Meet Carter

It’s hard to believe that 366 days ago today our little Boo, had just under went his bone marrow transplant. At that time, we as a family weren’t sure what to expect. Would it help him feel better? Make him feel worse? Make us feel better or worse?  Well now that we can almost safely say that he has come through the procedure with flying colors, it’s unfortunate that we still really aren’t sure if any of those questions have been answered. Considering his condition and that the BMT was not a “Cure” we now live in the world of “Day To Day” where we try to just enjoy him as much as possible. He continues to make the doctors happy about his progress, which mainly is the lack of digress. He hovers around the 15 lb mark right now and we are currently now taking steps with our Endocrine Doctors on why his growth isn’t been better. Another major issue of children with metabolic diseases is the slow growth, but his is almost non-existent. We recently just took a test that will hopefully help us answer this question and maybe look at introducting a human growth hormone treatment. So the past year, Carter has been on steroid and now possibly HGH, he is really getting ready for the a career in Baseball!

As we look back on the the past year, if I could sum it up in one word…Extremes! We have had a year of from one extreme to the other. Whether it’s a good extreme to a bad extreme to a high extreme to a low extreme there has been a lot of ups and downs. Luckily as I look back more ups than downs, but the extreme of the ups and downs are trying. Because once you are up… you almost expect a down and then getting back up again, well, is like going up a hill…exhausting, but rewarding.

We want to take a minute to also tell everyone out there that has helped us get through this year…. THANK YOU!  From the Super Bowl and Golf Benefit to reaching out to us when we were in the hospital to the people that sent us dinners, to the people that have helped us get away for a couple of days. to the people that have read this blog and of course the families that have children effected with i-cell disease who have reached out to us to let us know we are not alone and that we have helped them by letting them “meetcarter”.   I could probably list 100’s of people, but I don’t want to forget anybody… so please, you know who you are and if you  could just take a moment and really just, I don’t know pat yourself on the back, or reach over and hug your better half or child for me and know that hug is from us. We are so grateful for our network of friends and family and what you mean to us is the world. We are sorry if we can’t always be at your events, or your get togethers, and that we might not have the time to reach out as much as we used to, but please know that we will always be here for you! WE LOVE YOU ALL!  So please enjoy some more pictures of our Carter over the past few months that we have collected.  Have a great week and will talk to you all sooner than later.