Wow! What a difference a couple days can make! Wednesday afternoon we were able to talk to one of our neurologists. Our opinion was that Evangeline needed to go back on a medication that she had been taking for a long time but had recently stopped. He agreed with our assessment immediately. We knew there was no guarantee that it would cause Evangeline to return to where she had been previously, but we had to try in order to reverse the downward trend she was experiencing.

On Wednesday afternoon we re-started the medicine. After sleeping most of the day Thursday, Evangeline has been a different child. Today she has started wiggling around again on her mat much like we were seeing a couple weeks ago. She hasn’t started being as verbal yet as she was, but perhaps that will come with time. We are so thankful that the doctor was on the same page with us and that taking the medication again has seemed to bring such a dramatic change. There may very well still be some ups and downs, but for now we praise God for this development!

Unfortunately Evangeline seems to be sliding downhill again. Her seizure activity has increased significantly over the past few weeks and she is less active and less verbal. We are responding with more aggressive respiratory therapies which seem to be helping. Our goal is to keep her respiratory function as high as possible in an attempt to avoid another hospital stay. We are consulting with our neurological team and hope to develop a plan moving forward as soon as possible.

One of the biggest frustrations with Evangeline’s situation is the constant ups and downs. We can never seem to arrive at a stable place. Less than 3 weeks ago she was laughing! The highs and lows are a challenge. However, we are confident that God has Evangeline in is His hands. Please pray that we can achieve more stable seizure control and pray for our family as we navigate this roller coaster ride.