showing their ugly faces....

This DAY....uuuuuuuhhhhhh
To say that we did not have a great Weekend at the cottage is an understatement...I am so blessed to have such a large wonderful family :)
Great food and great company was had..great weather...great stroll thru my favorite used book store and great madie...alll tuckered out by MOnday evening from all the play. :)
When I say "uhhhh this day" I mean well...today did not have the best beginning to it..Its been a long while since a seizure has showed its ugly face and today that is just what it did....I was panicked as she just kept going and going and going...it was so strong I called her name and held her and kept saying stop...stop...stop..she was a compleate mush when she was done and slept for an hour and half...
I will be honest and say I just broke down...I just cried anc cried and cried...
I put a call into the Neuro and ask just what the heck now??
When I heard back it was suggested to me that we go up to 3mil twice daily for her as far as her Depakote.. which was kinda my plan after she was off her Clonpin...but it takes a big seizure for them to finally agree....
I was instructed to give her 1ml immediately and then her usual 3ml tonight and then beginning 3ml in the AM tomorrow...we shall see....
I see her seizing and its like I am watching her being erased...erasing her sparkle..erasing all the good things she has been doing and breaking me in two...my heart was so ached...I was feeling so helpless...certainly a breakdown moment.
She however woke from her seizure nap making her happy noises but still groggy..fed her and she was just calmly hangin out rolling up a storm on her blanket...
Her mood has been generally sleepy today and its continuing to break my heart...she sleeps now and has PT in 30 minutes...
At least she has been taking her bottles Ok...
Maybe its just a glitch...maybe its just one of those seizures that "just happened" and then when we can get her meds a lil higher she will be back to her usual self.
I DOnt ask God for much...maybe smaller thighs...but I am not by no means asking him for anything but strength to make it thru all this...to give me the "Ooomf" I need to be there for madie and not want to crawl into a cave..
I ask everything for my lil girl...everything...give her the chance to be seizure free and give her the strength to walk and jump on her own two feet...get out of that baby swing and go over to one of those so called normal kids and throw sand at them...so I can yell at her to be nice to the snotty little kid....lol
yuppers...not fair folks..just not fair...Ive had many tell me that Madison was given to me for a reason...that God had a plan for me to take care of this special little girl. At times do I have no CLUE what I am doing?? of course!! But I learn as I go....
Ill keep ya posted...
((( hugs))))