BUMMER

Here's just a quick update:

After a lot of waiting and frustrating phone calls today, Mason is still not listed!! Hopefully Monday! We will call it Miracle Monday.......that will be the official day!

Why not today?

The transplant team here at Lucille Packard had absolutely everything ready to list him yesterday minus the final authorization from our insurance. Today the insurance kept requesting one thing after another from our financial social worker here; including all the records from this week's hospital stay etc.... What is the deal? Our insurance gave pre-auth for transplant to Stanford back in October!!! The insurance has had everything they've needed or asked for along the way of this whole process, but today they would not give the final authorization!

Their reason or excuse ??

RSV! They saw Mason tested positive for it on Monday night! They said they saw no urgency to push the approval through today because he has RSV anyways! Yikes! Why do they care ?! The transplant team explained to them that they are comfortable listing him even with a positive RSV test, because he's truly not symptomatic. (We, the transplant team and I, agreed even though they probably wouldn't accept a donor for Mason right now because he has the RSV virus it's still a good idea to get him on the list to start putting his waiting time in!) Our insurance then said they wanted to speak w/ Dr. Everit (Mason's cardiologist in Utah) about this!! By that time it was 4:50 Utah time and they said they were closing and they would continue with his authorization on Monday! Frustrating? Most Definitely!!

Esther, our transplant RN, reassured us that they would solve this whole problem and get him listed no matter what on Monday! So Monday keep watching for the official post that he's listed!

Please pray with us Mason doesn't pick up any new sickie bugs and that Monday he will get listed for his new special heart!!

ps... As you know Mason doesn't like to do anything the easy way......We are at the Stanford ER, its 11:15 pm, getting Mason's g-tube button replaced. During his last feed tonight it seemed really loose and there was a little blood around the g-tube area. I finally decided after examining it many times that I better bring him in so that it doesn't fall out in the middle of the night.

It was a good thing I did. The ER Dr. just replaced it for me and the interior balloon that holds the button in place had gone bad and was split all the way open. Thank goodness it went much smoother than the time it got pulled out by accident! Now, we are just waiting to x-ray it to make sure it is placed correctly.

Never a dull moment!

ppss....we did have to leave the R Mc House because of the RSV! We had to empty our entire room! It was a pain, but at least we've been able to stay with a very sweet member of our church here in Palo Alto.

Until.....MIRACLE MONDAY!!!

One step forward, two steps back......

We are still at the Hospital (LPCH) this morning, which now for the next several months will be our 2nd "home away from home" (The Ronald McDonald House being the other). Even though I am very grateful for both of our new "homes" which are playing a huge role in helping us reach our goal (getting Mason a new heart), I must say I miss our "Hotel on the Hill" (Primary Children's). Palo Alto is beautiful, the people at both our "homes" here are wonderful, but Primary's was our comfort zone. We know so many people there and miss them all greatly!!! Thank you to so many of our friends there cheering us on right now!

(Mason taking a nap during his IVIG infusion treatment

yesterday. Thanks to the Benadryl they gave to him

to help avoid some of the side effects it can cause.)

One Step Forward.......

The neuro-skeletal doctor who specializes in muscular dystrophy came by to see Mason yesterday. After a very quick evaluation he assured us that Mason does not have muscular dystrophy and saw no reason to run any lab work etc. He then spoke with Mason's transplant team and crossed that off our check list to get Mason on the transplant list. Hooray! But we still have a few more items to check off.

Two Steps Back........

Since we all know Mason doesn't like to do anything the the easy way, we've had a couple of set backs!

First: (This doesn't really keep Mason off the list just in the hospital longer which he really doesn't like!!) Late monday night soon after they started the IVIG infusion he fell asleep (due to the benadryl they gave pre-IVIG). Then he began to have low blood pressure. This worried the nurse so she stopped the infusion and called the cardiologist 'resident' on call for the night. The decision was made to stop the infusion until morning when the whole cardiologist staff would be in the hospital in case there was a problem during his treatment. So that bumped us back 12 more hours. The plan was to do the 1st 12 hour infusion starting at 9 pm Monday, then a 12 hour break, starting the 2nd 12 hour infusion at 9 pm Tuesday. Then Wednesday late-morning after post-IVIG blood draws we would have been discharged. Now we will be here 'till Thursday sometime.

The biggest bummer is that the resident didn't make the best decision, cautious but not necessary! When the senior cardiologist 'fellow' came by early Tuesday morning he said that he would have kept the infusion going because he was tolerating the low blood pressure just fine. His heart rate and O2 saturations were good. The low blood pressure is probably his normal 'sleeping blood pressure' and had nothing to do with the IVIG treatment.

The second and biggest problem: Mason began coughing Monday during our walk over to the Hospital. Because his cough persisted after he was admitted the Dr's decided to isolate him from other kiddos and test him for viruses. I teased the nurses saying Mason was coughing just because he wanted a private room! I guess I shouldn't have teased because then in the morning I got 'pay back' with the test results. Mason has RSV! What? Are you kidding me? He doesn't even seem sick, except for a cough! Since Mason has been receiving Synagist shots again this year (RSV vaccine for kids with serious health concern) his symptoms are very mild. I learned yesterday that the Synagist doesn't prevent a child from getting RSV, but if they do get it the severity of the symptoms and the duration will be a lot less. I love Synagist!!

But even with less severe symptoms and no fever this causes us some problems...........

(1) Can he be listed? and

(2)How long is he contagious?

(1) As I was working on this post Dr. Rosenthal came by on rounds and explained that if his cough continues to get better (which it is already better since Monday) then he can still be listed in the next 2 days. But it is not recommended to put someone on by-pass (meaning perform a heart surgery) within 4-6 weeks of having RSV! He does still think it would be good to get Mason on the list, to get his clock ticking per say, but they would be VERY selective if he got a call with a donor match in the next 6 weeks. It would have to be a superior, absolutely perfect match for them to consider it for Mason during this time! Thats a bit of good and bad news altogether.

(2) If Mason is still contagious when he's discharged tomorrow we aren't aloud to stay at the Ronald McDonald House! Even though, that's probably where he got it (okay, it could have been the airplane too)! We do have some family in the area as well as friends through the church where we could go stay temporarily, but what a hassle! And why would they want RSV at their house either? And the R Mc House is in walking distance to everything we need.

I want to complain about these hold-ups and obstacles, but then I look back to September when we were given no hope for Mason and just months left with him here on earth. Then I feel bad for feeling discouraged and am just GRATEFUL for this new option we have been given to get our Miracle Mason a new heart!!! I'm trying really hard to continue looking at the big picture and have faith in Him, who's hands really are in charge of Mason's future. I know He will answer our prayers when the time is right.

Not Yet.....

I finally have Internet here at the Ronald McDonald House! Yeah! I feel like I've been out of touch. Thanks to Shauntelle for updating the blog for me on Friday morning.

We had hoped to get Mason listed by this afternoon, but we've been thrown a new curve ball!

One of the blood tests that is part of the pre-transplant work-up measures the level of CK (creatine kinase) present in your body. CK is an enzyme that when elevated above the normal range can indicate muscle damage or deterioration. This test is used to diagnosis two things that I am aware of and these are heart attack/ heart failure (because of poor function in the heart muscle) and a disease called Muscular Dystrophy. One reason it is part of the pre-transplant labs is because heart transplants can not be performed on individuals with certain types of Muscular Dystrophy. (Why? I am not sure!)

Here is our curve ball: Mason's CK came back mildly elevated above the normal range. Most likely this is all because of his poor heart function but because Mason is not walking yet (although, as far as I know all the heart kiddos in failure like Mason have delayed motor skills due to low strength and energy AND he is pulling to a stand all the time now!!!!), the transplant RN began to ask me some questions........such as does anyone in your family have muscular dystrophy?

And I answered too quickly!!! I should have told just a little white lie if I had only known the truth would prolong Mason getting listed today!!! (Okay, I really wouldn't have lied, but it is tempting to think so!) My answer was: YES, Mark's sister has 3 of 6 children with Spinal Muscular Atrophy which is a form of Muscular Dystrophy.

Do I think there is any chance Mason has Muscular Dystrophy? NO, well I guess I'm safer to say 99.99 % sure, because I've learned to never say never! He is so much stronger than my sweet nieces and nephew ever were and has accomplished more motor skills than they ever could, but I can't argue with protocols right?!

Here is what has to happen now to get Mason on the list............

He has to have a consult and evaluation with a Neoroskeletal doctor here a Lucille Packard (Stanford's children's hospital). But, it is a 7 month, yes 7 month wait to get into him as an outpatient! I about went into heart failure myself when Esther (Mason's heart failure RN) told me that! But Esther already had plan up her sleeve to get is into him ASAP as an inpatient, thank goodness.

The plan was to get Mason listed today or tomorrow and then next week admit him for a 2 day stay for his first IVIG (Intravenous immunoglobulin ) therapy. This is the treatment used here at Lucille Packard to attempt bringing down some of Mason's antibodies, which if it does would open up Mason to a larger donor pool. (I will explain more about the IVIG treatments as I learn more myself!)

The new plan: Admit Mason this afternoon around 5pm to start his IVIG treatments and then the Neoroskeletal doctor will come see him tomorrow as an inpatient. Okay, so this was a very quick change of plans, but we will do whatever it takes to get Mason listed ASAP!!! I do know Mason has guardian angels and a very loving Heavenly Father watching out for him and leading our way right now....I am just along for the ride! I'm trusting this little curve ball is part of the Big Plan to get Mason his new heart.

Thank you for all those at home helping out my family. The meals, the carpools, the phone calls, the concern, the love, and most importantly all the prayers!! Please pray with us also that Mason's 'soon to be' donor family may be comforted through the tough times that lay ahead for them. I cry just typing this, thinking about some family out there having to send their precious child home to Heavenly Father in order for my baby's life to be spared. It is absolutely heart wrenching.

I will update again when I have any new details.

And just a couple photos for now:

This was the day Mason and I left for Palo Alto.

All my darling kiddos in their Stanford shirts.

( Thanks to Heather who sent them home

with us in December after Mason's evaluation!)

Introducing 4 of Mason's biggest Fans!

They are cheering on Mason and the wonderful

doctors and staff at Stanford who will be caring

for our Miracle Mason!!!

Preston, Braiden, Kaitlin, Ammon

Many people have been asking for our mailing address here:

Ronald McDonald House at Stanford
520 Sand Hill Road, Palo Alto, CA 94304-2001

Good bye for now! Hugs and Kisses to my family at home that Mason and I miss sooo much!!!

ps. Please grab one of Mason's cute button's on the right side of my blog to put on your own blog! They were made by a dear Heart Mom Friend. (Angel Stephen's Mommy)

THE RESULTS ARE IN!!!!!!!

Hi everyone, it is Shauntelle posting for Summer. Have no fear, Summer would have posted on her own but the internet service is still down from the power outage the other day. Also Summer's cell battery has been dead and she was without a charger until today. Summer called me this morning knowing that people would be checking in on the results from Mason's long awaited CT scan yesterday.

All went well with the CT yesterday. The results look great as well. Mason's right pulmonary arteries still look good and there are no obstructions!!!!!!! The doctors feel positive about the results and they will show the results of the scans in the cardiology conference today.

Yesterday, while in CT they drew many of Mason's 'transplant labs'. These are labs they draw that specifically look at antibodies and other important information that will help them pick the perfect heart match for Mason. These lab results should all be in by Monday.

So the plan is to wait until Monday for the lab results and then place him on the transplant list . Summer is hoping that Mason will be LISTED on Monday. From that point on, Mason could receive his MIRACLE HEART at any time.

Strickland family, as always you have MANY people praying for your family. Stay STRONG, have FAITH and continue to keep HOPE alive in your HEARTS!

GO MASON!!!!!!!!!!!

The Next Chapter

We are here!!

We have started the next chapter of our journey with Miracle Mason and his broken heart!!

After quite a hassle to board our plane Tuesday night (okay, it was my fault but still very frustrating…..#1)my suitcases weighed too much and most of it was Mason’s formula, feeding pumps, meds etc…they were almost full before I even tried to stuff my clothes in! #2) my drivers license is slightly expired!!! Yikes, I guess I’ve had other things on my mind! I certainly had to do some sweet talking to get security to let me through!!)

Then came the hardest part ever….saying goodbye to our family!! We were all crying! It was horrible to see my kids crying so hard because they don’t know how long it will be until we are together again! My heart is broken, but yet I know we’ve made the right decision.

Then Mason and I were fortunate enough to be picked up from the airport by Mark’s cousins who live 10 minutes from the San Jose airport and stay with them that night. We came in too late to check in at the Ronald McDonald House. (Thank you Paige and Rich!!)

Wednesday morning (yesterday) we checked into our new “home away from home”, The Palo Alto Ronald McDonald House. The staff here is very nice and accommodating.

It was a crazy day to check in though, the power was out ALL day!! A small commuter plane crashed into some main power lines here in Palo Alto early yesterday morning and knocked out the power in the entire city! Luckily the R Mc House has emergency generators for medical equipment like Mason’s 02 concentrator. But, not for things like internet connections or water heaters. That meant no blogging to update all of you, and it also meant I took a freezing cold shower! (Wow, I am on a mission to get Mason a new heart.......but not a ‘cold water bathing mission’ like when I went to Guatemala as a missionary several years ago!!! )

The power is up and running again! Thank goodness!!

Today at 10 am Mason has his Chest CT with angiogram. Mason’s eligibility for the heart transplant list depends on positive results from this test!! The dr’s want to make sure his right pulmonary veins are clearly open and healthy. Please pray with our family that today will bring good news. That today will bring us a new beginning. The beginning of Mason’s journey to a new heart!!

To my sweet family at home…….”I miss you more than words can express! I pray today with many tears that Heavenly Father can comfort you while Mason and I are away. I love you!!!”

Leap of Faith

Mason and his beautiful baby blue eyes!!!

At this time I feel I am not only WALKING BY FAITH, but also taking the largest LEAP OF FAITH I have ever taken in my entire life. And, hopefully will ever have to take in my entire life! Decisions have been made, dates have been set, airline tickets purchased, childcare plans confirmed, and an agreement in place w/ Mr. Mom (Mark) to take over VERY SOON.

For those of you who don't know me very well, or only through the blog, I will explain how HUGE this is for me to leave my other four kids behind as Mason and I head to Stanford to await his new heart! I NEVER take girls' nights outs, let alone a girls' weekend away. I can count on 2 fingers the times Mark and I have taken an overnighter away from the kids. & the only other times I've spent the night away from my kiddos is when I've spent the night in the hospital with Mason. But, even then I never went more than 24 hours without seeing them. Since Primary's is only a 45 minute drive they could just come visit with Dad or Grandma. Now, don't feel sorry for me because this has been my choice not to get away...... I LOVE more than words can express my job as a full time mother and just have always found it hard to leave my kiddos, even for 1 night!!! (To those of you who do take girls' nights out etc...I do admire you though...because I know it's good for the soul!!!)

So, to leave my children for an infinite number of months in the care of someone else is going to be VERY hard for me!!! It makes me cry right now just writing about it. Mason and I will miss the kids and Mark very much.

But, to help my Miracle Mason receive a new heart with hopes of a much better quality of life and more time here on earth with us, I feel will be All WORTH IT!!!

I know I could not do this with out the knowledge of a Heavenly Father and without faith that He will comfort us as we are away from our family, and comfort those at home whom we are leaving behind.

Here are our plans:

On February 16th Mason and I will head to the airport with 2 suitcases, a carry on, a feeding pump, and a portable O2 concentrator. Yes, that's right, we will be living out of 2 suitcases for MONTHS. (I almost feel like I'm going on another mission like I had at age 21., when for 18 months I lived out of 2 suitcases. Only worse, It will be 2 of us using 2 suitcases!!!)

We will hug and kiss our family at the gate and board a plane to Stanford (well, to San Jose California) with I'm sure many, many tears!

Stanford University

(picture copied from stanford.edu)

I will leave my kiddos during the day (before and after school) in the care of Sammi. Whom my kids LOVE!!! She was our full time babysitter two summers ago. We couldn't be more thrilled or excited that she is moving back from Vegas to help us!!!! Grandmas, aunts, uncles, cousins, friends, and neighbors will also help and be of great support, but with Sammi they will have consistency everyday in our own home. ("THANK YOU SAMMI, MORE THAN YOU'LL EVER KNOW!!!!")

In the evenings, Mark will put on a new hat as 'Mr. Mom' after a long day at work. To him I want to also say "Thank you! Thank you with all my heart for all you do, and especially right now that you will be here to give the kids your love AND mine while I am gone!" He will most certainly fly to Pal Alto when Mason goes in for his transplant surgery, and other times to visit when he can sneak away.

I must say I'm overwhelmed with emotions at this time. Happiness, because I feel so strongly this is the right thing to do. Sadness, because I will miss extremely everyone at home. Stressed, because I have so much that I need to get done in the next 10 days ( not to mention celebrating Braiden's and Ammon's February birthdays). Grateful, because of the outpouring of support we are continuously given. Nervous, because Mason still has to have a positive Chest CT once we get to Stanford before they will list him. Hopeful, because we have been given new HOPE w/ an amazing medical option that may save our baby's life.

I recently read a talk by President Gordon B. Hinkley titled "The Faith to Move Mountains" and I found the following quote to be very appropriate to our families LEAP OF FAITH at this time:

"May the Lord bless us with faith in the great cause of which we are a part. May faith be as a candle to guide us in the night by its light. May it go before us as a cloud in the day."

Thank you for all your prayers which I know have given our family the strengthened FAITH and HOPE we have needed to move forward into our newest chapter of MIRACLE MASON'S JOURNEY

*********************And an additional extra special thank you to a wonderful friend who purchased mine and Mason's airline tickets with their flight miles as a gift to us!!!*************************

****One last thing, because many of you have been asking.....................The new date of Miracle Mason's Benefit Dinner will be announced soon on our blog. Keep checking back in for the details. I'm assuming some time in March or April.

Wow, Look Who's 26 months!

Another month older, another miracle!! Mason continues to surprise us all because of how well he is actually doing with half a heart and one functioning lung. Happy 26 months Miracle Mason!!!

" "Here are a few of things Mason likes to do:

He will scoot to the linen closet in my bathroom and

ask for my help in his own kind of way....."mama, uh,uh, uh"

pointing to the scale asking for me to pull it out, because he

likes to climb up and sit on it. What a silly little guy!

Mason attempts to get himself dressed.

Mason loves to find new things to carry (scooting)

around the house. This day he went into the bathroom

and dumbed out this basket that was full of magazines

so that he could put his own toys in it to carry around.

Loves, loves to go "bye, bye" even though most of the

time it usually is only to a doctor's appointment.

Mason pushes this truck full of blocks all around the house.

He has a favorite spot on the couch where he likes

to watch t.v., Signing Time, or Baby Einstein. And

continues to love ONLY water in his sippy cup.

Lately he falls asleep in funny places, like in his favorite

t.v. watching spot on the couch. Poor little Mason,

his heart his wearing him out :-(

Still enjoys sitting in his highchair for g-tube feeds

so he can join family meal times.

He loves to help during chore time, especially

if he gets to do the vacuuming!!

And he has to be part of homework time too.

Although, it makes him a bit sleepy.

Mason also doesn't usually like to miss out on

getting his brothers and sister off to school.

This is Kaitlin, Preston, Mason and Braiden. I believe

Ammon was already on his bus headed to school.

Some of the new things Mason can also do:

*says, "uh oh" (including when he has a messy diaper!)

*says "please" and "thank you" (with sign language too)

*climbs UP six stairs

*pulls himself to a stand at furniture and stays 5 min.

*talks on the phone (really)... says "hi" and "bye"

*crawls on all fours, but still prefers the 'bum scoot'

*dances EVERY TIME he here's music (not so new, but sooo cute!)

WE LOVE YOU MASON! YOU BRING SO MUCH JOY, FUN,

AND HAPPINESS TO OUR HOME!!