"spells"...

Hey Friends,

We finally saw Evie's neurologist this past Thursday, the results were a mix of good and bad.

The neurologist is "fairly certain" that these spells Evie is having are seizures. They get worse when she's sick, better when we up her seizure meds so that would lead us to believe they are seizures.

Evie's EEG the morning after her day of seizures on the 23rd was actually not normal. The hospitalist told us that it was "normal for Evie" yet her neurologist said they were comparing it to the EEGs that she had during the first months of her life when her EEGs were anything but normal. She is having some "spikes" and "abnormal brain activity." Not great. We are scheduling a follow up EEG to make sure we're not missing anything.

My main question was why these seizures are causing Evie to stop breathing. Her neurologist said that seizures can cause shallow breathing or delayed breathing, but she shouldn't desaturate as quickly as she has been. She thinks it could be a heart/lung problem so we see her pulmonologist on the 21st of Feb.

The only good news from our appointment is that Evie's condition in general isn't declining. She isn't "getting worse" overall. If all of her body systems were declining we would have a problem, but in every other area she is improving so hopefully this just means she needs more of her seizure med.

I'm a little unsettled. I hope her heart and lungs are okay. We will see on the 21st.

Thanks for praying for us (: Evie is a light in our life and we are blessed to share her with you.