Update

Jack is still in a downturn at this time. His respiratory issues are on the rise. He went to see his respiratory specialist. They changed some of his medications. He has had his yearly eye check recently. They said all the issues with his eyes that we are seeing are at this time disease related.

His sugar levels have been all over the board. His doctor here wants to see the log that we keep. He said due to Jacks disease he will not process sugar correctly. He said he would not treat him for diabetic symptoms unless he was having periods of levels in the 200 range. He said there is a diabetic condition with Jacks disease. He said it is rare and usually found in older children with mitochondrial disease. We will continue to monitor Jacks levels at this time. He is obviously showing signs of higher levels and could with age get this rare condition.

We are still waiting on the braces for Jack. They are making new ones since the other ones he couldn't even walk in. I know Jack could careless when they come in.

We are going to Cleveland soon to see Jacks specialist. Jacks specialist here is glad we are going. He wants us to discuss the downturn and high sugar levels with the specialist. It is a good time for him to be seen in Cleveland. He is also being seen by a pediatric gastric specialist, who deals with mitochondrial disease in Cleveland. We will have to stay over in Cleveland for this trip. I have a lot of medical records to put together for the doctors there. Hopefully they can shed some light on the sugar levels and gastric issues. I also would like to talk with them about this downturn. He is having more periods of not walking at all. The tetany episodes are up as well. He is complains of leg pain more then he ever has. He is taking several baths a day. He says the water helps with the leg pain.

Please keep jack in your prayers. He is having a rough time. Despite how he feels, he presses on. He is such a inspiration to all that have the pleasure of knowing him.