Miracle Mason: Doing the Dance

Wednesday, September 29, 2010

Doing the Dance

Today we can all do the "Celebrating Zero Dance"!! Mason got a big fat wonderful "0" on Monday's biopsy. That would be his third zero in a row!! Hooray, hooray!! And this biopsy was the best he's had yet. Even with his other zeros he still showed small suspicion of AMR (antibody mediated rejection), but not this time. There was absolutely no AMR suspicion at all! This is so GREAT.

After Dr. E (Mason's Dr here at Primary's) spoke with Dr B at Stanford we were also given the best news yet......Mason can come down one whole step on the Prednisone (steroid) weaning scale and also down on his Cyclosporine a little. Hopefully this will help him feel a little less 'steroid induced grumpy'!!!

We love good news!!! Do a little dance for Miracle Mason today to help us celebrate!!

"There are two ways to live your life-one is though nothing is a miracle, the other is though everything is a miracle." ~Albert Enstein

11 comments:

Reynolds Family said...: Yay for Mason! Good news is so wonderful!; September 29, 2010 at 1:03 PM
sheila said...: Terrific news for Mason!!; September 29, 2010 at 2:36 PM
Unknown said...: I am doing a dance for Mason as well!!; September 29, 2010 at 4:30 PM
Jennifer said...: Yay!!!!! :) Such great news!

p.s. my cousins baby Asher could use thoughts and prayers. He just had his 2nd heart surgery.

There's a link to his blog from mine.; September 29, 2010 at 8:31 PM
travis and shalee said...: yay!!!! we are SO HAPPY to hear this great news!!! :); September 30, 2010 at 9:16 AM
Mindi D said...: That is such great news! Thanks for sharing :); September 30, 2010 at 10:12 AM
The mom of 4 monkeys! said...: F A B U L O U S
W O N D E R F U L
G R E A T; September 30, 2010 at 10:33 AM
Sam Anderson said...: YAY! thats awesome!! =); September 30, 2010 at 12:38 PM
Jeff and Andee said...: Yeah!! Congrats! So great to hear!; September 30, 2010 at 1:19 PM
madelyn said...: Fabulous news - one more step forward! Praying for continued good news, insurance coverage, less grumpy days, and abundant blessings.; October 4, 2010 at 7:13 AM
Ella F. said...: Terrific news. Thanks for the great update. Love to you!; October 4, 2010 at 9:19 PM

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Mason Andrew Strickland was born on November 30, 2007! He came 3 weeks early at the American Fork Hospital, weighing in at 5 lbs 8 oz . He is the baby brother to 3 brothers and 1 sister. At 3 days old he became very sick at home. After a trip by LifeFlight to Primary Children's Hospital that afternoon he was diagnosed with a variation of Hypoplastic Left Heart Syndrome. Mason will need at least 3 open heart surgeries before he is 3 years old. He had his first surgery when he was 10 days old and spent 7 weeks in the hospital. He had his 2nd surgery at 6 months old and only spent 1 1/2 weeks in the hospital. Mason also has issues with arythmias which has caused him some scary moments, a 2nd trip by Life Flight, and more time back at Primary's PICU. We feel blessed for everyday we have him here with us. We have created this blog to follow our journey through life with our little broken hearted baby, Miracle Mason (with a few tid bits about the rest of the family too).

It's now October 3, 2009 and Mason's story needs be updated. In April 2009 Mason was diagnosed with lowered heart function (or heart failure). From April through now he has been on medications and oxygen to help improve his heart function. In August, with no improvement seen in his echos we began the process to list him for a heart transplant. He is unable to get the 3rd surgery (or Fontan) as planned because of his heart failure. On Sept, 3, 2009 he had his pre-transplant Heart Cath (the last thing needed to list him for a new heart). The results that day have left us heart broken. He was diagnosed with severe pulmonary vein stenosis and is unable to receive a heart transplant. He will now need a heart-lung transplant, if he is a viable candidate. Since Primary's does not have a heart-lung program we are seeking opinions from other hospitals (outside of Utah) at this time. Even though we are extremely saddened with his most recent diagnosis, we continue to find joy in our journey with our special child of God, our sweet Mason.

(In November 2009 we learned of another possible option for Mason. CHOP and Stanford have both talked to us about doing just a heart transplant to his own one healthy lung. At this time we are exploring that option and the possibility of it being another true miracle for "Miracle Mason".)

February 16, 2010 Mason and I (Mom) flew to Palo Alto, California to do a few last tests and get Mason listed for a new heart(heart only!! not heart-lung!!) at Lucille Packard Children's Hospital at Stanford. We are excited and nervous to start this new chapter of our journey.

March 3, 2010 Mason was officially listed on the Heart Transplant waiting list as a 1B status. Mason and I will wait here in Palo Alto until he receives the miraculous gift of a new heart. We miss our family at home very much!

April 4, 2010 (Easter morning) Mason received his new heart. It was the best Easter gift our family could ever be given. We are eternally grateful to his donor family who during their time of loss selflessly gave our Mason a second chance at life.

July 16, 2010 Mason and Mom flew home to Utah to reunite with their family. Mason is still very immunosuppressed in order to avoid rejection of his new heart, but definitely happy to be home playing w/ his brothers and sister!!

January 30, 2012 Mason continues to do well with his new heart. He finally came off of steroids after 18 months in October 2011! Mason is walking with the help of a walker in hopes to walk alone soon. He conitues to have a few episodes of a pneumonia each year, probably due to only having one working lung. He also has a few new issues we are facing .....sleep apnea and severe scoliosis. But, over all he continues to face life with a fight and a big smile!

April 11, 2012 Mason had back surgery because his scoliosis had worsened to a curve of 75% (normal is 0-15%). He had two rods placed in his back, better known as the VEPTR (Vertical Expandable Prosthetic Titanium Rib). It was a rough recovery, but after about 8 weeks he was feeling much better. Every 6 months he will go in for a minor surgery to extend the rods to keep up with his growth.

May 25, 2012 We finally got into a sleep doctor and she diagnosed Mason with sleep hypoxia, rather than actual apnea. Because of narrow airways his sats dip frequently through out the night, but he doesn't completely stop breathing (good news!). So he was perscribed to be on one liter of oxygen at night while asleep.

July 20, 2012 Mason finally walks all on his own!!

Not a day goes by that we don't think about Mason's donor family who has given our little miracle boy the gift of LIFE! Thank you where ever you are!