Busy schedule

Since the last post, my little one has been free from noticed seizure activity.  I say noticed because a previous EEG showed that she has "quick fires" while asleep.  Even though she has not had pronounced activity, we have been very busy with making sure her scoliosis jacket is a good fit for her, and that the night time splints meet the specifications of or orthopedic specialist.  Not, the case, the jacket is back with the orthotics office to get some adjustments made and doctor does NOT want her sleeping in the splints just yet, just place them on her for two hours at a time and take them on to make sure there are no pressure spots or anything to cause irritation to her ankles.

My sweet daughter was only able to go to school two days this week, because she has been under the weather with a little cold, she's finally coming around...its been a battle.
Not only has the cold been bothersome to her, the Zonegran has had her in a major fog, since the dosage had to be increased.  Now, per the instructions of her neurologist, she will be weaned off of it over the next three weeks and re-introduced to the Topamax.  Just another complicated schedule this mom has to keep  up with!! OH JOY!!  It will be done, because it has to, and with God as the center of our lives, this and everything else that comes our way will work out just fine.

More to come...

Easter Sunday

We had a very unexpected turn in our Easter weekend plans.  On Saturday we had a nice day out, my princess, her best friend/cousin and I went to the movies to see Rio.  Awesome movie by the way.  Afterwards we did a little shopping to finish up with the holiday weekend meal. Came home still having a decent Saturday, until late that night!!

She had fallen to sleep around 8 that evening and was back awake around 10, I thought it was kind of strange that she would wake back up after the day we had.  So, I was busy cooking and making preparations for Sunday, doing my hair, laundry and other "mommy" things!  I walked into the room to check on her around 11:30 pm and she was looking at me in such a spaced out way, and she had lots of drool coming from her mouth...I had the gut feeling that my princess was having a seizure, I tried to get her attention and she kind of turned her head and was just staring at the ceiling then her eye started to twitch.  I called one of my sisters to let her know that my princess was having a very involved seizure.  Before I knew it she had two aunts in the house with help, for moral support and thank God, one is a nurse.

The first seizure only lasted about 3 minutes, then my baby started seizing again.  Another short one, my nurse sister called the neurologist to let them know that she was involved and having "clustering seizures", I had never read up on that or heard of it until she mentioned it to the doctor.  For the first time since my baby had been diagnosed with epilepsy and being on a seizure medicine, Topamax and was weened off, then just this past March being place on another, Zonegran, had her Diastat had to be administered in our home.  That was done around 12:30 am.  I was so devastated and knew I could NOT let her see the hurt and frustration in my eyes. Its amazing how a child knows MOM so well that they can tell its something going on without her uttering a word. She fell asleep shortly afterwards, but still had some activity, even while the drug was been given.  This mom couldn't fall asleep until 3:30 am, for watching her princess!

Needless to say, she was home from school today, still kind of groggy and drowsy from the Diastat coupled with the Zonegran.  We got a call today from the nurse at her neurologists office to see how she was doing and to let us know that per doctor's orders the one per night capsule ( opened, taken with ice cream, smoothie, whatever works )  has been upped to two.  I told her that its already hard to get her to take one, now we have to war over two.

As always, we will press our way through this too!

More to come...