freakishly calm

Time crept for us this week.

Most of you already know that I am not one of those parents who freaks out about every rash, runny nose, or scrape my children get.  Even with my firstborn, I was pretty laid back.  Don't get me wrong...I did a healthy amount of freaking out about stuff.  He, after all, was very sick for the first couple of months of his life.  And I was a first time mom.  Freaking out and new moms...they just go together.  My laid back nature has brought me through a new experience.

A few weeks ago, I began to notice that Bayleigh would occasionally zone out....just stare blankly at what seemed to be nothing for about 10-15 seconds.  Then she'd shake it off and return to whatever she was doing before she zoned out.  At the time, I definitely thought it was odd, but dismissed it.  For all I knew, she could have learned to take a quick nap with her eyes open.  Cool trick, right?  Later last week, I began to notice the zoning out several times in a day, but they were also coupled with her eyes rolling up and her eyelids fluttering.  The whole incident would only last about five seconds, but I knew something wasn't right.  I began to document as much as I could what was going on with her.  By Monday morning, I had grown concerned enough to talk to our pediatrician about it.  I simply explained what I was seeing and how often.  I was totally unprepared for his response.  He thought she could be having seizures.  Seizures?  All I knew about seizures were the type Carleigh had when she was a toddler...they were scary.  These were not that kind.  He said we could wait another couple of days to see what happened.  But by the next evening, they had begun to happen more frequently, and I was growing concerned.  I e-mailed him again.  This time, he requested to see her first thing the next morning.  I was worried, but still not freaked out.

Off we went Wednesday morning to see our awesome pediatrician.  While we were there, he witnessed one of her little episodes.  He wanted her to be seen by a neurologist.  After the two of them talked, it was decided Bayleigh should be admitted to the hospital for testing.  I could tell our doctor was trying not to alarm me, as I had never witnessed him so concerned.  My concern was growing, but still I wasn't freaked.  Chris freaked.  He was in Tulsa at the time and could not get home right away.

So the girls and I got things in order and headed to the hospital.  By the afternoon, we got our angel to sleep and started our first EEG.  We found out that afternoon that the EEG was inconclusive.  She had not seized during the 15 minute test.  Since I knew something was wrong, I was quite discouraged.  I thought we were going to go home with no answers.  But the neurologist suggested we do a sleep deprivation EEG the next morning.  The lack of sleep would increase the frequency of the seizures and allow them to capture record of them.  I was calm when we went to bed.

We kept our girl up late and woke her early the next morning and kept her up for a few hours before putting her down for a nap.  She had already had 20 of these little seizures before the test began.  A little freaked on the inside, but calm on the outside.

We were left alone during the test and given instructions on what we were to do.  We woke Bay after 45 minutes of sleeping.  Not fun.  We had to keep her from pulling on the EEG wires for as long as possible.  That ended up being a couple of hours, praise God!  We could actually see that what we were witnessing was being recorded.  While I would love nothing more than for her to not have these seizures, I was grateful she was having them while they were recording her.  Here is our girl playing with her daddy...

 This is some of my charting...it was crazy.  I didn't chart during her naps or EEGs...and then I actually just got tired of doing it altogether.  We all knew she was having them by that point.

The last EEG captured both sleeping and waking seizures, and the doctor was able to give us diagnosis...epilepsy with petit mal seizures.  This is probably the least serious type of epilepsy she could have (at least in my opinion).  But what does this mean for us and for her?  Well, first it means that we have to medicate her for at least a few years.  We have to watch her closely (and those who care for her will have to watch her closely) because when she has her seizures, she loses consciousness.  Even though it is only for a few seconds, she could injure herself if she is walking, running, riding a bike, etc.  In addition, her case could be different than others who have been diagnosed with this.  Turns out, our little love is an unusual case.  Babies don't typically develop this type of seizure disorder, so there may be some unknowns.  Further testing could shed some light on why she had developed this so early or at all.  For now, we are clinging to the common diagnosis, and that is that she should grow out of it by the time she reaches adolesence.

Through this whole process, Bay was so precious.  We were sprung from the hospital last night.  Then I freaked.  I cried the whole way home.  I could chalk it up to lack of sleep or even tears of joy and relief that it isn't more serious (though serious enough), but I know that I simply freaked.  I just couldn't hold it in anymore.

Bay fell into her bed without a peep and woke just now (at 9:30am).  I didn't sleep as soundly, but was thrilled to be back in my bed!

What's next?  We will visit with the neurologist in a couple of weeks.  Then we get to see him every 4-6 months for as long as she has seizures.  She will continue to have an occasional seizure even on the medication, though the frequency should be significantly less.  Once she gets settled into her medication regimen, we will have an MRI done to check her brain anatomy.  There is possible genetic testing in our future as well.  (That's another long story.)

Thank you to everyone who has been praying for our family.  We have felt them, and are so grateful for the support network we have in each of you!  God is so good.