Kiptyn - Apple Pick of the Month
Kiptyn Green is an 11-year-old boy from Burnet and Rosenberg Texas who is a force to be reckoned with. He is a fighter!
Kiptyn is the 5th son out of 6 boys in his family. After I was on bed rest 10 weeks, Kiptyn was born on September 21, 2009 and we hit the ground running. He was born with a bi-lateral cleft lip and palate; he stopped breathing shortly after birth and was rushed into the nursey where doctors stabilized him. They called in the NICU team and soon he was transferred to downtown Austin. They told us to call in all of our family because he would not live through the night, then if he lived through the night he would not live through the week; if he lived the week he would not live through the month.
What a roller coaster ride it was for those first weeks. At three weeks old Kiptyn had a G-tube put in. At first the doctors diagnosed him with Trisomy 13, but with further testing they ruled that out and diagnosed him with Langer-Giedion syndrome. It is very rare. His hearing was tested and I was so heart broken when we were told he was deaf, but we started learning sign language early on so we could communicate with him. We went home for the first time after four weeks in NICU.
After being home for two weeks, Kiptyn had a doctor appointment to start the repair of his cleft lip and palate. When the doctor put lidocaine down his throat, Kiptyn aspirated on it. Three hours later we were air lifted to Dell Children’s and admitted for aspiration pneumonia. They told us he would be there for four to five days; 45 days later we finally came home again.
When we came home our amazing friends and family had his room all set up in our living room. We came home with a team of home health nurse and supplies, and we had to start getting used to our new normal. We have grown a lot as a family and team over the years. We have an amazing team of nurses who are proactive in Kiptyn’s care. We are almost 12 years into it and now and he is only on the vent when he is asleep. He has had countless surgeries including surgeries to repair the cleft palate and lip.
The Monday following the admission at Dell Children’s, Kiptyn went into surgery to place his trach. Two weeks later he went on a vent and he was diagnosed with central apnea. Kiptyn was on a vent for 24 hours a day 7 days a week until he was 3 years old. I will never forget the day they brought his home ventilator into the room. I cried because the vent was huge and I looked at them and said, "How are we supposed to take him camping?" Camping is a huge deal to our family. Today, Kiptyn loves to go camping and swimming! He sits in a float with us nearby, and he once asked if I would buy him goggles. We have never limited him, there are just some things we have to do differently. Kiptyn is writing his own story. He is very aware of his trach and g-tube, however, it doesn’t stop him from living his full life.
Kiptyn’s favorite things are his family. He loves playing with his brothers and playing jokes on people, he is our little prankster. He loves to do TikTok and watch other videos on the app. He loves dinosaurs, and the amount of times he has seen Jurassic World are infinity and beyond. He also loves going to the movies, his weekly trips to target, McDonalds and animals of all kinds. At the top of his list are tigers, Komodo dragons and owls. Kiptyn also loves his dogs!
When planning outings there are extra things we have to take into consideration. We can’t just jump in the car and go on a road trip, and Kiptyn isn’t able to go to his Papa’s house and stay the night as easily. We have to consider nursing, supplies, and equipment for everywhere we go. Our schedule does revolve around his nursing schedule.
Kiptyn also has challenges with school and being completely homebound. Learning to write has been a challenge for him due to his bone structure, however he has persevered through. We also think that he deals with a great deal of pain though he still has a smile on his face.
Kiptyn amazes us every day. Every morning when I get up, he runs and jumps into my arms and tells me "good morning Mommy" and asks if I slept well. His joy is in the little things. He has shown so much growth, never allowing his disabilities to limit him. He has a huge compassion for others when he notices that they are hurting. He never likes to see someone upset and is willing to do whatever he can to help: provide a hug, tell you he loves you, or provide a band-aid if you are bleeding. His hugs are healing!
I have never questioned why. I have always been grateful that God choose us to be his parents. Yes, we hit the ground running and haven’t stopped. I have always been his voice and we have fought hard for him. I do believe this is one of the reasons he is where he is today. We have grown so much as a family. When I was told he was deaf I said, "How will he know I love him?" From that day on I knew I had to make him feel my love for him, and it was the first sign we learned. Kiptyn is loved by so many. He leaves a lasting impression on your heart. When I have a bad day he comes and gives me a hug and it melts it all way.
Kiptyn is our hero!! He has taught me so much. He’s the brightest of lights even on the darkest days.