Update

Jack has had a lot of illness since September. He started with a ear infection and bronchitis that we ended up in ER with. Then a few weeks later bronchitis again. We then had yet another illness. He tested positive for the flu. It has not been a good start of the colder months for him. We went to the respiratory Doctor this past week and his asthma check was fair. He was feeling good so that was not the best results. Please keep him in your prayers. We are hoping this is the end of illness and not the start of a bad pattern for him. We are trying to get the asthma under control at this time.
 He also started biofeedback for his chronic pain. The biofeedback was a suggestion from the doctor in Cleveland. He started last week and we are hoping it helps.
 He is struggling in school in some areas. We are getting him tutoring for his main problem area of math. He is also dealing with a lot of mean children. Kids will be kids. However it upsets me that the school system does not teach much bullying prevention. I know the middle school does. In my opinion they need to start it younger. Jack is a big boy. They think this is because of a underlying condition. He had a bone age test and he is rating higher then he should. That suggests early puberty for some reason. That would contribute to his weight. It is just so hard for Jack. If it is not one thing it is another. I thank God Jack deals with things as well as he does. Please keep him in your prayers. Each day is a struggle in some way for him.

Cleveland Update

It has taken me a bit, but here is the update :) The Cleveland trip went well. Jack did well with the ride. We made it a nice weekend of fun for both of the kids after the appointment.

It was a pretty basic appointment. The doctor said again that he truly believes Jack has secondary mitochondrial disease and something else primary. He thinks and has seen primary diseases not manifest till adulthood. At this point it is primary mitochondrial disease because another primary disease has not been identified. We talked about Jack's pain and weight for the most part. It honestly is starting to get very frustrating. The last year and a half it seems all appointments are not very helpful. Jack is not better and he has had some downturns but over all dealing with the same main problems....pain...stomach issues...and his weight. I guess when your child has a disease with no cure or prognosis this is how it can be. I am thankful for how good Jack deals with his issues and I know he could be much worse. As a parent I still get very frustrated. Jack gets in pain and not much can be done for him. We do what we can and give all the 13 medications a day but it just doesn't feel like we are doing enough. I hate when he is in pain and I can do nothing. I also hate when teachers and some doctors minimize his condition because he doesn't express his pain or they are not seeing it. Please I welcome them to come to my home at night and see what goes on. 

Before I start venting a lot...I will say thank God for Jack...He is always happy and deals with his obstacles with a great attitude.

Psalm 9:10

10 Those who know your name will trust in you, for you, LORD, have never forsaken those who seek you.

Cleveland

We are heading to Cleveland on Friday. It is Jacks 9 month check up. We go over the last nine months. We will discuss things that worked and what is currently going on. The appointments can be very stressful for all of us, especially Jack. We are however looking forward to the weekend. We took this appointment and have turned it into a mini trip. We plan on taking the boys a few places this weekend and not heading home right away. Mitochondrial disease is present every day in everything we do. We don't even notice it as much. We have to pack the wheel chair, all the medication, the sunblock, bug spray, pain ointment, cooling vest, and the list goes on ...but to us it has all become a way of life. It gets annoying and inter-ups the flow of fun at times but Jack deals pretty well. 
Please Keep Jack in your prayers. It has been a rough few months for him. We are praying this appointment goes well and that he stays well and doesn't have his disease interrupt his fun.

Update

Jack is getting ready for summer vacation. He loves to swim. He has been taking lessons and swimming at grandma's.He still deals with pain weekly. Jack sees a pain management doctor. It has definitely helped some. The medication has made his tetney and pain decrease about 30%.


Jack disease is not in a down turn at this point so that is good. We take each day at a time. He still deals with his stomach issues among many other issues every day. We are just blessed that it is not a lot of the issues all at once at this time. Please keep Jack in your prayers. He has a Cleveland trip and specialist appointment coming up soon.

Jack is doing well for the most part in school. We had his cpse meeting for next year and it went pretty well. We are staying on top of all the safety concerns for Jack.
 Jack has a few appointments coming up soon. They are mainly all check ups. Jacks daily pain is still my main concern. I hate having my child in pain. Jack seems to deal well with all of it. 


We got most of Jack's lab results back and some tests are off but nothing too alarming. The doctors still search for a primary condition. Most of the doctors suspect his mitochondrial disease is secondary to another condition. The genetic doctor says she has seen things manifest once a child is much older. At this time it is just the confirmed mitochondrial disease. I honestly don't care what they call anything. I just want him to feel better. I want him to be like everyone else. He deals so well with all the restrictions and medications put on him. He is very happy. We have him in swimming trying to help with the unexplained weight gain. We monitor his calorie intake and his sugar levels are still in fluctuation. It is a daily battle and struggle.


Please keep Jack in your prayers. We believe in the power or prayer. Jack is a happy boy and a inspiration to me as his mother.

Cleveland Update

What a trip is all I can say. Jack started with stomach issues when we were getting ready to go. We did not know what to make of it since he has a lot of stomach problems anyway. We ended up having to stop 4 times on the way down. We had to clean the car one time and change all Jack's cloths. At the appointment he had to leave three times to get sick. The only good thing was that him being so ill was actually good for his blood work. The doctor ordered many tests. Jack had 13 vile of blood taken. He turned very pale and a light shade of green. He almost fainted and had to lay down. The car ride home was better. He was totally exhausted. We stopped to eat and he had nothing. He did not even want to drink anything. We felt so bad that we let him try to win a stuffed animal from a machine. Thank God he won. It made him smile. It was the highlight of the trip for him. He has not eaten at this point in all most 36 hours. I am trying to keep him hydrated. As it is if I followed doctors instruction to a tee I would take him to the hospital for IV fluids. I just don't want to put him through that unless absolutely necessary and he seems to be perking up.Please keep Jack in your prayers. We are praying for some answers and somethings to show up in all the blood work that was taken. We are also paying he is over the hump with the stomach thing and doesn't get dehydrated.