Update

Jack had his appointment yesterday with his specialist here in Syracuse. We have not seen him since before Jacks surgery. He explained some more to us and answered some questions regarding the preliminary results. He is putting Jack on a vitamin cocktail to help in maintenance and prevention. He said some kids see results some do not. He said it would take 4 to 5 months before we would notice anything. He said if anything it is to help these kids when they crash or get sick. It helps boost there system so hopefully a illness or crash doesn't end up with hospitalization or turning into something worse quickly. We will see how he does. It will take a few days for the prescription to be ready. We could either get like 7 separate prescriptions that would be given 3 x a day, or combine them into one. He said either way it would be a fight he said they taste terrible. We went for the combining. There is only one pharmacy inside of university that does this. He isn't sure if my insurance will cover it we will see. If they don't we will deal with it. Jack needs it so we will see.

He also talked to us a lot about important care for Jack. Some we new some we didn't. He explained the seriousness over these kids with over heating. He also talked about his daily care, fatigue, crashing, sickness. He talked about prevention and seriousness of sickness and what we would do. He said Jack right now is looking good. He said to deal with things day to day and when problems arise. Respiratory, and stomach issues, and muscle pain is what we are dealing with now. He is seeing the necessary physicians and doing testing for those areas.

The doctor also explained the Complex 2 and 3 being uncommon and tried to explain the mitochondria again and the process. He also tried to explain how Jack's fat with in the mitochondrial is not processing correctly and how that works. All very complex and bottom line, there is no cure and prognosis. We are waiting for the specialist in Cleveland to meet with his colleagues at the end of this month regarding Jack. He said we will wait to see what testing they suggest to be done. He said we will then try to fight the insurance again, and he can write a letter. If they still will not pay we will see what we can do if anything. Hopefully the tests recommended will be able to be done in Syracuse. We will go back to formally see him in 4 months. He will call me regarding what steps are recommended next and we will do them. He did order some blood work and we will go from there.

My feeling was it was a good visit. It Made me even more aware about prevention of illness and injury for Jack. It made us realize the seriousness of caretakers with Jack and needing to educate them. It is frustrating because we cant just do something definite to make Jack better. I am very thankful for how well he is doing. I cant think about the future and what could happen, how bad he could get, how young he could die. I have to take each day as it comes and thank God he is doing as well as he is. He is a walking testimony already. I believe in faith he will live a long life and beat this and have such the testimony.

We are rejoicing that God blessed us with Jack. His spirit sick or not is wonderful. His personality and sense of humour amazing. His energy level amazing considering his condition. He is a inspiration to his family! Complain not, it could always be worse! Take life as it comes and cherish it and the many blessings. Be a light and a walking testimony for the Lord every day. Your reward will be great some day.

Jack is turning 3 tomorrow and we are rejoicing in his birth. We are having a big party for him Saturday due to his rough year. We look forward to making the next 3 days exciting and all about him. We will be thanking the Lord for him, all of him and I wouldn't change him for anything. Heal him, take the pain away yes, but never change his spirit. It is a precious, priceless, spirit!