Doctor update

Jack went to see his specialist here last Thursday. It like many appointments was frustrating for me. Jack has his issues that are continually a struggle. Then there are areas that do not make sense or that pop up.
Jack has gained a lot of weight in the last year. What is even odder is that most children with his disease are under weight and grow slowly. That was Jack up till the last year. He was considered failure to strive because he was so under weight and his growth was so slow. In the last year he has gained 40 lbs. What is odd is due to the sugar issues we are on top of his diet. What is alarming to the doctor is if we as parents were over feeding him his growth would still be at a standard or slow rate. His growth has shot up along with he weight. He is in the 90% for his height and 80% for his weight. It is a huge jump in the last year. An abnormal shot up for any child. Even more weird for a child with his CONFIRMED disease. So we are looking down a normal road of the unknown for us. A lot of testing, x-rays, blood work in Jacks future. A lot of Daley logging and monitoring for me. Jack has primary mitochondrial disease complex 2 &3. It is a rare combination of a rare disease. Mitochondrial disease is more commonly secondary to another condition. Jack is primary because that is all they are AWARE that he has. If he is really secondary mito disease they have not found what is primary. If they ever find out anything else he might have it would be a rare primary condition. All the more common things have been ruled out. They are making leaps and bounds with mitochondrial disease. I have to believe in the Doctors and have faith in God. It will not change the fact that there is no cure or prognosis. That may well never change because it is genetic. However the more they learn a lot of the what ifs and whys maybe answered.

It is very frustrating for me. I cant fix this problem. I cant even give people or more importantly Jack many answers. All I can do is trust in God. Jack faces many struggles daily. His disease effects his whole family. It is not like taking care of a normal child. There is so much more to it. It gets to be a lot. It is hard to watch him be in pain or struggle with all different issues. It is hard watching things go on with him that make no sense at all. It is frustrating and stressful knowing more appointments, medication, money costs, and most importantly pain is in your child's future. Thank God for how he keeps us all going. Thank God for the strong spirit he blessed Jack with. Jack is a light to all that have the pleasure of knowing him. I am blessed to be Jack's mother. I am honored that God in trusted me with Jack and Noah.

Update

Jack is getting another cold. That is typical for him this time of year. October was a bad month for Jack. He had bronchitis and the flu. Thank God we never ended up in the hospital. We have started his asthma treatments every four hours. We have his breathing medication and an antibiotic refill on hand. We try like with everything with Jack to stay ahead of the game. That is not always easy to do.

Jack has been dealing with his stomach issues a lot lately. He is sensitive to smells again. He seems to be back to the daily dry heaving and throwing up. He has an appointment this week with his specialist here. I need to talk more about Jacks weight and sugar. Jack appears very bloated to me. He is not eating much and I am on top of his diet. He still seems to be gaining or bloating. I know his sugars still runs high at times. It is frustrating because with a lot of Jacks issues we just need to watch and see. We have to try to prevent things from happening and control what we can. It is when we cant control something, that we deal with the hospital or consequences. I guess that is the fear I have to deal with each day. I have to fight that fear as a parent and give it to God.

Jack's spirit as always is great. School is kicking his little butt. Academically he is doing well. He has had to deal with social issues and being different. He never wants to say when he is in pain. He has been dealing with it on a more regular bases lately. His arms have really been a new area of added pain.

Please keep Jack in your prayers this winter. All the prayers is what keep Jack and the family going.