Being Me…

5/12/08

• 4:05 am - typical night-time episode complete with loud scream. Passed quickly though - within 5 minutes she was calm and back in bed.
• 8:20+ - a few head jerks
• Afternoon - head jerks, no screaming, passed very quickly

5/13/08

• 6:24 am - screamed, a head-jerk, then it was over and she calmed down and went to sleep.
• 7:35 am - a head-jerk or two, then it was over.  She leaned against me for a few minutes then wanted down to play.

You know, I’m really, really, REALLY tired of ERs.  No offense to the folks who work there - the people I talked to last night/this morning were great.  I’m just tired of being there in the wee hours.  I made a run to the ER last night with our sweet daughter at 9:30 last night and was there until 3:30 this morning.  Sigh.  She has had multiple “seizure-like” episodes this week, once a day until yesterday when she had THREE.

Our daughter (10 months as of two days ago) seems to be doing ok this morning.  My husband says that she hasn’t had any episodes this morning, which is good.  She’s calm and resting a bit on the floor right now.

Our son (2-1/2) is, thankfully, oblivious of all of this.  He slept through all the excitement and life is going on as normal for him.  Yay for normalcy!

I feel like I’ve been run over.  I was in bed around 4, then back up around 5 to feed little miss, then back in bed.  Ah well… this too shall pass.  She has an appointment tomorrow at 11 am with a pediatric neurologist and we’ re ALL hoping to know something more after that.

So.  I’ll start with Dennis the Menace.  Apparently he moved in with us when I wasn’t looking.  You see, our eldest has now pulled the curtains down - no, not just down but actually OUT OF THE WALL - twice in a week.  He has also discovered he could get in the downstairs bathroom (we’ve fixed that).  Add to that the discovery that nap time and night time are GREAT times for pulling everything out of the dresser and piling it in the bed…and it has been exciting knowing him this week.  (We’re now using a piece of plastic pipe to block him out of the dresser, at least mostly.  He can get a few things out but not everything!)

As for our little miss, she’s having quite a week as well. This one is tough.  She had her first trip to the urgent care place yesterday.  She has had several instances of … odd behavior.  Almost like “mini seizures”.  She tenses up, leans forward a bit (or jerks forward), her arms shake…then it passes and she screams.  She’s responsive afterward, and the first time she calmed down quickly.  Yesterday, she stayed pissed off for quite a while, but didn’t have a second episode that we saw.  The people at the urgent care place told us to take her straight to the ER if the episodes get longer.  They also arranged for her to have an appointment with a pediatric neurologist on Monday; he’ll ( or she’ll) do tests to see if there is any actual seizure activity going on.

What I’m doing now is feeling like the worst mother EVER.  I feel like it is something I did that caused this problem for HRH, although my other half has indeed pointed out that sometimes things just happen.  I am not going to be the cause of everything bad that happens to her and I can’t heap that guilt on myself.  Still.  Suddenly I really realize what it is to want to save your child from everything and just how helpless a parent can feel.  Whatever caused this in Sophie…I can’t stop it, I can’t alter it, I can’t do anything about it.  I’m repeating that to myself, trying to stop stressing myself out completely.