Good news, good news and more good news...
It has been a very busy week. On Monday, the physical therapist came over to evaluate Sophie (our parent educator referred us to the Missouri First Steps program which helps children from birth - 3 years). The therapist said that Sophie would not qualify for the program because she is not lacking more than 50% in development. Yeah - good news!!! But, Sophie is still able to participate in the program because of her seizure disorder.

On Monday afternoon, I took Sophie to see her pediatrician. Over the weekend, Sophie was sooooo crabby and whined all day long. On Monday morning, I noticed she was scratching at her ear a lot so I thought she might have an ear infection. When her pediatrician examined her, her ears, nose and throat all looked great. She said Sophie was teething and sometimes when the tooth is coming in it hits a nerve causing a shooting pain from your mouth up to your ear. So we gave her tylenol and she has been fine ever since. Yeah - good news!!!

Today, we took Sophie to see the neurologist for another EEG. The results showed that Sophie no longer had hypsarrhythmia (chaotic brain activity)!!! Yeah - GREAT NEWS!!! Her EEG is still slightly abnormal, though. She no longer has areas of suppression but still shows areas of drowsiness. Her background rhythm occasionally is a 5 or 6 but not as much as her neuro would like to see. Also, her left and right side of the brain is working together a lot better. With this information, the neurologist decided not to switch to prednisone. We are going to keep her on ACTH but start the weaning process (60 units for 4 days, 40 units for 5 days, 20 units for 5 days, and 20 units every other day for 10 days). This weaning process is very important. If Sophie's seizure activity does not increase and if her brain activity keeps normalizing during the weaning process, then it means her body does not need the steroid to stay this way. So now we wait and pray that she does okay with the weaning process.

By the way, Sophie had a wonderful day today. Usually, the EEG wears her out, but today she was so incredibly happy and vocal. We met with the doctor after the EEG and she kept making these long, drawn out yelling noises. Brandon said she sounded like one of those flying dinosaurs (teradactyl???). It was hilarious. She kept smiling at the doctor and just wanted to explore his whole office. Actually, she was in an exploratory mood the entire day. She sat up so well and was reaching for all her toys around her. She is really starting to stretch those arms and look beyond than what is just in front of her. Today is the best day she has ever had!!! My heart is filled with so much joy and hope right now!!!