Thursday, February 27, 2014


This kid is unbelievably tough and brave!!!  He has been such a champ with all this stuff on his head and being confined to one room.  
So far, so good.  The EEG so far looks really good.  He hasn't had any big events that we were worried about so we're still not sure what that was. However he's been chatty,  happy,  silly. ... Back to his normal self.  The doctors stressed repeatedly that this is just a glimpse of time and just because it looks good right now it doesn't mean that it will look like that in a few days.  I get that.  I do.  But what the EEG  and Luke's behavior mean to me right now - at this moment in time - is that he seems really, really good for the first time in a long time.  I'll take it! I know this is something he'll always struggle with but right now our happy,  sassy boy has made a strong reappearance and that is great! 
We're staying one more night to be on the safe side which is fine since we're already here.  We'll both be happy to get home tomorrow. We'll be praying that this new medicine continues to do the trick for a long time! 
Lots of love from us!

Wednesday, February 26, 2014


Ha!  Well Luke and I are waiting for a call from Children's to finally go in for an extended EEG. We'll be there hopefully only overnight.  He started his new medicine last week and things were still really sketchy. We got the call that we were getting in for the EEG Friday.  Saturday. ... He slowly started to improve. The last two days he's really seemed back to normal.  I'll feel better when the EEG comes back clean.  So we're hoping for an uneventful night and to be able to put the last two months behind us for quite awhile!
The picture is from our last hospital stay....This will be the look on his face in a little while!  Say a little prayer for a boring day with lots of treats and apple juice for Lukie!

Monday, February 17, 2014

Waiting for...

Nothing.  We're waiting for nothing to happen.  We're still struggling with seizure control after many medicine increases.  The longest Luke's gone without a seizure since right after Christmas is 9 days.  So we're waiting for a long, long, long period of absolutely nothing. 

His seizures have been small but keep cropping up.  Dan and I are constantly worried that they're going to erupt into one of his 'big' ones.  It's hard because there are no definite signs that a 'big' one is coming.  When we had the last major one, I thought he was on the road to recovery - finally and he SO wasn't! 

Luke also has a multitude of questionable seizure signs.  He has random bouts of stuttering, clumsiness, diarrhea and fussiness that seem to point to seizure activity.  It also leads us to believe that he is having seizures that we can't see because some of the signs will start to appear before we have noticed a seizure.  Yesterday he started randomly choking and gagging on his food which he hasn't done in since he was tiny which was also concerning. 

Some of his seizure signs could also be attributed to illness or to normal three year old behaviors.  However when what seems like the stomach flu (diarrhea) doesn't pass on to the 5 year old or anyone else in the family...that's weird.  Or when he wakes up and sits up crying and holds on to us tight for a second and then drops back down to sleep repeatedly.  Strange.  Or when he starts randomly crying and then can't walk a straight line for a few minutes.  Not normal.  Or when he wakes up fussy and then stops talking for several hours when he's normally a chatterbox.  Weird.  Or when we give one of the stronger seizure meds and his stuttering completely goes away for a couple of days. All of these things help us to know what is unfortunately going on.

His seizures are still mostly happening in the middle of the night which is also stressful.  We feel like Luke knows when they're going to happen a lot now and he gets really upset.  It's heartbreaking when he starts crying and tells us he doesn't want his 'frow up bowl'.  (He hasn't had a throw up seizure since the hospital but he still remembers his 'frow' up bowl that he hated.)  It's good that he knows when they are about to happen so that we can be with him but we're both really worried about his seizures continuing to change and him NOT alerting us to the fact he's having a seizure.  We've been looking into night time devices that would alert us if he was having low oxygen issues but there's not that much out there for that.  A traditional epilepsy mat wouldn't work for Luke because he has no movement associated with his seizures.  We are looking at one device that would monitor oxygen levels overnight because that was a concern with both of his big seizures but not sure what hoops we have to jump through to figure it out. 

I was able to talk to his neurologist today.  We're going to go ahead and switch his seizure medicine to one called Zonegran.  Dan and I both feel like we've increased the heck out of the Lamictal and it's not holding off his seizures.  Hopefully this one will kick in quickly.  We're also going ahead with a 48 hour EEG in the near future.  Our neurologist has been hesitant in the past because we knew he was having seizures so there was no point in doing the EEG.  We're concerned that there may be more seizures going on than we're aware of so we are going to go ahead and get that checked.  Although hopefully by the time we get it scheduled we'll be on the new medicine and this will be past us.  It will be nice to have the peace of mind, though, that he's really not having anything funky. 

Anyway with all of this &*$# going on, Luke is still doing great otherwise.  He's doing well cognitively and he seems to be making gains socially.  He has been tired and cranky a lot but that is understandable.  We continue to have a ton of amazing support and we are truly thankful.  Sorry this is a mostly cranky post but I just needed to vent a little.  We are always, always thankful for how well he's doing but please hope for a little 'nothing' for us!