Tuesday, April 30, 2013

Four Years!

Aidyn just turned four! 

The first decorated cake I made for Aidyn
On April 14th we celebrated among family and enjoyed this special day. He has come so far! I am so glad we listened to our hearts and not what may have seemed logical to the doctors in Aidyn’s first days. 

Aidyn is a happy, bright preschooler who loves to play, learn and make new friends. He is very outgoing and greets just about anyone he passes by. The teachers and his peers really love him and miss him when he is sick at home. He makes doctor visits easy. He knows those visits are for his well being. He cooperates every time for the nurses when they need to take his vitals and measurements. The doctor’s love how easy it is for them to check his eyes, ears, nose and tummy. He says “ahh” before they ask and lifts his shirt for the exam. He stays still when they check his breathing and when they are listening to his heart. He answers all of their questions.  He is a model patient. Even when it time for labs, he barely moves when his arm is stuck with the needle. He watches closely as the blood moves from his arm to the tubes. When it’s all done he says, “See it didn't hurt, I didn't cry,” leaving the phlebotomists in awe and a smile, as he chatters away. One technician said he handles it a lot better than most adults. 

This is not the vision I had of Aidyn’s future four years ago. Because of the poor prognosis he was given and poor outlook on his life, I was expecting a child who would be dependent on machines and severely underdeveloped. Cognitively, Aidyn is probably beyond his years. He is in speech therapy for articulation issues, but he has come a long way since he’s been in school. He loves to talk. He is also in physical therapy once a week to make sure he is developed in all physical areas. He’s a tad behind because of his abdominal surgeries, but he is determined to do things on his own.

If this is your first time learning about Aidyn, for perspective, you could read about the details of Aidyn’s arrival and lack of faith all around us at the hospital when he fell ill there. In a nutshell, Aidyn was given a small percentage of hope to survive when he was just 4 days old. He had 90% - 95% of his small intestines removed and given a central line to nourish him directly through his veins using TPN

Five days old, one day after surgery, resting in the NICU.
We were given the option several times to let him go. It was not a possibility for us. And when we made it clear we wanted to keep the machines on, we were told Aidyn would have a low quality of life if he survived. Aidyn proved his initial doctors wrong and survived. He surpassed even our expectations, as we thought he would need a small intestine and liver transplant, but he has survived without it. Aidyn has been able to live a good quality life. He has his ups and downs, but he is a fighter and does it all. He has not been dependent on machines to nourish him since the age of two and he eats without a feeding tube (never had one, either). He defied all odds! I love saying that. He is our hero and teacher. We love him more each day.

Another blog entry coming very soon!