the LORD is good to me

My heart is so heavy today.  Heavy not for myself, but for Bayleigh.  While nothing about today's visit with the neurologist shocked me, it still was not what I thought we would hear.  I have been doing some reading about her disorder and have been very careful about the sources I have chosen to rely on for information.  But still, I was alarmed at what I was reading regarding her particular disorder.  On Friday over the phone, the neurologist confirmed what I had read.  Today, he added a couple more wrinkles to the issue.  I will try to make sense of this, although I can't say that I have completely grasped everything yet, so bear with me.

When Bayleigh was initially diagnosed, her EEG was typical for petit mal (or absence) epilepsy.  So...we'd get her seizures under control with medication and then she'd grow out of it by adolescence or earlier.  The diagnosis hasn't changed much, but her age has put her in the atypical side of the seizure disorder (I mentioned this a few posts ago).  Since then, a few other things have further solidified that classification.  This now means that she will not likely grow out of it.  It also means other seizure types could present as she grows older...making it increasingly difficult to keep them all under control.  {She is currently being treated for two different seizure types.}  With AAE (atypical absence epilepsy), cognitive delays should be expected...we are already witnessing this in her.  We will not know how mild or how severe the delays are until she is at least two years old, but we will begin testing immediately.  Depending on the severity, she could be at age level by the time she is old enough to start kindergarten.

Here is where we are for now...
Blood was drawn today to test Bayleigh for a genetic condition known to be linked to her type of epilepsy (it is also linked to Carleigh's seizure type).  The results take as many as four weeks to get back.  Over the weekend, we started Bayleigh on a second medication that will have to build up in her system and incrementally stepped up before it will begin to work...we should know in a few weeks if it is doing its job.  We will have another EEG in 8 weeks.  At some point, things should settle down enough that we only have to see the neurologist every four months.

Why the heavy heart?  Our spirits are being attacked.  I personally can handle all of the dents and dings this is going to cause in Bayleigh's life.  I can handle that my baby may be behind her peers.  I can handle more serious seizures.  I can handle being her chauffeur if she is never able to drive.  I {me} can handle it.  But will she be able to handle it?

This is how I feel right now...

How long, lord? Will you forget me forever? How long will you hide your face from me?  How long must I wrestle with my thoughts and day after day have sorrow in my heart? How long will my enemy triumph over me?

~Psalm 13:1-2~

I know that He has not forgotten me.  I know that He is with me right now as I type this.  I know.  It doesn't take away the hurt I feel for my baby.  And it doesn't make me any less angry.  Chris asked me today after our visit with the neurologist what I thought God was trying to tell us.  I did not have a definitive answer, but I do know that Satan would very well like for us to believe that we are to blame and that we are being punished.

So, this is what I am going to say when I hear him whispering this lie to me again and again...

I will sing the Lord's praise, for He has been good to me.

~Psalms 13:6~