Hanging in!!

Luke had a really good week!  No more seizures!  He seems to be adjusting to his medicine well.  WHEW!  Every day that passes without a seizure helps us to breathe a little easier.  We so appreciate all the sweet words and phone calls this week.  It helps us so much to know that people are thinking about him and pulling for all of us. 

We met with the neurosurgeon this week and I just wanted to give you a little update on that.  First of all, I didn't think there would be a need for an update.  I thought (as my sister in law says) we were just going in for a 'meet and greet.'  Not so much.  There is no huge alarm right now but it was disappointing.  I thought we knew all that was wrong with Luke's  brain.  And we might.  But we might not.  Basically in a nutshell (since I keep writing these short novels!!!) the surgeon is concerned enough about the enlarging ventricles to order another MRI sooner than later.  He thinks there might be another problem in Luke's brain where there may be a blockage not allowing the spinal fluid to pass through therefor causing the enlarging ventricles.  Both problems are correctable...surgically.  BUT no one is saying that we are anywhere near that now - or (HOPEFULLY) ever. I think that I have been telling myself that surgery wasn't really ever a possibility so it was a little bit of an eye opener to me.  Thankfully Dan went into the meeting more realistically so a level of calm was maintained!

The great news is that the day we have the MRI we will also meet with the surgeon and should have our answers.  He said at this point, best case scenario is we go in for the MRI and not much has changed and we come back for another in 6 months.  So that is what we are hoping for.  After having a little time to process, we're glad that he's getting this MRI sooner than later because then we know that he is being monitored closely and if the ventricles are enlarging enough to become a problem then it will be caught quickly.  The problem is that the signs that the enlarging ventricles are a problem are the SAME as the side effects of the medicine and the aftershocks of seizures!!  So it's really a blessing for our peace of mind to get this MRI quickly. 

The MRI is tentatively set for October 28th so again we wait...I should have called this blog 'Waiting'!!!  :)  Honestly, right now our biggest concern is making sure his seizures are under control and at this moment in time they seem to be. So we are very happy! 

This fall has been a little bit more difficult than we anticipated.  We are very lucky to have understanding employers, caring and concerned friends and a loving family to get us through.  We continue to celebrate the fact that Luke is doing far better than we ever expected.  We'll update more after the MRI!  Fingers crossed for another 6 month waiting game!!!!!!

I started this way earlier today.  Since then I found out a good friend's son had a major seizure today.  There are major and minor ones.  To every parent, seizures are major ones.  But I need to remind myself often and be thankful that we have only really had minor ones so far and hope that it continues that way.  To all the families out there who are experiencing any kind of seizure or worrying about the probability of a seizure...our hearts go out to you. Thinking of you J & hoping you are all resting well tonight...