OH man what NOW!

Well since we last updated Hanna was placed on new medication to try to control her seizure activity. She is now being slowly placed on Lamictal on top of the keppra, and zonegran, while being winged off the dilantin. We have been stuck at home for a little over a week, except for appointments for her therapy. She seems very tired here lately and not doing well in public places or with other people. The Dr. said it will pass with more time. I really hope so, she seems so tired and doesn't really want to do anything but lay around ON ME!!! Hope all of you are having a wonderful day.

Latest update

Hanna has now been placed on Dilantin it was a little rough at first because it made her so very cranky and tired all day. But so far she has only had a few days of episode in the past two weeks and her body was able to come out of the pattern. Usually she has one or two for the first day or so then all of the sudden bam bam bam they come like wildfire and don't stop until her medication (keppra and zonisamide) are increased. I did have to give her clonozapam but no diastat. This is a great improvement and no medication increase had to be made!!! Still going through the few days with nothing then a few with episodes...so it is still a little touchy. She will be having a dental procedure on the 13th so all prayers are welcome please.....she will be knocked out for this.

Seizure Diagnosis

Well it has been a very long and hectic road since my last post. Hanna now has a diagnosis.....which some would think oh wow...well it is just as complicated as the whole seizure thing is. She is diagnosed with uncontrollable partial with secondary generalized seizures....YES that is exactly how it was told to me...I finally had to say look i am stupid so please explain this. Apparently the options open to some epilepsy patients are not open for her...she has seizures on the left and right of the frontal lobe...which is where they start. So the epilepsy surgery won't work for her obviously. So now if she contiunes to be "uncontrollable" she will have vargus nerve surgery which is a small electrial pulse sent up the vargus nerve into the brain to help stop her seizures. I guess at least there is a little of an anser now...but honestly i just wish we could say poof and it would be fixed. For anyone out there who has a child that is sick my heart goes out to you.

Learning to trust myself more

Well Hanna did have a good day on Tuesday, but of course Wednesday came and around 11:30 she had her first episode. By the end of the day she ended up with 2 more so I am beginning to see that she is showing me little suttle things that she does when an episode is coming. But then again knowing her it will change. We went and had labs done today to check her levels and so far no episodes but i feel like i am walking on pins and needles. Haha guess it's a good thing I can type by touch because i wouldn't be able to post for watching her so much....hope all is having a good day and thank you all for your prayers.

Kinda weird day

Hanna started her day to day kinda weird normally when she wakes up at the butt crack of dawn, she is ready to go and full of energy. Today though she seemed really tired and didn't eat much breakfast then took a very long nap about 3 hrs. but ever since she is back to ole monkey again. I am hoping this was just a coincidence and nothing more. The last time she was a little quite during the day and not interested in anything else she ended up having an episode. Prayers needed for her today please

Our First Fundraiser

The Goal:

200.00 this is what will be needed to spade ladybug.

This is our first auction so please if you can help in anyway.

First fundraiser is an Auction:

Handmade Mickey or Minnie Mouse: completely crocheted with love. Please allow 3 weeks for delivery as there is alot of detail involved in this. Auction winner will have their choice of mickey or minnie. Leave your bid in the comments here and a link to your blog. Auction will end 1/30/09.

Please begin the bidding at 10.00 I will ship this via priority mail so please include the 8.95 fee for shipping with your bid amount.

THANK YOU ALL FOR YOUR HELP

Introductions

Hello all. I am a 32 year old mother of 4 with my youngest living with an epilepsy disorder. I am creating this blog as a place for all people to come and leave comments for hanna....to see how her days are going and yes to help with our fundraiser. We are trying to raise the funds in order to have our dog lady bug trained to warn us of seizures hoping we are able to sleep again. Everyone is welcome here and I will update every evening as in Hanna's world you never know what is next. God bless you all.