It has been a long time since I have posted a blog. Jack has been in a downturn. He is just starting to seem to be coming out of it in some ways.
We went to Cleveland and they are wanting us to try a daily pain medication. He has not started it yet. We were waiting for some tests to be done first. He is still experiencing the tetany episodes. He complains more frequently of leg pain and recently saying his arms hurt. His sleep is still off. He wakes at night quite a bit. He is going next week for a sleep study. His stomach issues seem to be calming down a bit. We saw a stomach specialist in Cleveland . He deals with a lot of mitochondrial disease patients. He said that Jack is experiencing a lot of stomach issues due to the disease. We are trying some over the counter things for it along with his prescriptions. His sugar levels are still high at certain times. We are monitoring that at this time. He has some fasting labs he needs to do. The blood he had taken and testing from Cleveland came back last week. The tests were abnormal and his vitamin D levels were still low. He takes 1200 IU of vitamin D a day as it is. We are seeing the specialist here soon and will see what he suggests.

School is coming to a end soon. Jack will be in summer program so he can get his PT, OT and Speech services through the summer. I am waiting to see when his cpse meeting is in regards to kindergarten. I have many concerns that need to be addressed. Please keep this meeting in your prayers.

As far as Jacks spirit, it is strong. He always has a good attitude about his disease. He is currently using some new bracing in his shoes. They seem to be helping with the way he walks. He is doing okay with them. His behavior has been a bit off. I am not sure if it is the age or what. We will just keep it in our prayers.

There have been a lot of positive changes in the last few months for me and the boys. We thank God for them all. We will Trust in the Lord and go one day at a time.