Bittersweet Decisions

The past few weeks have been a bit overwhelming but at the same time a step in the right direction.  As I wrote in my previous post we were meeting with a doctor to ask questions about the feeding tube and nissen (sorry spelled in wrong in my previous post) surgery.  He agreed with us that the nissen and feeding tube were definitely necessary for Kahsay.
    These two surgeries will help Kahsay gain and maintain weight which will only benefit his development.  I am ready to take this step but at the same time for me it was hard to get past thinking it REALLY meant Kahsay was a special needs child.  Let's be honest he was a special needs child before these surgeries, but I think I was in denial. I had these hopes that his development would "catch up" and he would be completely normal.   I also know it means it will be more difficult to have random people care for Kahsay.  We already have a few select people who watch him, and now it will be even harder.
      On a positive note,  I am excited that I won't be called home by the babysitter because Kahsay puked all over his bed.  After having the nissen surgery he will not be able to throw up.  I am so excited to be able to give him his medications through the feeding tube.  He is HORRIBLE at taking his meds due to his dysphagia.  I am so ready to have peace of mind that he had a sufficient amount of calories at the end of the day.  These benefits far outweigh the labels that scare me.
   We are scheduled for a consultation with the surgeon next week Wednesday.  I am praying all our questions are answered and we do not question are decision to do this.
    In addition to preparing for these procedures, I received a call today with the results of Kahsay's 24 hour EEG he had last week.  It confirmed that he was having numerous seizures a day.  More than I am even aware of.   I am so thankful for a friend who encouraged me to follow my mommy instincts and have him tested.  We did have an EEG for Kahsay in the fall, but it was only 30 minutes.  I had noticed the episodes becoming more frequent, longer, and more intense.
     We are told he is having two different types of seizures.  One of types is caused by only one part of the brain.  These types of seizures are not as noticeable because the physical effects are not as apparent.  While these are not as noticeable they are still bad.  The other type of seizure is caused by the entire brain.  These are the ones I see physical signs of.  Both types can cause cognitive delay, tiredness, lack of awareness, sensory issues, etc.  The nurse explained to me that every time he has a seizure his brain has to reboot.  If he is having numerous per day is poor brain is constantly rebooting.
     He is being put on a medication to try to control them.  It is all trial and error as to what type of medication and what dose will work.  He is going to be scheduled to have a 24 hour video EEG at the children's hospital so they can really see what happens during his seizures.  It will better equip us so we know    when he is having them.
    While I dreaded hearing my son is having seizures, that will most likely get worse as he develops,  I also am so thankful to have caught them.  I am thankful for another answer that will help get Kahsay on the right track to be able to develop to the best of his abilities.  I guess I can say it was a bittersweet week.