EEG Results

2/4/09 UPDATE
Hey there - we got some unnoficial results from the test. It is not bad news but I wouldn't put in great news category either.
We're meeting with Dr. Kornblum (neurologist) on Monday so we'll have more info then but here is a quick summary.
It looks looks about the same as last time, maybe better. There were no seizures, but there are still significant abnormalities that are on both sides.
We don't fully understand what this all means and during our appointment I'm sure we'll talk more about next steps.

The good news is, she is doing really well developmentally. By this I mean, that even though she is behind, there is definite progress week to week. And she has the cutest smile :)
Hugs,
Erin

PREVIOUS MESSAGE
She did really well during the EEG and based on what the technician said she may have a normal reading. We are still a little concerned because she has a slight tremor in her hands and feet. So far no one knows why.

Her blood pressure is still high (120/70) which is 90% for babies. So it has come down significantly but still needs to be lower. The Amlodipine does not seem to do much for her but we are still giving it to her twice a day.

On Feb 9th we have a Nerology appt and on the 10th we have a Cardiology appt. So we'll know a lot more after those visits.

For her 6 month check up (yesterday) she is doing great and only a little bit behind developmentally. She is not sitting up by herself yet or doing much rolling. Her OT says she is progressing and will hit those milestones soon.

Here's a photo of Conrad and Andrea. Even though attaching the leads is a bit traumatic, Marleigh has decided not to hold it against them.

Marleigh's Latest EEG

Cute Laughing Mar

Happy New Year, Happy News

We hope that everyone had a lovely New Years Eve. We spend the evening with our very good freinds, just a few blocks from our house. We had a terrific dinner and played silly board games and even had a little champagne!



On January 13th we gave marleigh her last shot of ACTH. In the movie businesss when you film the last shot of themovie the Martini Shot. We celebrated just long enough to not jinx it. She's been seizure free and we are hoping it stays that way.



Now the plan is to keep an eye on her and potentially start to decrease the other anti-seizure medication. We'll be doing another EEG in a few weeks to see if the ACTH helped to normalize her brain waves. In the meantime we are dealing with her high blood pressure. She is now on Amlodipine 2x a day as of her Wednesday appointment it is finally down to an acceptable level. We have a follow-up appointment with the cardiologist in February. If all goes well, then her heart will start to loose the excess thickness and return to normal.



She is meeting twice a week with infant development specialists. Here is a photo of her with Lindsey, her OT. We are excited because she is doing much better supporting her head and reaching for toys. Just this week she started banging toys on her tray and even rolled from her tummy to her back!! We are soo excited about her progress! And so is she ;)