I'm so thankful for the internet because I belong to a 'support group' for moms of Doose kids. I was able to share my frustrations last night and received numerous responses with ideas and support. These are moms who are new like me and some who have been on this road for numerous years. They gave me a lot of insight as well as questions to ask the dietitian and our neurologist.
I'm going to ask for some blood work to be done on Monday to see if we can get a more accurate reading of his ketone levels. From everything I've read, getting the levels from urine samples is the most cost effective and convenient way - but not the most accurate. Running a lab is the most accurate way we have, but obviously we can't go and get a blood draw everyday. I think this will help us discover if perhaps his body is too ketotic.
I'm typing this and I don't really even know what it all means. The hard part of this journey is that each child is different. They each make their own path and we have to become detectives trying to figure out how everything is working together.
Talking with the other moms today has given me hope and insight. I'm anxious for Monday to come so that we can get in touch with Dr. Perry and our dietitian. We just need to keep holding on.
I love the scripture that's on the side bar because it says,
"Let the beloved of the Lord
rest secure in Him
for He shields him all day long
and the one the Lord loves rests on His shoulders."
It makes me angry sometimes when I think about how the seizures strike him in his sleep as he is so defenseless. But it gives me great peace knowing that God has him. Ben can rest secure in Him all day and all night and that means we can too.
Thank you for continuing to pray.