Wednesday, June 12, 2013

566 days and counting.

Any idea what the title refers to?  I'll give you a clue.  It involves this adorable boy sitting on top of a bear statue.

Gosh, he was so proud.
It has officially been 566 days since my Natey Naters had his last seizure.  It was November 24, 2011.  That was his second one.  His first was October 8th, 2011.  

I can never forget those dates.  The first because it was the day before mine and Eric's anniversary.  The second because it was Thanksgiving and I LITERALLY was pulling the turkey out of the oven when we heard weird clicking. (his tongue)

It has been a long and challenging road, emotionally.  We have had blood work (I don't do needles), 2 sleep deprived EEG's (had to keep him awake until midnight and then wake him up again at 4am) and one 24 hour EEG at the hospital.  (He played the Playstation literally ALL DAY LONG)  

Unfortunately Nate failed the last sleep deprived EEG in March so we don't get to get off the meds at LEAST for another six months.

Why am I bringing this up you ask?  Because today we had our quarterly appointment and she said he was looking fantastic!   He actually gained some weight, the meds he is on can be an appetite suppressant, AND he grew!  The height doesn't surprise me.  He is a giant. 

We get to do some more blood work...fun fun.  His doctor said we will keep him the way he is for another 6 months and then do another EEG and go from there.  She wants him 2 years seizure free before we start trying to wean him off.

The uncomfortable part for me is the taking him off meds.  I can't handle it when he is sick.  I kind of use his Keppra as my safety net, if you get what I mean.  I feel that if he is on it, nothing can go wrong.  Dr. Dayal said today that once he goes off his medication he has a 50% chance of having another seizure.  FIFTY PERCENT CHANCE.  That isn't the greatest of odds.  Like, I feel safe having him in school on the Keppra because I know that there is only a SLIM chance of an event happening.  But 50% chance?  Scary.

Luckily the odds decrease as he gets older so that is good.  The first 6 months is the toughest.  And of course that falls right around flu season this coming year.  

When Aidan was first born I went to a "Mom Support Group" at the local hospital.  When I was there one of the nurses that ran the group said "Having a baby ages you 5 years."  It is true.  I think having a kid with issues tacks on another 10 years though.  

YAY GAINING 25 years from kids!!  lol.  I wouldn't change a thing though.

No comments:

Post a Comment