Sunday, July 29, 2012

Look Who's Walking!!!

Yes, it's actually Mason! 
He's finally walking.....
all by himself!

At age 4 years and 8 months 
Miracle Mason finally walks!

"Optimism is the faith that leads to Achievement.
Nothing can be done without hope and confidence."
~Helen Keller

If anyone is a perfect example of optimism it is Mason!
He may take his time, BUT he doesn't give up!

Most heart kiddos walk much sooner than Mason,but he had many things going on that held him back. First of all, in the important early months and years of development he was in heart failure (from 15 to 28months old). His body was in complete survival mode at that time. Learning to walk was definitely not a priority! On top of that he had pulmonary vein
stenosis going on (and still does), so his body functions off of only one lung, thus he tires easier that the rest of us with 2 lungs! After his heart transplant I thought for sure he would walk soon, but little did I know he would be on steroids for 18 months and the longer you are on them the more they weaken your muscles.  He finally came off of the nasty steroids last October, but he had a lot of muscle strengthening to do before he could walk. Then his scoliosis continued to worsen which brought us to the point of surgery a few months ago, in April. With all of that behind him, better balance due to his back surgery, lots of practice, and building of his confidence.....Mason walks!!! As I've always said, "Mason is on his own agenda in life!" But, at least when he wants something he doesn't give up, even if it takes him a long time to get it!

A bit of more positive news.....
Mason has continued to receive blood transfusions and IVIg treatments almost monthly since December because of the Parvo virus and finally at his last appointment with hematology (Monday July 23) his lab worked showed that his body is finally making new red blood cells again and at a good rate! He will probably still continue the IVIg treatments for a few more months just to be sure that the Parvo is completely gone, but at least we've seen some progress.

We did make it to the beach a couple weeks ago and 
had a GREAT time. I will post more pictures soon. 

Thanks for checking in on us! Hope you are having an enjoyable summer!

Friday, July 6, 2012

Hope and Strength

Right now (7:30 a.m. July 6) I am at Primary Children's Medical Center waiting for my pager from the cath lab to go off telling me Mason's heart biopsy is complete. Did I forget to tell you Mason had a biopsy today? NO, because unfortunately this was not a scheduled biopsy! Yesterday we came to cardiology - transplant clinic for a routine check up which I expected to go very well because Mason has been doing great. So, I was surprised when Dr. E told me there was a significant and concerning change on Mason's echo. Concerning enough that she scheduled him for a biopsy first thing this morning! His echo showed that the walls of Mason's heart were much thicker than his normal base line and usually when this has happened before he has had some rejection going on. Dr. E is assuming if he is in rejection it will be mild (HOPEFULLY) because he has no other symptoms of rejection right now.

As I sit here waiting I pray that everything goes smoothly in the cath lab and that if Mason is in rejection it is MILD and can be treated quickly and easily. Please say a few extra prayers and think lots of positive thoughts for my Miracle Mason this day!!

I've been meaning to post for a couple of weeks now. In fact I had thought out my entire post in my head while I was on a quite long run one day. To be more specific, this long run was June 23 while I ran the American Fork Canyon Half Marathon. It was my first run of this kind of distance since before Mason was born. His special heart and his life journey changed my life significantly. I have done a dozen half marathons and 3 full marathons in my past but with Mason joining our family those kinds of races (and the training required) were put on hold!  I continued to exercise for my sanity, but finding the time and strength to train for long distances was just not a possibility anymore (not with the kind of sleep Mason and I have always gotten!!).

In March I got the urge to run a half marathon again, but knew with Mason's back surgery coming up in April and an unknown amount of time in the hospital I probably shouldn't sign up and commit myself. After a good amount of time spent in the hospital with Mason during April and May ( 29 days as an inpatient.......meaning I was there too and not working out) I decided I still wanted to do it, but it was sold out! I thought, "probably for the best since my training had been pretty minimal". Although,  just for fun I tried to get the word out among our friends that if they knew anyone with a spot in the AF half marathon that wasn't going to run it after all that I would run in their place. Well, a couple friends pulled through for me so I could accomplish my goal (thanks Marnie and Boomer). I thought I was crazy but excited when a few days before the race I found out I was going to run it!

As I road the bus up the canyon at 4:30 a.m. that Saturday morning the butterflies in my stomach brought back many memories of my other races I had trained for and accomplished. It felt good to be doing something for me again! It had been a long time! Too long!

This half marathon turned out to be my favorite by far. Not because I had trained well and gotten a good night's rest (does 3 hours of sleep count???), because I certainly had not. It was my favorite because it was for a great cause, it was absolutely beautiful, I LOVED the quotes of motivation posted on big signs along the entire route, and because this time I finished a half marathon as the mom of Miracle Mason +4 more great kiddos

The theme of the race was "LIVE. SURVIVE. THRIVE. Support the fight against cancer". 100% of the race proceeds go to help people in our community pay for their cancer treatments. Even though I've been more personally affected by congenital heart disease, the trials that cancer brings to a family are so very similar (or any life threatening or changing disease for that matter) and it was so wonderful to see our community's amazing support of this fundraising event! While running I couldn't help but think how pertinent the theme was to Mason's heart disease and transplant journey. Mason's amazing fight to  still be here on earth definitely defines the theme LIVE SURVIVE THRIVE! While I ran I also named in my head all of our heart friends and those with other special needs (as well as their parents) who have fought so hard to LIVE SURVIVE & THRIVE! Thank you for your examples!!!

There were signs along the race path (I think about every 1/4 mile) that were messages dedicated to those who are fighting cancer, who have survived cancer, and who lost their lives battling cancer. Most were beautiful messages of HOPE and STRENGTH! I'm sure every runner received motivation from these signs as they began to feel tired and weary on their path to finish their goal. Even if you haven't been affected by cancer, heart disease, or another illness these messages of endurance can be related to any trial in life. 

One of my favorites was: "The task in front of you is NEVER greater than the strength within you!" This made me ponder back to the days when I had to decide to leave my family for an infinite amount of time to take Mason to Stanford and wait for a new heart. I realized with that experience I had a lot more strength within me than I could have ever fathomed! Although I was alone with Mason there I was never truly alone. I know my Father Above was there instilling in me the strength to do it and to move forward each day with our goal to save Mason's life. So please believe me, the task is NEVER greater than the  strength within you....... especially if you pray for help to increase your inner strength!

The quote that brought tears to my eyes and caused me to have to slow down and catch my breath was: "I'm running this for you Mom". It was after mile 9. I was feeling pretty fatigued and I had just finishing thinking to myself "why did I do this without training better?" And then came this sign! I read it and it was like I could here Mason's voice saying it to me. I began to cry! I thought, " NO Mason you've already run more marathons in the medical world than anyone in an entire lifetime should ever be expected to run. I'm running this one for YOU!!!" I was able to lose my fatigue by thinking of all that Mason has been through by enduring with HOPE and STRENGTH. I then thought, "I'm also running this for my family who has had to sacrifice so much, as they are also a big part of Mason's heart journey!"

I finished the 13.1 miles tired, but with a smile! I could still do it!!! It felt so good!!! And I had just been inspired by wonderful people and messages the entire way! I said to myself, "It's time to get outdoors and run more"! (Most of my running is on our basement treadmill. Just not the same as running outside in the fresh air!) I hope to do this half marathon again next year! I also hope Mason doesn't have anymore medical marathons or major surgeries for a very long time. He's inspired us enough already!

More importantly than a race, Mason and our family also had another great accomplishment recently. Mason is finally healthy enough to take to church, including primary (class time for the children). Last Sunday was his first time EVER in primary! He loved it. Of course I stayed with steps right?! But, he thoroughly enjoyed being with all the other children. And hopefully his biopsy will come out okay, because if he has to go back on steroids that will put a hold on going to church!

Mason also has enjoyed for the first time being able to truly spend time in the pool this summer. Still selective about what pools (no public pools of course.....thank goodness for neighbors and an aunt with a pool) and trying not to be splashed in the face or at least immerse his head (he's too pneumonia prone still) but he has loved it! He sits in his tube and kicks his way around the whole pool. All he wants to wear everyday all day is a swimsuit! 

So remember with much HOPE and STRENGTH you can accomplish many things!!!

(5:30 p.m July 6) I just got a call from the transplant team and they had GOOD news!! Mason's biopsy was pretty clean! He just has some possible very slight nonspecific antibody mediated rejection. But, not enough to need to go back on steroids. Yay! Dr. E is just going up a little on his anti rejection meds (celcept and prograf) dosages. I can handle this!!!! So with this GOOD news we are off to spend next week in Southern California at the we come sun and sand!