We started the Ketogenic Diet...finally. Yesterday we began with a Keto. formula and breast feeding. This will be a process to find the right combination of fats because typically kids don't continue breast feeding on the diet. So I measure her ketone levels morning and night, and we will add fat to her diet (probably with olive oil) until we can get Reese into ketosis. Then we will add foods to her diet. So far it is really easy! She loves the formula--it smells like a rice crispies treat--not too bad.
Her seizures haven't been great but have been motivation for us to get the diet going and stay committed. She is averaging about 5 a day.
We had a scary day last week. We had to change all of her meds from liquids to pill form (because liquids contain carbs). In doing so, someone made a big mistake. Reese is currently taking 16 mg of Phenobarbital a day and in the transfer they prescribed her 90 mg. When I went to pick up the meds, the Pharmacist said, "So, you are increasing the Phenobarb?" "No, we are weaning it!" was my reply. Thank the Lord he said something! I would have gone home and given it to her! I got the doc on the phone and we straightened it out and got the dosage right. That was a close call--I had a stomach ache and was shaky for the rest of the day. Lesson learned--never trust anyone--double check all of your prescriptions.
So here's what God has been teaching me. It is so cool to me!
He is a mystery. So many of His ways are mysteries. I have always assumed that I should understand everything about Him and everything He asks of us. But He is teaching me that is not the case! That is what faith is about--trusting what is not seen and trusting Him even when things don't make sense. Reese is one of those obvious cases. It has been a process for me to understand why God would allow Reese to suffer when I know He loves her so much. Why would He allow her parents and loved ones to suffer while watching her suffer? I do know that God strengthens us through suffering. He refines us as we walk through the fire. But there is still a mystery as to why Reese, why us, why disabilities, why seizures, why pain? It is mysterious how we are truly able to find peace in the middle of distress. Only God could be behind that. He told us to trust Him and as we do, we find incredible peace that we would not have otherwise known, even without Reese. It is a mystery that we only experience when we trust Him.
He has also shown me the same truth in the areas of his plan for money and marriage.
I love it when God comes at me in themes. This week it has been His mysteries.