Friday, March 13, 2015

Sunshine and Rain (MRI, cath, and biopsy results)





Yesterday we were at Primary Children's for Mason's annual cardiac MRI (to check his coronary arteries) and heart cath/ biopsy (to check pressures and rejection).  It was a long day, but Mason always loves hanging out at his 'home away from home'! Who wouldn't when you can lay in bed playing xbox, drinking slushees and sodas, and order any kind of food you want whenever you want! Plus when they know Mason and I by first name when we check into same day surgery, you know we've been there often enough for Mason to feel well loved and be quite spoiled while we are there!








We received the results before we left the hospital yesterday. Once again we were reminded that, "It takes both rain and sunshine to make a rainbow"! Mason seems to usually bring us a little bit of cloudy and rainy weather along with his sunshine..... the little stinker!

I will start with our good 'sunny' news for the day. Mason's arteries look great and very healthy. Hip hip hooray! Coronary artery disease is always a concern for heart transplant recipients. Most of the time when this occurs another heart transplant is needed, which especially with Mason's complicated history we hope that's not something we will have to think about (at least not for a long time). Along with the good news about his coronary arteries, his echo showed great heart function and his cath showed healthy and normal heart pressures. All of this we are certainly grateful for!


The biopsy results is where the cloudy and rainy whether came in yesterday..... Mason has been in chronic mild cellular and vascular (antibody mediated) rejection for two years now. From biopsy to biopsy (about every 3-4 months) it would sometimes improve a little and sometimes a lot, but never completely gone these last two years. Of course yesterday we were hoping for it to be all gone or at least better than his last biopsy in November, BUT it is slightly worse! In fact his level of rejection is right back to where we were exactly two years ago when we so unexpectedly found out he was in rejection. Bummer!!! For those who understand the biopsy rating that Primary's uses it is C3 V3, ISHLT 1r,  pAMR 2. At least it is still within the 'mild' range, but even long term mild rejection can cause problems, such as coronary artery disease. At least it hasn't yet, right?!  And, his heart function remains unaffected by the rejection also, thank goodness!


The transplant team met and discussed Mason yesterday to come up with a plan of action, before they came and told me the results. For now, he's back up on high doses of steroids, increased doses of prograf, and continued monthly IVIg infusions. When they get back his donor specific antibody blood work (sometime next week) they may or may not get more aggressive with their plan for Mason, depending if there has been a significant increase in these 'naughty' antibodies or not. Dr. Lal also plans to call and consult with the transplant docs at Stanford, to see if they would suggest something else to try and conquer this chronic rejection. 

As we have come to learn over the last 7 years, our amazing Miracle Mason 'rainbow' is made up of both rain and sunshine..... but this is what makes him who he is, and that is why we love him so!!! Please remember him and his special heart in your prayers, that we can get rid of this rejection once and for all!









Thursday, March 12, 2015

February Celebrations

February is always a busy month at our house,
full of lots of fun and celebrations!


Braiden's 12th Birthday
(February 8)

Braiden is our lovable, handsome, funny, hardworking,
amazingly athletic, smart, and always thoughtful 3rd child.
He has grown up way to fast!  It seemed like just yesterday
he was our busy-mischievous-into everything little toddler. 
And now, he's a helpful young man who works so hard to 
please us and make us proud! We love you Braiden!!!



(Braiden-age 3 at the beach in Cali)


(Braiden- wake boarding at Lake Powell last summer )


Braiden had a few 6th grade buddies over a (couple days early)
for some birthday pizza and then we went to Lowe's Extreme
 Air Sports for 2 hours of jumping, flipping, etc...


I even let Mason join in (it certainly gets harder as
he gets older to guard him from germs....he does not
want to miss out!), but believe me I practically 
bathed him in sanitizer during and after!


He loved every minute of being a normal kiddo!!


Ammon also had a great time and burned off 
lots of his abundant energy!


Braiden showed off his back flip for us too!


The night ended with some sweaty tired kiddos, 
a birthday song, and yummy birthday cupcakes!


During the fun night, Mason managed to trip over big 
sister Kaitlin and somehow hurt his foot. He limped 
around for a little while, but then wouldn't walk on it
at all. Over the next 4 days we went in for x-rays 3
different times checking for a fracture on his foot, leg,
or hip..... because he still could not walk on his left leg.
After no fracture showed up and we finally got him to 
walk just a little bit (with a limp) on the 7th day after
 the fall, we speculated a sprain or a pulled ligament.  
A month later, he's better now and running around just fine!




Besides a fun night at Lowe's, the one thing Braiden wanted
 to do for his birthday was to ski with Preston and his cousins. 

Here is a picture from the summer of 2009 of the four skiing buddies.
From the left to right - Braiden, cousin Peter, cousin Christian, and Preston
(This is was at Lake Winnipesaukee in New Hampshire)


......and here are the same four boys all grown up skiing at Alta
 together during Braiden's birthday weekend this year.
They are growing up way too fast! Can I just stop the clock?!



Braiden's actual birthday fell on Sunday this year,
which meant after a morning at church we had a
nice relaxing family day with some birthday pie
and of course a few presents for the birthday boy!

Hope you had a great birthday Braiden!!!



Valentine's Day


On Friday February 13th Braiden had his 6th grade
Valentine dance that they spent months learning dances
and preparing for at school. It's been a fun tradition that 
Kaitlin and Preston also took part in their 6th grade year.
The parents are invited to watch, take pictures, and even
dance one or twice with their son or daughter.



Braiden and buddy Max


Braiden was definitely getting his groove on!!!


After the dance Braiden, Mark, and Kaitlin headed down to
 spend the rest of Valentine's weekend in Las Vegas for 
Braiden's Baseball tournament.  They enjoyed some warm 
sunshine and Braiden played some great ball!



I stayed home with the other 3 kiddos and 
we had a fun Valentine's weekend too... 
we went out to dinner, to the movies, and to a wedding reception.
Thanks for being my dates Preston, Ammon, and Mason!!!







February = Heart Health Awareness Month
And more specifically, February 7-14 is Congenital Heart Disease
Awareness week. CHD's are what we have come to learn so much
about these last 7 years since our Miracle Mason joined our family.
I'm a month late with this (as usual), but still wanted to share some
CHD info to help all of you become more aware and educated about 
the heart world that affects countless children and families each year.



CHD Facts:

  • Congenital heart defects are the #1 birth defect worldwide.  Nearly one of every 100 babies is born with CHD.
  • There is no known cause for CHD.  Only 15 – 20% of CHDs are related to genetic conditions.
  • Congenital heart defects are the leading cause of all infant deaths in the United States.
  • Each year in the U.S., nearly 40,000 babies with CHD will be born.  Thousands will not live to see their first birthday and thousands more will die before reaching adulthood.
  • Pulse oximetry is a simple test that can be performed during newborn checkups to help detect some types of CHD. Early detection is crucial to saving little hearts.
  • More than 50% of all children born with CHD will require at least one invasive surgery in their lifetime.
  • Surgery does not always cure CHD.  Many Heart Heroes will require additional surgeries and lifelong maintenance to sustain their heart health.
  • (This list was taken from CongenitalHeartDefects.com.)


Ammon's 10th Birthday
(February 27)


Ammon is our sweet, kind, happy hearted, full of life 
always smiling, lovable, and friend to everyone 4th kiddo.
Ammon, life would not be the same without all your love 
and hugs! Thanks for being you!

(Ammon- almost 3 years old)

(Ammon skiing at Alta this year)


Birthdays are a BIG DEAL to Ammon!
He wants the balloons, the new outfit, and the whole world to know
that IT IS HIS BIRTHDAY!!! It's like a countdown at our house
from Christmas to the next biggest holiday, AMMON's BIRTHDAY!
Gotta love the kid!


Mason and I checked out Braiden and Ammon from school
for a birthday lunch, and it was Ammon's choice where we would 
go..... of course he chose the new McDonald's that had
a twenty minute wait just to get a parking spot! 



That night Ammon chose to go bowling for his birthday with
a few of his cousins. He loves spending time with his cousins!


Everyone had a great time celebrating this happy boy's birthday!


  
Can you tell, Ammon's favorite color is still green??!!


One of Ammon's gifts was tickets to go see Disney On Ice.....


and I was the lucky one who got to be his date last weekend!
Hope you had a great birthday Ammon!!!

 

------------------------------------------------------------
What's the latest with Mason?
After 3 days of laying around and not feeling great,
after his back rod expansion 2 weeks ago, he was up and ready
to go back to school and see his friends. He is one tough kiddo!

I have spent all morning at Primary's waiting for Mason and
finally finishing this February blog post. Today Mason had a
routine heart cath/ biopsy and cardiac MRI (to look at his coronary 
arteries). We are waiting in recovery now to see the transplant team.

I will post later today or tomorrow with the results.
Many prayers and lots of hope for healthy arteries and no rejection!






Monday, February 23, 2015

Back Rod Expansion Surgery

Mason made it to today without getting sick!! After post poning this surgery twice from getting sick, I'm definitely grateful that when today came he was healthy and ready. Mason and I checked at 6am this morning at Primary Children's. Silly boy was so excited to be here! He loves his home away from  home and is one very brave boy! 




They took him back to the OR at 8:00am (only a half hour past the scheduled time, so not bad!) and the procedure took less than an hour. For any one new to our blog, Mason had severe scoliosis which was unrelated to his heart issues. He had a 75% S curve and it was going into his right lung (his only good lung), so three years ago in April he had two expandable rods placed in his back to help straighten his spine. Every 6 months (sometimes it gets stretched to 8 months) he has to get the rods expanded to allow for growth. The doctor makes a 3 inch incision in his mid back to go in and expand the rods. With these expansion procedures the pain really isn't too bad and usually only lasts a couple of days. 


When I got to see Mason in the recovery area he was a a little drowsy and grumpy, but who wouldn't be right?! By 10:00 am we were moved to a room in the post op department where we have stayed all day to get his monthly IVIg infusion treatment. I'll always take a 2 for 1 visit when possible! Mason also had his monthly echo today and his heart looks happy and healthy! yay! The plan is to go home late tonight. Wish us luck! Hopefully Mason won't throw us any curve balls! 



On a side note, look who got glasses!! In the fall Mason didn't pass his eye exam at school or at our pediatrician's office. After waiting 4 months to get into a pedantic opthomologist we found out that sure enough this cute little boy needs glasses. And the good new is that he actually loves wearing them! 


Today while at the hospital I've been working on a February post, but Mason didn't let me finish it. He's been needing some extra cuddles and TLC. I will try to finish it this week. We have two birthdays at our house in February, Braiden and Ammon. Plus we always have lots more going on to keep us hopping at out house. 

Thank you for all the prayers and sweet messages of love this day and always! 







Friday, January 30, 2015

Where Did January Go?

        Wow, Christmas came and went so fast and now January is gone too! Sometimes I really don't know where the time goes,  the days tend to blend together. Our Christmas was very nice. It was cold, but beautiful and white with lots of snow and fun family time! The snow made some very happy kiddos, for there was lots of sledding and skiing with cousins and friends during their break from school. 

        Although not as much fun for Mason, who got sick the second week of the break with RSV.  So he and I had a lot of quiet snuggle time at home. Just as he was finally getting rid of his cough from the rhino virus that he'd had earlier in the month, he spiked a fever of 103 and his cough got worse. After seeing our pediatrician and having a viral test done at the hospital lab, we discovered it was RSV. I was worried he had influenza, so RSV was a slightly better option I guess. The good news is, even though he missed out on some fun activities with cousins, I was able to take care of him at home without an admit to the hospital! And the even better news is that he is over it now without it having turned into pneumonia!! The bummer is that having been sick with RSV we couldn't reschedule his back rod expansion surgery for this month as we had hoped for, so now we have to wait until February 23! The tricky part now is just keeping him healthy until then!

Mason had his monthly IVIg  treatment over night up at Primary's on January 19, and then Transplant clinic the next morning on January 20. Clinic went well, his blood work looked good, and his echo showed normal good heart function. We continue to see them monthly because of the chronic mild rejection he has been in for almost 2 years. As long as his heart function remains good then his next biopsy won't be until March to follow up on his rejection. This will also be his annual heart cath and cardiac MRI to look at his coronary arteries. 

Mason also had an appointment last week with an eye doctor, which we waited 3 months to get into. He didn't pass his eye exam at school so that's why we went to see a pediatric opthamologist. And guess who needs glasses? Yes, that would be Mason! He's actually pretty excited and has asked me everyday this week if his glasses are ready yet. So sometime next week when we get them, Mason will have a new style! 


And now some pictures from our Christmas and holiday break.....


The annual Christmas eve party and nativity with cousins at Grandma Marilyn's was fun and full of laughter as usual.


Wise man Braiden and shepherd Mason getting 
ready to act out the nativity.

Ammon (getting ready to be the star in the nativity) 
acting silly with cousins Peter and Brooke.

Kaitlin and all over her beautiful girl cousins
getting ready to be Mary and the chorus of angels.


With a few giggles here and there, beautiful Christmas carols, and
some amazingly cute actors..... the nativity that Christmas Eve
 night helped us remember the true meaning of Christmas!!!




Then we headed home to open up new Christmas PJ's and tuck some kiddos in bed so that the jolly old man in the red suit could come do his thing!




At 2am everything was finally ready for Santa and his elves to come spread some Christmas magic and cheer..... So 6am, when Ammon started waking everyone up, seemed to come way too early! 


Out of all the gifts the kids received, I think Mason's catcher's gear from
Santa was the biggest hit! He tried it on at least 20 times just on
Christmas day, and then at least 2 times a day each day since then!


Ammon asked for music chimes like our cute primary
chorister uses with the kids at church sometimes. Seemed 
like a funny thing to ask for, but Santa pulled through!


Braiden was super excited about his personalized 
wooden practice bat!


Christmas also means its time for new clothes....

and new shoes!


Do you think Mason was excited about 
his personalized bat too??!!



The other funny thing Ammon asked for was
a microphone headset like McDonalds' workers
use to take your order at the drive thru and he also
saw them being used in a school play. I will admit
it was kind of nice when it ran out of battery!!!
(And I conveniently keep forgetting to buy new ones!)


We've got some boys ready for some fun in the 
outdoors with a new airsoft gun and....


some new skis!


As you get older (She's an old high-schooler now)
the presents become less fun and become things you need
.... like a laptop.
But, Kaitlin is excited not to have to fight with the boys 
over our desktop computer now to do her homework!


Ammon, being the first to wake up on Christmas morning, 
was also the first to fall asleep after the fun and excitement was over!


And then there's Mason.....
who just kept trying on his new Christmas stuff


and playing with his cousin Brextyn who came
over for Christmas lunch!


So much preparation and anticipation for Christmas morning,
and then it's gone in a blink of an eye!!! 
But, I do feel blessed for our darling family and 
the Christmas memories we make together each year!


Some of the fun Strickland cousin activities over Christmas break.....

included the annual roller hockey game and skating at Classic skating
(Mason got to enjoy this one before he got sick!),



building ski jumps,


doing ski tricks,


and just lots of fun skiing and playing in the snow.....


(Preston and Kaitlin)


( Cousins Natalie and Chloe with Kaitlin)

(Cousin Natalie and Kaitlin)


(Braiden)






(Kaitlin and her cute friend Grace went sledding too)


Kaitlin also took her cute little cousins Coco and Thompson
that were here visiting from Maryland on a special date
 to Swig to get their famous sodas and sugar cookies!



And of course there was the sending off of the
Chinese lanterns on New Year's eve at Grandma's house.
(Chloe, Natalie, Kaitlin, and Grace)




Although Mason and I missed the fun New Year's Eve
 celebration this year, I was grateful for his sweet snuggles in Pj's 
 and especially thankful that I could take care of my little sick 
 buddy at home and not spend New Year's in the hospital!!!




I will update again next month.
May you and your families have a happy and healthy
NEW YEAR!!!


"The best gifts in life will never be found under a Christmas tree, 
those gifts are friends, family, children & the ones you love."
~author unknown