We finally got to see Santa this weekend. We attended the DSG Christmas Party in Leawood this weekend. I must say it was a HUGE success. We had never attended before and am GRATEFUL that we did.
The story? I debated whether we where going to go, it was so cold and I needed to go to my sisters to help with a Christmas project. I decided we had RSVP’d already and it was a free photo and we could see some of our T21 friends.
We got to see Santa and got some goodies. Hallmark donates a bunch of stuff from their warehouse and we got to rummage through and take what we wanted. Tucker will be having a dinosaur birthday party next year—thank you! Anyway, to get to the good part of the day. We filled our plates for breakfast and sat on the floor as all the tables were full when a lady came over and told me she made room at their table for us, please come and join them. I declined insisting we were fine where we were, NO NO, please come sit. As we got up and started moving over I had told Hunter to take Tucker, the lady (Mrs. Knipp) heard me say Tucker’s name and asked, “ Is this Tucker?” I said yes and she proceeded to go into the fact that we should have met already that she was …(I don’t remember her first name but her last name stuck….) Amy Allison, director of the DSG had given me her email address some time ago in regard to a doctor in Boston that did her sons heart surgery. AND HERE SHE WAS offering us part of her table. We chatted the rest of the time. Her son, Will, is 2 years old, born with Hypo plastic Right heart syndrome, the opposite side of Tuckers. She said that she could only find her son and Tucker born in the KC area with this defect in a T21 kiddo. Will had heart surgery, A WHOLE HEART REPAIR, a year ago in May. He has a whole heart now. Saturation's run at 98-100%, he is pink, and is no longer a “heart” baby. He will live as long as he can without a heart issue. He may or may not sometime down the road need a valve replaced but that is nothing. They no longer have to worry about whether he will be here 1 year or 10 months….no longer are his days numbered.
I have to do some research myself. She was sending me the email address to this doctor so I can ask for an opinion on Tucker. I will have to have copies of his records sent…but OMG can you imagine…a whole heart. It can be fixed and grow again…give my son the life he deserves.
By the end of our conversation, I was in tears….who wouldn’t be. I am just so scared and amazed that it could even be possibly true….Tucker’s heart be fixed without a transplant. He could have his OWN heart, fixed, beating, growing, working correctly. What a gift…..I have lots of stuff to do!
Birthday Number Twelve
5 weeks ago