Monday, November 11, 2013

Extended Video EEG Monitoring

If you have epilepsy you know what an EEG is.  If you do not, it is a test that reads your brain waves/electrical activity in your brain.  There are metal disc-like nodes that are attached to wires.  These nodes are glued on to your scalp.  A typical EEG lasts a few minutes to an hour after the leads are placed.  An extended video EEG will last at least 24 hours and go as long as they need it to go.  Ours will last about a week.

All Wrapped Up!
Now that we do not have the Vagus Nerve Stimulator and since Avagrace's seizure activity has increased so drastically over the past several months, we needed a new "base line" test to evaluate where her "storms" are starting, traveling to, and ending.  We are on very limited medication right now and will be off of it all together very soon.  This is so that we are able to get an accurate assessment of what Avagrace's seizures are doing and are like.  We will also eventually do some "stress" type things to see what triggers her seizures.

These stays are never fun.  You are literally asking for what you are trying so earnestly to stop.  The release form when you come into the Epilepsy Monitoring Unit warns you that death is a possible side effect of this test.  You also are in a room with Oxygen, Suction, CPR tools, and all sorts of other life saving tubes and devices just sitting at the ready.

Meanwhile, I am making it fun, singing songs, coloring, playing silly games (candy land is her favorite) and making craft, after craft, after craft.  She hopes to have some visitors at some point and I hope for her sake that she does.  She is such a selfless little girl, she never asks for anything.  But together we will get through it.

I am very blessed to have my friend Brittany, who is also a special needs mama, take my youngest on as her own this week.  He is spending the night at her house and she is taking him to and from pre-k.  The our dear friend Pepsi has the other three kids in the morning before they walk to school for Breakfast and Brendan will be home in time to meet them after school.  It is a busy week, but I am so glad that I am here, close to my other babies, and around nurses that I love.  I only wish I could convince some of my Texas Doctors to come to this hospital and for them to bring some of their practices too!

We do not know what tomorrow may bring but for now, we are slowly drifting off into lala land!

Sweet Dreams!  And if you have a purple shirt and can post a pic of yourself wearing purple (even if it is purple pants or socks) please post it on her page !!!!  I would love to show her some love that way!

Thanks for following us on this journey!  A video will follow soon!!!

1 comment:

  1. God Bless and may the answers come soon

    Norma Sapp


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