Meet Carter

Hello! Is there any body in there?

Yoo Hoo! …

Okay! Okay! I’m here! I’m Here! I just had to go away for a while. I don’t know why, wait I know why, or do I? but sometimes it’s hard to do. it’s hard to face. it’s hard to say. It’s hard to live. it’s hard. But it’s very selfish of me to be away so long…the next thing you know almost a whole month has passed since I talked to you all. I hope your still there, because I’ve got a lot to say, so even if you’re not there I’ll just blab away to anyone who will lend me a cyber ear (yes, I think I just wrote “Cyber Ear” I Googled it to see if I was the first ever…I wasn’t!)

So enough already let’s get to what you’re all here for…. Bronco’s Training Camp opened last Friday…kidding (we’ll get to that later)

Since we last talked we were just about to have the Premier Ventures Golf Tourney in which in Carter’s Honor they held their annual charity tourney for the National MPS Society and Carter’s and our’s favorite charity Hinotes Heroes. The Golf Tourney was a huge success and they were able to raise almost $9000. It was truely a special day for everyone in our family and we were especially excited because Deni’s dad, Dennis, her sister, Jess came all the way from Honolulu, HI for the tourney. And equally awesome was that her brother, Jim made it all the way from Iraq, where he just ended his third tour in the Middle East! It was a special time for Deni and for Carter (and for me, but especially for them) to have them here.

here are some photos from that special time…

We also were hosting the DKMS Americas Bone Marrow Bank and we were excited that they were able to send a rep, Michele, all the way from New York for the tourney as well as a Bone Marrow drive at the Children’s Hospital.  They were able to sign up 60 some Bone Marrow Donor’s during the trip and every new Donor counts I want to encourage you all once again to become a Bone Marrow Donor.  It is painless and easy to do. check out their site www.dkmsamericas.org .

Carter’s health has continued to be good. He has and continues to be a fighter. And continues to make it be known that he is a very special gift. He has officially gone international and even his story has reached “Down Under” Our last genetics doctor, Dr. Vanhove, told us that he has been reviewing Carter’s progress with some doctors in Australia that have been dealing with rare genetic blood disorders like Carter’s for about 30 years, which may not seem like a long time, but in Genetic Therapy that might as well be 100 years. These doctors are impressed with Carter and his ability to continue to buck the odds. We have been reassured about Carter’s weight and growth as well… for now! He still hasn’t broke the 14 lbs mark but has grown a few CMs since April.  He also continues to fight baby foods and we haven’t been able to get him to eat more than a few spoonfuls at a time. We had another swallow study done and we had to go back to square one on the whole feeding thing which is frustrating. We so want to get out of what we call “Ground Hog Day” (If you seen the movie you know what I mean, if you haven’t see… See it, it’s great!) It starts to feel like we have a perpetual 7month old, which can tire you out real quick…. I’m starting to bable aimlessly right now, it’s getting kinda late and I can probably use the rest… I’ll be back tomorrow with more updates   Stay Tuned..  Good Night!