Just a few pics from the Cardinals' Championship Season. What a joy it is for Max to have this wonderful opportunity to play, albeit at his own pace, a sport he loves so much with friends that he loves equally!
A little pre-game strategizing
Ready, set....
.....go!
Post goal celebration
Pass...
Running his "heart" out
Champs, on and off the field!
Hoping that everyone had a great Turkey Day and wishing you an even better week!
As of late there has been so much and yet so little going on that I just haven’t posted – no excuse really I just haven’t had a clear moment to think about things. Too much rattling around in my head I guess….. My first priority has been getting us set for Hopkins. Although it feels like we just left I find myself in the middle of trying to hammer things out for our trip back the first week of December. This trip will be mostly post –op stuff (I can’t believe we are already six months out from that nightmare) but because we’re now up to more than seven specialists our week will be packed. It’s incredible to think that just four years ago we went to Hopkins to see one doctor, have one surgery, and be on our way. Since then we have learned so much about Max and his yet to be named syndrome that we are now seeing so many specialists it makes my head spin. Coordinating everything in one week seems like such an insurmountable feat, but thankfully everyone at Hopkins is so accommodating that somehow it all works out. We are fervently praying that everything will look so good that they’ll cut us loose for a bit and put us back on a once-a-year schedule. While I am counting on nothing, because Max is nothing if not surprising, it would be so nice logistically, financially, and emotionally to only have to make the trip once a year. Now I just have to convince the doctors that a summer schedule works much better for a bunch of thin blooded Arizonians!
In other news, Max is drawing to the end of another Fall football season. It has been especially sweet this time around to see him running down the field with less fatigue and difficulty. Thanks go out to Kids Playing for Kids for giving Max a chance to play and to Dr. Vricella, heart surgeon extraordinaire, for giving him the ability to play. Needless to say we have a lot to be thankful for this year!
Each player must accept the cards life deals him or her: but once they are in hand, he or she alone must decide how to play the cards in order to win the game.
Max was born with three major congenital defects, one of the heart (Tetralogy of Fallot and a dilated aorta), a connective tissue disorder, and Congenital Short Gut (which means he has only about half the intestine of a typical child). The majority of his first year of life was spent as an inpatient at Phoenix Children's Hospital and because of the extreme rarity of Max’s connective tissue disorder he now receives highly specialized care at Johns Hopkins Children's Center in Baltimore, MD. Max has overcome numerous major obstacles including 40+ surgeries and procedures to date, the first at just 7 days old and open-heart surgery at only six weeks old. Max has made progress that no one could have anticipated – no one except his parents and big sister who never once gave up hope!