Jordyn and Seizures

Today I took Jordyn to her follow up to find out the results of the study done that was used to measure her brain activity and check for any type of seizure activity while she sleeps (EEG).  You all know we had a big party to "keep Jordy up" all night the night before.  She did great and she actually fell asleep for the test.  Honestly, we walked away thinking that nothing would come of that test.  We really didn't expect anything abnormal, especially because the actual sleep part of her test was only about 15 minutes...I thought, what could they possibly diagnose with her in 15 minutes of sleep???

Well today we saw the same Dr who requested the EEG for her. She was very surprised to find what she did too.  She told me she was expecting nothing. She really thought that either her possible seizure was just some weird night time randomness, or just a one time thing, because, what were the odds that I SAW her doing it in the middle of the night????

Her test showed quite a bit of what the Dr referred to as "pre seizure activity" near the back side of her head.  Meaning, that it could possibly have lead to another seizure had she stayed asleep.

You all know what Jordy's birth story is and what she went through.  Her neurologist strongly agrees that her current situtation is most likely from her traumatic birth she had, and the birth injuries she experienced.  She did explain to me though that baby seizures (which Jordy had) are VERY different from regular seizures.  Baby seizures can come in any shape or form.  Jordy had what was explained as a "tick seizure"....basically her arm/hand would just repeat the same motion over and over again.  They discovered she had some blood on her brain, of which was causing the seizures. 

Now because of that, her seizures have probably become more of the "regular type" like I saw a few months ago: Full body convulsions, and her eyes rolled back into her head...lasted less than a minute, and she went right back to sleep.

It terrifies me to know that she may have possibly been having seizures all along, even after she was taken off her anti seizure meds and cleared by her neurologists in Texas as a baby.  Because, most likely, she is only having them in the middle of the night, while sleeping. 

I would love to say how mad we are at WHMC in San Antonio...for causing her to have such a traumatic birth, and definitely some aftermath because of what she went through.  We would love to blame them for what happened, because, it really was their fault...but it's hard to be upset about an incident that gave us our beautiful princess.  Everything that happned was all part of God's plan for Jordy and our family. She may have been a completely different little girl had she not gone through what she did....So, it's hard to admit, but in some ways, we are grateful for what we went through. I would never wish our experience on any other child or family, but... It gave us the most perfect Jordy, and so many life lessons that had to be taught to prepare us for raising her.

From here a few things are going to happen.  First of all, they decided to immediately put her back on anti-seizure medication.  It is the same one she was on as a baby, but hasn't taken in over 3 years.  Next we are to get an updated MRI done of her brain.  I have actually been pushing to get one done for a while now, but I couldn't convince any of the doctors here that she needed one.  She hasn't had one done in years, and I really just wanted to see what sort of changes have occured with the blood on her brain.  I guess now they finally have to.  With a child as young as Jordyn, they have to put them to sleep so they will stay still for the MRI which can take upto an hour.  We also need to get some bloodwork done in about a month to see how the medication is working in her body...they want to check the levels and see if it will need to be increased or decreased.  Finally in about a month we will follow up with her neurologist and see where to go from there.