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.

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 to much.