Sunday, April 19, 2009

24 hours

We met with A's neurologist last week. Nothing really good or bad came out of the check up. She says the eeg is still showing seizures and there still seems to be more of a focus on the left side. Our next step is to schedule a 24 hour video eeg......24 Hour video eeg...that spells FUN!

The doctor is hoping that this will maybe provide more solid data on where the focus is for the seizures. Then we can make more educated decisions as to maybe referring Abigail to a surgery specialist so they can run more in depth testing with newer imaging technologies. This does not mean we would do surgery but it would allow us to have the deeper testing done. Its any ones guess at this point as to what the heck is going on. Sometime I just feel like we are playing darts...and I suck at darts.

As far as the diet goes... Abigail is doing great. When we lowered the calories to 1170 a day she now eats with little to no issues. I guess you really can live on sausage and cream! All of Abigail's teachers regularly comment on how much more focused she is. Katy, her nanny, regularly comments about how happy and goofy Abigail is. Even though we see 1 to 2 seizures a day she is continuing to improve and develop at a normal rate, she is even catching up in some areas. Her words are clearer and there are more of them. She can swear in context now. I would take the blame for that last one but maybe her birth father was a sailor.....we will never know....actually one of Abigail's favorite songs is the "Pirate Ship" song........hmmmmm interesting.

Abigail has discovered "Flair"...not just a little "Flair" but a lot of "Flair", and she like to flaunt her "Flair". I have pictures that I need to download from the camera and will do so soon. She is often caught wearing 3-4 necklaces and as many bracelets on her wrists and ankles as possible.

Thursday, April 9, 2009

Geezz




Abigail did great at the appointment. She let them stick all the wires to her head and was quiet for the whole thing. And here I was thinking she was going to be a demon. They wanted her sleep deprived so they could see her brain activity while asleep are close to sleep. Abigail's type of Epilepsy occurs most often when she is tired or before and after going to sleep. And since the seizures make her tired its a bitch of a vicious cycle.

She even had a seizure for the test so they could have it on record. I have been through enough of these EEGs I can read the test in real time now. Right as she started her seizure I asked the tech to turn the monitor my way so I could watch. Sure enough the familiar pattern was present across all regions of her brain. I watched it taper off and saw some fairly normal EEG readings with mild blips here and there, not sure what regions the activity was in but there were occasional excessive activity. I am not an expert but it looked better than some of her past EEG's. Not great but not bad either.

I have some pictures of her being really cute while they were affixing all the wires but I am getting errors when I try and upload the images. I will try again later.

Sleep Deprived EEG

What wonderful genius thought this procedure up.

Keep the poor kid up 2 hours past their normal bedtime.
Wake the poor kid up 2 hours early.
Then hope they goto sleep while they adhere 30+ wires to their head.

Melinda has been up with Abigail since 4am and I will be with her at the EEG this morning.

The poor kid is trying to learn how to sleep while sitting upright or leaning against walls at this point. Last night she was practically begging to be allowed to go to sleep. There is some sort of perverse justice in denying her sleep and I am trying not to enjoy it to much.

I have a feeling the car ride to the hospital will involve her window open, music, and lots of "Hey You!! Wake Up!"

Anyways....were off to see the wizard.