Thursday, March 14, 2013


The last time I posted we were in the hospital on Valentine's Day with a possible infection in his port (central line). We never found out if there was actually a bacteria growing or if there had been a contaminant in the blood culture test, but the doctors decided to have Mason stay on the IV antibiotics for 14 days just to be sure. They also ran a test while we were there to see if Mason had 'walking pneumonia' because he'd had a cough for over 2 months. That came back negative, but the IV Rocefin he was on seemed to finally clear up his cough. So he must have a had a bacterial pneumonia that didn't completely clear up with the IV antibiotics in January. Although..... about 3 days after the Iv antibiotic course was finished the cough came back!!! hmm??? Mason just always likes to keep us guessing!

(Valetine's Day in the Hospital)

We came home after only 3 days in the hospital, which I'll take anytime. We were able to finish the IV antibiotics at home through his port. Definetly happy to be home, but only 48 hours after being home Mason got sick with a nasty stomach flu. And it lasted 8 days! Yikes, I thought the poor little guy was going to wither away! Thank goodness for his g-tube though, because I was able to keep giving him gatorade and pedialite through it to keep him somewhat hydrated and out of the hospital. Since then Mason has been feeling pretty good except for his mystery cough. The cough is really only bad at night. He will cough so hard that it causes him to vomit up his bed time g-tube feed (He stilll gets a 6 hour tube feed at night and a 2 hour one at nap time to help him reach his nutritional and caloric needs). Hopefully we will figure this cough out sooner than later.

Not only has this been a long rough winter of sicknesses for Mason, you name it and we had it go through the other members of the familiy too. Besides the stomach flu which went through most of us, we've had croup, strep, and mono at our house too. I'm so ready for a healthy happy Spring! Somewhere in between all the sickie bugs we found time for some celebrations and special days this last month. Here is a family update.....

On February 8th Braiden turned 10 years old!
What a amazing boy Braiden has become. He is
so loving and caring. He is one very hard worker and 
Athlete should be his middle name. This last year he 
has played on a super leaugue basaeball team, a flag
football team, and a jr. jazz basketball team. All of 
which Braiden did very well at. He has also spent
alot of time this winter skiing with friends and cousins.
Happy Birthday Braiden! We love you!

Braiden had a sledding birthday party.

Throw a bunch of energetic boys out
in the snow and they'll have a great time!

Our family enjoyed the party too!

Add in some pizza, hot cocoa, cake,.....

and presents, and the party was complete!

Another Special Day We Remember:
Three years ago.....
on this day February 16, 2010 Mason and I said good bye
to our family to go to Stanford and wait for a new heart.
I call it our "Leap of Faith" because we left for an unknown
amount of time to try and get Mason a second chance at life.
I look back on that day and know how very heart broken I
was to leave my family and so scared of the unknown that
lay ahead. But, now 3 years later, with my heart full of 
gratitude for Mason's donor family, I can say anything is 
possible with hope, faith, prayer, and a mother's love!!!
(To read my posts about that day that we said goodbye and
took our leap of faith click here and here.)

On February 27th Ammon turned 8 years old!
It's so hard to believe that Ammon is already 8.
He is such a tender kind sweet boy. His love and 
energy just lights up our home. Ammon has certainly
come along way from when at age one we found out
he is develpmentally delayed. We have never truly been
able to find out a true daignosis, but we do know
Ammon just progresses at his own speed. He is doing
very well though! He attends a special needs small
group classroom at school, but for at least 1/3 to 1/2
of his day he is able to attend a regular ed 2nd grade class.
 Ammon loves to play soccer, ride his bike, and to ski.
Happy Birthday Ammon! We love you!

For Ammon's birthday we took his party to the 
Lone Peak Fire Station for a tour. 
(Ammon loves fire fighters! 
We went there last year too!)

All the kiddos got to take turns sitting in the big
ladder truck.

Ammon loved every minute of our visit
to the fire station!

But, Mason did not so much! He and Daddy
waited in the lobby. He is such a funny boy. He
will watch fire fighter and police officer shows
all day long (they're his favorite), but when we visit 
there in person he gets scared. Silly boy!

Ammon chose a baseball cake because he
also loves to go watch big brother play baseball.
(0r maybe he just likes to go play with the
other kids there and buy treats at the snack bar!)

On March 2nd Ammon was baptized.
It was a very simple and sweet baptism
with close family. It was a perfect day!

We even had some springtime sunshine on Ammon's special day.
Conragtulations Ammon! We are so proud of you!

Mason was just as excited for the baptism as Ammon.
He loves getting dressed up in his church clothes.

What's coming up?
(I have worked on this post for over a week now so I'm a little late on the first one....)

*Mason's annual heart cath and biopsy: March 14th- TODAY (he's in the cath lab right now as I am finishing this post)

It has been 8 1/2 months since Mason's last biopsy. This is the longest he's ever gone! He's only had 2 in the last 12 months. That is a big improvement over his first year post transplant when he had at least 12 biopsies. His second year he had 4. This one is a routine one that he will have every year in March right before his transplant birthday which is April 4th. Normally at an annual transplant heart cath/ biopsy it is a full cath to look at all of the cornary ateries, but with Mason they can't because his femural artieries have been occluded for 2 years now, which is the only way to go in to look at all the arteries.  So he just gets a partial cath and a biopsy to check for rejection. We will come back in April (I don't have the date yet) for an MRI to look at his coronary ateries.

Please pray all goes well in the cath lab and that we receive healthy results from the bopisy.

*VEPTR expansion- April 8th

Mason will have the rods extended in his back again. We saw Dr Smith, Mason's back doctor, last week. Mason has been complaining that his back hurts, but the doctor said that nothing looks abnormal. The pain may just be growing pains because it's time to extend the rods. I also notice he complains more with really cold weather. The rods may cause arthirtic type pain. Poor little guy! But, I will say these rods sure have helped his scoliosis.

Thank you as always for following Mason's journey and for all of your prayers! I will try to update tomorrow with results from the heart biopsy.

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