplant list, as 1B status, here at Lucille Packard Children's Hospital. (Here doesn't mean he's in the hospital though.....just on their list. And 1B is second priority level)

2) The IVIg treatments that Mason had last week were successful! Before the treatments Mason had class I antibodies at 0 %, but class II at 86% (the smaller # the better) which included 3 popular binding antigens that would need to be avoided on his listing. Now Mason has 0 antigens that need to be avoided on his listing which opens him up to a much larger donor pool!! Hooray! (They didn't get the actual % of his class I and II, because it is difficult to get an accurate reading of that right after the IVIg treatments.) Mason will need to continue IVIg treatments every 4 weeks while waiting for his heart (and probably after too) to keep his antibody levels down.

Mason is anxious for me to get off the computer, but I want to thank you for ALL your continued prayers on our behalf! We feel soooo loved! I will post soon to let you know how we're doing or with any news. I don't have wifi access where I'm staying so it makes it difficult to post, but we've been coming over to the hospital when we can to use their wifi.

Please pray for the dear donor family also while you pray for Mason.

xoxoxo to our sweet family at home! We love you and miss you extremely!

Celebrating 27 Months

Every new month with our Miracle Mason deserves a CELEBRATION !

We are so grateful for his love of life, his happy personality,

and his constant smile even w/ all he's been through in his life!

Here are a few pictures from this last month:

Sweet Mason and big sis Kaitlin sound to sleep! Sometimes

Kaitlin has laid by Mason at night if I still had things

to get done before I could go to bed too! This night they

both must have been very tired.......so precious..(.Thanks Kaitlin!)

Ammon about to give baby brother Mason a kiss.......

so sweet, but "please don't wake him! He needs his rest!"

We celebrated 2 birthdays at our house in February

before Mason and I came to California:

Braiden turned 7 on February 8th! I love you Braiden!

Ammon turned 5 on February 27th , but we celebrated early!

Cute little boy thought it was his birthday ALL month long!

I Love you Ammon!

Mason's favorite parts about all the birthday celebrations

were the balloons and the music. Oh how he loves to dance!

"Look at me, I'm standing!" Mason pulls himself to a stand

all day long and he's starting to cruise furniture......

will he walk before he gets his new heart?!

This is the 'I want to smile, but I don't know you' look

Mason often gives when he's met some one new.

He just wants to make sure your not a nurse coming

to give 'owies'. Do you blame him?

As I was putting away and trying to organize our things

in our new temporary home (Thank you Brand Family)

Mason got into the kitchen drawers, found a pot, carried

it over to the treadmill, and began playing some extremely

noisy 'music'!! When I asked him what he was doing......

He smiled very big, laughed, and continued on with his

band practice. (Yes, and I'm loving the treadmill too!)

May there be many more months and years to

celebrate with our Miracle Mason!

Just have patience please........

Okay, so even though we all prayed that today would be the day Mason would officially be listed on the heart transplant list........that has not been the case!

After many, many phone calls once again today with our insurance and our financial social workers here at Lucille Packard......... the ball still sits in the court of the insurance ......and at the end of the day after dragging their feet again.........STILL NO FINAL APPROVAL!!!

Now the medical director at our insurance says he is seeking an external opinion about Mason's case before he'll give final approval for transplant.........GRRRRR! So frustrating!!!

After saying more than once to the financial social worker here, "Don't they realize Mason isn't healthy enough just to put on the back burner? Don't they realize I've left 4 other kiddos and my husband back in Utah?! Why are they wasting our precious time?!"...............

These were her last words to me today...."we do see this more often than not, so JUST HAVE PATIENCE PLEASE!"

JUST HAVE PATIENCE PLEASE?!! Okay, I'm trying, but we are already 10 days over the original day he was supposed to be listed!!

Hopefully, tomorrow will bring happier news! Besides, tomorrow Mason will be 27 months old(.....well if there was a February 30th that's when it would really be)!

GOOD NIGHT!!!