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...

Just wanted to welcome you all to MY LIFE

Thank you so much for stopping by!  If you are new to MY LIFE, just leave me a comment and I'll be sure to follow your blog as well!  Enjoy the "Blog Hop"

More to come...

The stress of being mom and all...

Being a mom is hard work, no matter if you're married, single parenting, raising one or twenty kids.  Raising a child with a disability coupled with single parenting is tremendously hard.  It has to be done!!!  I  never knew how much stress can affect you until this month.  After hearing that my daughter has scoliosis and would need another surgery on her feet, all of that along with...yeah, her hip is still dislocated, I was totally drained.

I took my daughter to be fitted for the jacket and the boots that she will have to sleep in and that day I felt myself feeling week in my back and leg...being 'supermom' I let it slide.  We had a nice outing afterwards, went to see "Hop" and the pains grew and grew, going from my back hurting to feeling okay then my leg would feel like it was just cramping...when I tell you that today April 19, 2011 is the first day I've been feeling okay.  Still not 100% but I can bend without pain and sit and get up without pain.  On last Friday, I had taken my daughter to school, and I was eager to perform my duties as her paraprofessional but the pains were unbearable, and I decided that I had to get that much needed break.  That's what we did!! We came home and relaxed!  Long soaks in the bathtub and leg cramps pills along with Motrin did the trick.

Basically what I'm saying and telling myself is that I need to take care of self as well...take mental breaks ( those are few and far between ), I have to because my princess needs me!!

More to come...

Update

On April 1, took my princess to be fitted for the scoliosis jacket she will have to sleep in along with the night-time splints, her new 'required' night time gear! :-(  I am not sure how she's going to tolerate having to sleep in all these extras, especially with hot weather approaching.  We are going to make the most of it and do the very best that we can, as always!  Making strides with smiles on our faces!

Once the jacket is complete, her ortho specialist wants an x-ray of her in it...hopefully this can be done in a facility near us, so that we won't have to make the two hour one way drive to the hospital he practices out of.  

More to come...soon :)