Well, it has been way too long since there has been an update for Jason. I guess that is a good thing because we have been so busy living our lives. Jason is now 5 and in preschool, he loves going to school with his teacher and friends. We have been busy doing all the things since my last update. Jason played his first year of tee ball, we made many trips to the zoo and aquarium, and we made a few trips to the cabin. Jason loves snakes and reptiles, as well as all animals. He is very imaginative and constructs worlds for his toy animals. He also loves to make up stories and will often tell us about the “rattlesnake ripsaw catfish”. He also has a like/love relationship with his younger brother who will be 2 in April. Jason also became a big cousin when his aunt had the first girl in the family, and he couldn’t wait to hold her.

Jason had to have his tonsils and adenoids removed in August of last year which gave us a little scare because of the risk of PTLD (a form of lymphoma caused by his anti-rejection medication). Luckily there were no signs of abnormal cells in his tonsils, and he is sleeping much better and quieter. He also had multiple ear infections last year and got ear tubes placed. He still has his g tube which we put 2 Liters of water in daily. We are working on encouraging him to drink more water by mouth so the g tube can eventually come out, and we can get a dog like daddy promised. We are pretty far away from that though since he maybe drinks 1/4 of the fluids, he needs by mouth. Hopefully in the next year we can work on it and get him drinking more. The g tube has been a blessing when has been sick though (preschool has brought us quite a bit of illness), and it doesn’t bother him too much, so we are ok to keep it in as long as he needs it.

Jason continues to challenge us with his strong will and determination, but I wouldn’t have it any other way. He is our little fighter. We thank everyone who has donated to COTA in honor of Jason. COTA funds help our family immensely, especially since the only hospital that treats heart transplant patients in our state dropped our health insurance, so we are now out of network. We have to apply for exceptions to see any providers at our current hospital, so we have switched many of his specialties to other facilities. We are now at the mercy of the insurance company and if not approved to be seen we may have to travel out of state. We appreciate all of the support, and I will try to update more often. We hope and pray that health and happiness continue to bless everyone.

Kristen