Gabriels blood sugar levels are down and his ketone levels are up. Both are good things in our upside down little world. With his blood sugar’s down it means his brain is producing ketones (meaning the brain is burning fat).
We met with the nutritionist today. There were several pieces of good news. We are going to have a lot of support in creating menus. Each meal with be the same ratio and the same calories so we can have some flexibility as we are learning. Gabriel can drink as much water as he wants as well as sugar free, caffeine free drinks like vitamin water zero and crystal light. The approach is very much learn as you go. Keep trying new things until they work and track result. We have been in charge of measuring out and serving all of his meals while here. The reality that we are going to do this at home is a little overwhelming and not too bad at the same time.
He had several seizures today. One while they were trying to replace his IV line. After several tries they finally decided to wait for the transport team. The transport team on the people who work on patients in the helicopters and ambulances. They are the best of the best at getting lines started and had success with his line.
He has started having a new kind of seizure where he looses consciousness very quickly, falls to the ground and comes right back to consciousness. These are very scary because they are so fast. We are keeping eagle eyes on him right now. He has had 3 and each time he seems emotional and cries for about 30 minutes after them. His doctor said this is not uncommon because the diet change takes a huge toll on the body.
Whew!That was today on the roller coaster ride of our lives. I have to say that after 2 month of extreme dips, turns and loop the loops today has been more of kiddie coaster.