Yesterday I got all checked into the Epilepsy Monitoring Unit at St. Mary's Hospital for an extended stay to monitor my seizures. Seizures are measured via electrodes placed on the scalp. These electrodes measure my brain waves and look for patterns (spikes and waves). They will also indicate where in the brain seizure activity is coming from. Now, in my case, I was initially diagnosed with Epilepsy when I was 6 years old so they already have a lot of info on my seizures because we have done these tests before. However, things have changed A LOT since having babies and that is why I am here. Since the babies were born I started having grand mal seizures. Due to all of the changes and all of the 'activity' it was time to update these tests and get some solid answers and direction for action going forward. In addition to updating and answers I am curious to know if I could be a candidate for brain surgery. Now, before you flip out... :) Please know that I just want to know at this point. This surgery is a VERY successful surgery for those who are candidates. If done, this would allow me to be seizure free and I would not have to live life with medication either. :)..... Hmmm.... I Can't even imagine at this point what that would be like.
So for now I'm here. Just waiting for some type of seizure activity to happen so that it can be recorded. As crazy as it sounds I am asking you to pray for seizures. :) As of right now my Dr. has stopped my medication completely. Tonight they will try to sleep deprive me and if that doesn't work they may even give me a glass of wine! ;) What a party over here! Haha! We will see what happens. Another concern at this point is that I have low white blood cell and low platelet counts and that seems to be a bit of a mystery. Its not so low that it's a major concern at this point but they will draw blood work again tomorrow. IF we can't draw any conclusions during this stay they may just ask for blood work every 6 weeks and if that shows continued low levels then I may have to see a Hemotologist. Hmmm...Well add that to my wrap sheet! ;)
The babies and Jared are doing absolutely great! Happy and content hanging out at Aunt Abby's house with Cousin Fitz and Lola (Siberian Husky). :) I think they will be up later to see me and I can't wait to see them! They were able to come up for a bit yesterday and I was so happy that they weren't freaked out by all my wires and 'head gear'. :) Please pray that they will continue to do well for Abby, Jared, Grandma Sandy and then My mom later in the week when they go there. Thank you!
I will keep you posted on what happens.
God bless, Sleep well,
-CW
your babes are so much fun:) so happy to have them-fitz is getting lots of practice being a big brother;) here's to hoping or successful seizures tonight! hopefully we'll see you soon at some point this evening!
ReplyDeleteSo sorry your dealing with this but hoping something will develop and you will get answers. Praying for you and the family
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