"Lucky Ones"

Ryan has his PKU Clinic appointment yesterday and we discussed the idea of weaning him off his Phenex metabolic formula. We even touched on the possibility of being released from the practice. His phenylalanine levels have been within normal range for a person with mild hyperphe and he has been eating an unrestricted diet since this past summer. He continues to eat animal proteins although at times it is not much. Being he was not eating foods like chicken and meat for almost 4 years, he is just starting to acquire a liking to the taste and texture. When we met with his dietitian she said to us, "You are one of the lucky ones." Today we got the results of his latest blood work and his levels were great. She told us we can start taking the Phenex out of his daily diet. 
When Matt called tell me, it almost took my breath away.  My eyes welled with tears after we got off the phone. I quickly flashed back to the day we got the phone call and were told Ryan had PKU. The evening we had to bring him to the ER at five days old and the heart breaking feelings I had as I watched them try to draw tiny drops of blood from his newborn heel. The hours we spent learning about his diagnosis. The countless days we spent going to conferences and  researching new options. Numerous trips to different supermarkets for that one  item needed for a recipe I was experimenting with or trying to find new low protein food. The hours on end explaining and arguing with insurance companies to have his food and formula covered. The nights I spent awake and the anxiety I had thinking about his future.
If you had asked me almost 4years and 9 months ago if I ever thought we would be where we are today the answer would be no. Don't get me wrong. We know our son could and would have led a normal life as an individual with PKU. A life with some bumps in the road, but a healthy one at that. We thank G-d for the advances today that enable those with PKU to do so. We are so thankful for all the support, advice and help we had over the years from our friends, family and PKU community. 
One of the lucky ones indeed.