One Beautiful Life

Bad Again

Sadly things are bad again.  After Abby had a seizure in the lobby on the way out of the hospital and two bad ones in the car on the way home, she fell over in the floor in front of the kitchen last night and had one.  Luckily she had put an arm on the stool in front of the bar and that kept her face from hitting the hard wood floor.  She has been having tingling before the ones in the day and we have had some sort of warning but that one just took her down.

Then last night, she tossed and turned for hours.  Around 1 a.m. a leg would kick or an arm would jerk once about every ten minutes.  The seizure came at 2:30 a.m. and then the second and third quickly followed.  I had to give her diastat.  This drug is given in the rectum and is supposed to stop seizures immediately.  She was very upset I had given it to her and was asking to go to the bathroom.  By the time I got back with Don (I can't carry her anymore) who was sleeping in the guest room, she was in her fourth seizure.  This is very bad as it indicates her body is getting used to the diastat and we may have to go up on the dosage and in the mean time it didn't work.  Very upsetting to say the least. 

Don called in sick for work today, thankfully as I was up from 1 a.m. to 4:30 a.m.  In addition to praying... my brain won't let go to sleep.  My entire body is hurting from head to toe today from stress.  I need a big bull dozer to just run back and forth over me a few times and then I may feel better.

We've called lots of questions in to our neurologist who is on vacation... of course.  I am wanting to go back up on the topamax... like 50 more mg today.  Her being developmentaly delayed is far better a life for her than this.  Her right hand is already really affected by all the seizures as is her right leg... she is walking with a limp and her arm hangs and stays disengaged.  So I am starting therapy with her today.  She is not in a good mood so that ought to go over real well!  Walking up the stairs a few times to build strength in her leg, squeezing play dough in her bad hand, and some therapy ball may be about all we do... but it's a start.

Please continue to pray.  The number of seizures we are having just can't continue... (over twenty since Monday) as can't the use of diastat every day.  Please pray the next increase in medication will calm this down.  Please pray she doesn't fall into anything in a seizure and injure herself.  Please pray that she doesn't have clusters of seizures today.  And please pray that her body will be able to start healing from this horrible time.  Thank you.