Tuesday, October 5, 2010

Cautiously Optimistic

On Friday October 8 will be two years exactly that Meghan had her first seizure. Oh how I remember that day. She had her well baby check that day and got her 6th month immunizations (the final dose of the previous two immunizations). I also opted to get her the flu shot. We are not big on the flu shot, but with the girls being in daycare and Elizabeth previously having it without any problems, I went ahead and got Meghan hers. I went back to work that day after the appointment but totally had this urge to just want to be at home with her. The evening came and everything was uneventful! Meghan, being 6 months of age, liked to look at herself in the mirror. So my mom had her up on the bathroom counter and Elizabeth kept turning the light off on them. Every time she would turn it off and on, it would scare Meghan and she would jump. It was pretty funny actually. Well, they left the bathroom and my mom carried her into the kitchen. It was then that my mom noticed that she was continuing to do that "startled type" of jump or twitch. She called me in and I watched her. I have NEVER seen a seizure in my life or really gave seizures a second thought for that matter. But all it took was maybe two twitches, but the look in her eyes and the propped open mouth, I knew it was a seizure.

Poor Matt was on the bed talking on the phone to his sister down in LA. I ran in the room, yelled at Matt to get off the phone, call 911, Meghan was having a seizure. Really, poor guy, I have never seen panic and confusion like that in him. As we were waiting for the ambulance to come, Meghan let out this laugh that completely sounded like it was inhuman...seriously!!! I still get chills remembering that laugh. The paramedics came, confirmed that she was having a seizure, and we loaded up and headed to the hospital. In the ambulance, they actually had to give her an adult dose of Ativan because the seizure wouldn't stop. After a few days in the hospital, a normal EEG and MRI, we went home hoping that it was just single event.

Here we are two years later still looking for a known amongst all the medical craziness. It has always been 1 step forward and 2 steps back. But today, for the first time in 2 years, I feel like we have taken 2 steps forward, and not a single stumble backwards. I'm cautiously optimistic because I have learned that you can't jump full on into a celebration because the celebration may only be short lived. However, you bet I am doing my little happy dance in my cautiously optimistic phase!!!

So why you ask...the Felbatol is working!!!!! We have reduced her seizures on average from about 30 a day to maybe 2. We don't know what her EEG looks like, or what an MRI will show, BUT, the seizures are decreasing! That's a start and it was enough to even make Dr Chez excited (seriously that takes a lot). We are adding a little bit more Felbatol to her medicine regime to see if we can clean up the straggling seizures and we will go in for an EEG in a few weeks. I pray that this continues to work because her seizures have been so hard to control with the medication. Time will tell though.

Meghan's last Steroid shot is tomorrow...woohoo!!! She is actually starting to look normal again. Thank you all for your thoughts and prayers.

In a matter of 4 weeks on the steroids, Meghan went from this...

To this!!!

No comments:

Post a Comment