No News

Well, on Thursday it will be two weeks since Kate had her 24 hour EEG. We still haven't heard anything back yet. We changed doctors (yay!) and neurology practices right after the EEG so that might have something to do with why it's taking so long. They have to transfer over the records.

We are so grateful to have changed to a new neurologist! The other one wasn't bad but we just didn't establish a good rapport and didn't feel like she was one "our team". The Lord so kindly provided us with Dr. Wallace. David met her through a wedding he photographed last summer right when we first realized Kate was having seizures. She offered to see Kate then but we had just gotten in with the first doctor and decided to stay there. Well, David emailed Dr. Wallace right after Kate's 24 hour EEG just telling her things with Kate were bad and asking for any advice. She called him 15 minutes later and offered to see Kate the next Tuesday! Amazing! We really liked her at our visit and she spent well over an hour with us discussing our concerns. She did draw some blood work to test Kate for a number of different genetic disorders that could be causing her collection of symptoms (the developmental delays and some autism type behaviors). We are still waiting on those results too. I am very eager to get those.

Dr. Wallace also is having us change Kate over to a different seizure medication. She has been on the same one for the past 6 months and it seems to be causing some troubles. Kate has developed a lot of difficulty sleeping, and she has lost weight (so sad in a toddler!) It is going to take 8 weeks to get the new medicine (Lamictal) to the right level in her system and she has to stay on the Topamax for 7 of those weeks. So far the transition is going well although I am eager for her to be off the Topamax. The sleep issues we were having were getting to an intolerable level. We were all exhausted and Kate's behavior and mood had plummeted. She was crying a good part of the day and just seemed miserable. She couldn't fall asleep at night and then would wake up around 4am thinking it was time to get up. She would be up and down until 6 before crashing again. A dear and trusted friend who has children with many neurological issues suggested we put her on melatonin to help her sleep. It's naturally occurring in our bodies and sold as a "supplement" over the counter and many people with seizure disorders need to take it to help them sleep. It has been WONDERFUL! Within 10 minutes of giving it to her Kate lays down and goes to sleep. She has woken up at 6am both mornings we've given it to her but goes right back to sleep after we comfort her. The last two days she slept until 10am! She didn't nap today as a result so I'll wake her up tomorrow:) But we are grateful beyond words for her to be sleeping again.

Kate had her developmental screen last week as well (such an exhausting week!) She is behind in all areas of her development and will be getting therapy once a week for now with more possible later on. I'll save all that for another post though.

Ok, this is another heavily medical post but I know there are some who like to stay caught up:) I am mulling over a post about all that God is showing me and doing in me through this time but it just hasn't fully formed in my heart and mind yet. Thank you again for praying. I can never say that enough, truly.