Thursday, December 25, 2014

Merry Christmas

Merry Christmas to your family from ours!
May we all remember the real reason for 
this special season today and always. 
May our hearts be filled with more hope, 
charity, and love as we recognize our  many
 blessings from Him, our Savior, whose 
life we celebrate this Christmas day.
We send you love and best wishes for a 
healthy and happy new year!

Saturday, December 20, 2014

Change of Plans

Mason came down with a high fever of 103 and a nasty cough the night before he was scheduled for his back rod expansion surgery. Such bad timing! He hasn't been sick all fall! We were supposed to check in at 6:30 am to same day surgery on December 10, but instead I called at 6am to cancel after being up all night with a pretty sick little guy.  The fever lasted three days and the cough has lingered, but is much better than it was. We probably won't re-schedule his back surgery until January, giving him time to completely get over his cough. Its just not a good idea to mix anesthesia with a cough, especially with how prone Mason is to getting pneumonia after being on the breathing tube for a surgical procedure. Although it certainly would have been nice to do it before the end of the year, since we've already met our max out of pocket with our health insurance for the year. I guess we will just meet our deductible and max out of pocket really early next year instead!

As for the IVIg infusion treatment that he was also supposed to receive during December 10's hospital stay, we canceled that as well because of being sick. Since he's feeling much better we are at Primary's right now, Saturday night December 20, staying the night while he gets that IVIg infusion.
He's such a funny boy..... he was super excited to come stay the night at the hospital! Only a frequent flier kiddo like Mason would be excited to go to the hospital!

I talked to the transplant team this week about the results from Mason's immune-assay test that we drew at clinic two weeks ago. This test looks at how your body is responding to immune suppression treatments/ medicines. Mason's results showed that he is very immune suppressed. The team does not want to treat him with Retuximab (an additional immune suppression iv medicine) at this time. Although it is possible that it would help get rid of his chronic antibody rejection, it would not be good for his little body to be more suppressed. It is one of those 'fine line' decisions. If his heart function was down because of the rejection then it would be worth taking the risk of increased infections, but since his heart function remains strong and healthy even through this rejection we don't want to suppress him any more than absolutely necessary. With these results though, we do know how very immune-suppressed Mason truly is, and how important it is for him to stay away from anyone who is even the slightest bit sick.

Thankfully Mason was feeling well enough to return to school this week,
because he was so excited to sing in Westfield's Christmas program and to
 participate in his class party! And, I am just so grateful for all the  'normal'
 kiddo experiences Mason has been healthy enough to enjoy this year.

Now we just hope and pray for some healthy holiday fun for
Christmas is just a few days away! 

Sunday, December 7, 2014

Happy (Belated) 7th Birthday Miracle Mason!

I will start with just a brief update on how Mason is doing and where we are at on treating his rejection.  5 days after his biopsy we got the results on his donor specific antibody blood work. The goods new is that one of the antibody types that had been strong back in June is now undetectable. The bummer is that he still has several others that remain strong, but at least they are not any worse than before. With those results the docs decided to taper him down over three weeks down to his regular maintenance dose of steroids (so for 2 days now he has been back on his regular dose). That being said, since he didn't have to continue on the extremely high doses of steroids for more than 5 days, I let him stay in school. Which has still been risky with him being extra immune suppressed, and it takes awhile to get the higher steroid doses out of his system, but he LOVES school! And, his Kindergarten teacher has been extra sensitive about germs, hand washing, and the importance of keeping him healthy. He only missed school one day, because he was feeling so crummy on all of the extra meds. 

Thursday I took him to transplant clinic for a checkup to make sure from a heart stand point that he is okay to have his back expansion surgery that is scheduled for next week on December 10. His echo and routine blood work looked good, so basically he remains asymptomatic from this chronic rejection (Which is great news!!!). With that, along with being back down to his lower steroid dose, the transplant team feels like going forward with his back surgery is just fine. We will stay in the hospital just one night and while we are there he will also get his next IVIg treatment. The other thing we did at clinic was an extra blood test called an immune-assay test. It will look at Mason's level of immune suppression. With the results (we will get them next week) the team will decide if they want to add another IV treatment called Retuximab to help conquer this chronic antibody rejection. If he is already too suppressed then they will hold off for a couple months, if not then we will probably start it a couple weeks after his rod expansion surgery. Lastly, as long as he stays healthy and asymptotic of this rejection then he will see the team once a month for clinic, continue his monthly IVIg, and re-biopsy in March or April (which is when his annual cath is anyways) to check the rejection.

Now for the fun stuff...

Happy Birthday to our Miracle Mason!
He turned 7 on Sunday November 30th!
We are so grateful for the blessings
 he has brought our family.
His love of life, sparkling smile, contagious laughter,
braveness, silliness, and kindness,
definitely brightens any room he enters!
We continue to be very thankful for Mason's donor family...
Because of them Mason celebrated yet another miracle birthday❤️!


Mason loves to have his picture taken....

 and loves to take 'selfies' too!!!
(I love finding his selfies on my phone!)

(Kaitlin and Mason)   

 (Braiden and Mason)

He's always ready for a silly picture!                                            

Mason absolutely loves school! 
He has definitely made a lot of friends.
When I dropped him off an hour late to school
the other day, because we'd been up to Primary's 
for an early morning transplant clinic, all the kids
 cheered when we walked in, "Yay Mason is here"!
It absolutely melted my heart!

This was at the school walk-a-thon. Mason was super
excited to participate it in, but when I got there to cheer 
him on and walk it with him, he suddenly was too tired to
walk (I actually think he was fine, the silly boy!)...
so I carried him for the last mile and 1/2! 
Next year I will for sure bring a stroller!

In October Mason had a great time on his first field 
trip of the year, to HeeHaw farms . I loved going too!
It was so great to do a 'normal child' thing with him!


I think his favorite thing  at the farm that day was 
laying down in a bed of dried corn kernels. (I will 
admit all I could think about were all the germs he 
was laying in, but I let him enjoy it!  I just bathed  him 
and put him in clean clothes as soon as we got home!)

On Mason's birthday he woke up to a room full of
 balloons and streamers, thanks to the Birthday Angel!

After church he was super excited to
 get home and open some birthday gifts!

That night we had cake and ice-cream with the Grandparents.

The bigger celebration came two days later...

Mason and his friends had a very special visit
from three fire fighter and there fire engine!
(Indeed Mason was in his fire fighter gear as well!)

Mason felt like the luckiest guy on Earth!

Mason and each kiddo even got a turn holding the fire hose!

A big shout out and thank you to our dear friend Paul and his crew!

Mason was showered with fun gifts from his friends!

What would a birthday party be without a piƱata right?!

The fire engine cake and a birthday wish completed a very fun party!

Mason actually ate a couple bites of cake too!
(Which is great for this little guy who 
still doesn't eat very much!)

This has been a great year for Mason, besides the reoccurring
and chronic mild rejection... he has been super healthy! 
He's had only a few hospital very short hospital stays which
is a record for us!! He's been able to enjoy more 'normal'
little boy things like tee ball, family vacations, and school!
And for that we are so extremely grateful for this year!
Mason brings so much sunshine and joy to our family...
We are certainly thankful to be part of his journey!

Mason is so loved and adored by his siblings,

absolutely loved and adored by Daddy,

and undoubtedly, very loved and adored by Mommy!

Dear Mason,
I love you so very much. I feel so blessed to be your mommy.Each day I thank our Heavenly Father for you and the miracles he has shown through you. I am certainly grateful he has allowed you to celebrate more birthdays than the doctors would have ever imagined. Thank you for your incredible strength and example. I love you to the moon and back... and more! Happy 7th Birthday!