Update

It has been a while since I have updated the blog. Computer issues among other things. It is never a dull moment around here.

Jack is doing OK. He has been having some very frequent tremors and fatigue is definitely up. His stomach seems to be getting a bit better. The upping of the medications seems to be helping at this point. The allergy testing came back. He has no allergies. They think (allergist, Ent, and pulmonary DR) that jack has sinus disease. This too due to the the mitochondrial disease. Low tone, and all the muscle issues causing this. They are trying some antibiotic treatment, and sinus flushing for now. A CT scan in the summer will be the next step. He has been exposed to so much radiation at this point that we are waiting. His asthma has gotten a bit better since the pneumonia has passed. He is still having the tetany, but it has gone down a bit. Definitely need to get back to the eye doctor. We are still having current issues there. All and all a OK week.

We are going Tuesday to Rochester to see a genetic specialist for some testing. This is regarding the added diagnosis. Some of the DR's are in agreement and some just say it is the mitochondrial disease. We will see from this testing. The Enlos/Danlos diagnosis can be something that needs to be watched closely so we want to be sure he has this.

Praise be to God. Jack has been sleeping a little better. Every day is full of obstacles and frustration but we just give the glory to the Lord.