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Happy 4th Birthday James!
 
That’s right – James turns 4 years old today… he is truly one of the most amazing kids I have ever met, and I am not just saying that because he’s our son (although admittedly I have a TON of bias in that statement J).  James is extremely caring, very smart with a huge vocabulary well beyond his years and simply loves life.  It’s not to say he doesn’t have his moments… I mean he is a four year old… but James is genuinely a great kid and I have no doubt will be just as amazing, compassionate and caring as he continues to get older.
 
Despite some of the challenges James is still facing we absolutely feel grateful and thankful and fortunate that we’re able to celebrate with him today.  He’s faced more adversity in the last 24 months than many of us experience in a lifetime.  As some of you may remember on James’ 2nd birthday a miracle truly happened.  We were celebrating James’ birthday with family, but without James, on the 11th floor at Lurie’s… singing happy birthday, eating cake and taking videos to show him back in his room where he remained on a breathing machine.  Well, he didn’t want to accept that and we had a call from his room during that party that James was ready to give it a go and breath on his own after nearly a month and a half with that machine keeping him alive… he was removed from the ventilator that day and has never seen it since.  That was the ultimate birthday present… hard to top that one.
 
It is hard not to make James’ life story about his illness and obstacles.  We really try to avoid falling into this trap, although it may not seem that way when you read these updates.  Part of the reason for that is we’re writing to keep everyone updated on James’ progress and hence it inherently comes out in these updates that way.  Day-to-day James lives his life just like any other kid… and with just as much energy, if not more, than most.  As anyone with kids his age knows, chasing him around is a full-time job.  He loves his cousins, aunts, uncles, grandparents, neighbors/friends etc. and REALLY loves his grandmas that care for him every day.  One really positive aspect of the past two years has been James developing an amazing bond and relationship with his grandmas.  That’s easy for me to say since they have basically given up their retirement and large chunks of their lives to help care for him but he wouldn’t change it for the world and looks forward to seeing them single every day.
 
We had a birthday celebration this past weekend in our front yard with immediate family and neighbors.  It was raining, but honestly, I think that made it even more fun for the kids…. A few pictures are attached below.  As you can see, James was in his element and told us many times the next day how much fun he had on his birthday weekend.  Per James, his favorite part of his birthday was "eating candy."
 

In terms of James’ health – things are about status quo.  Our next appointment is in about 10 days and we’re hoping to step down on his steroids at that time to inch back down to where we were a few months ago.  The doctors are really determined to find a way to get James off steroids… they know his current medication regiment isn’t good for him long term, but balancing that with what he needs right now makes it a very challenging balancing act.  We’re really hoping that James can handle further weaning of his steroids without issue and the next 2-3 months will be critical as we work through it.  Avoiding illness is really important as that’s one major factor in what flares up his immune system and causes these bouts of his GVHD rearing its head to occur.  Thank you again to everyone that keeps up with James' story, for your support, and always keeping James in your thoughts and prayers.  We don't say it often enough!
 
So, with that said – to my best friend… happy 4th Birthday.  I love you more than you’ll ever be able to understand and am the luckiest Dad on the planet to have you in my life.  I know your mom feels the same.  As promised, you can have Mike and Ike’s for breakfast and fried chicken for dinner (don’t judge, it’s his birthday).  Looking forward to what this next year brings and we’ll face any obstacles together, but 99% of the time life is going to be great so let’s enjoy it.  Love you buddy.