A Panda Named Spud

 I was given a stuffed panda which I named Spud when I was in the hospital.

I nearly squeezed his guts out after surgery because of pain.....yesterday I realized his arm was hanging by a thread.

Poor Spud ...he smells of some strange chemical like surgery smell... ether ???

He helped me out a great deal and nearly lost his arm in the process.

Daddy said whoa he looks rough! 

Poor Spud....but he is mended now.

Yesterday I had a doctors appointment , I will resume IVIG Monday.... The doctor remains cautiously optimistic.

There was also the discussion of brain surgery and VNS.

I said VNS would be o.k. but NO to removing part of my brain .

But....he upped the onfi and we will see how  I do until next month.

So that is that.

We will see how things go.

EMG Results And A Diagnosis

  So today I had an EMG done.....was not painful at all they did not use needles some sort of conductor thing and metal probe things. ( Well not painful for me.)

 So my left side is pretty bad , the nerve conductors are like blocked or something.

I sort of figured that.

Anyway I now am diagnosed with CIDP  Chronic Inflammatory Demyelinating Polyneuropathy.

It is an autoimmune disorder, my body has decided to attack itself ...to attack the myelin sheathes around my nerve fibers.

The destruction or demyelination of the nerve leads to an impaired ability of the nerves to communicate and function.

That is all I am going to say about that right now.  It is bad.

Also the EEG I recently had showed a seizure from the left temporal lobe.

The Dystonia is due to the CIPD.

Now I am hopefully going to be getting IVIG...to stop the progression.

We don't know how much or if it is actually going to make me better but if it keeps me the same that is better than worse...I have nothing to loose.


Thanks for your thoughts and prayers.

A Book I Wrote

 There is a girl who wears a helmet, Maybe you have seen her?

 Maybe you stared at her because you were curious?  You probably want to know why she has that helmet on................

 ........I will tell you some things about her. She has a seizure disorder. Sometimes she will fall down and get hurt.

 Sometimes she might stare and not be able to talk.

 Sometimes she might just be doing something odd, like smacking her lips or picking at her clothes.

 Maybe you saw her have a seizure? Maybe it frightened you? It is o.k. to be a bit frightened, but please don't run away from her...........

 .......She still needs friends!! She likes it when you talk to her, she likes it when you smile. If she does not smile back .....she is probably having a bad day and is really really REALLY tired.

 How do I know these things? I am a girl that wears a helmet!
 If you see a girl or a boy having a seizure, do not  hold them down or try to force them to stop. Do not put things in their mouth. If they fall someplace dangerous or are standing someplace dangerous ( like a road) tell a grown up (if you are a kid).

You should tell a grown up anyway , even if it didn't happen in a dangerous place.

Be A Friend! 
                     Sincerely, Jessica

Friends Can Be Found

 Yesterday Daddy took me to a jazz concert and then afterwards we went to eat at Dante's. The concert was wonderful but so was what happened after dinner.

My Dad was taking to two young  guys and I had a seizure ( They happen a lot in the evening) The two guys got silent and starred at me ( so I am told) . Daddy said I wasn't really o.k. but that it was my normal, the guys then told Daddy that their Mom has epilepsy and the rough times she went through.

The guys understood......my life.

Later Daddy went to get me some juice and I stayed and talked to the guys.
 The one guy said that he wished there was some sort of technology to fix all my problems and then he said if only we could rid you of those God d@$%^# f#$%^&* seizures!

Well you know what? I rather liked those cuss words. ( I smiled)

Those guys told me I wasn't alone in what I was going through and that they did not believe in social barriers.

One day , they said, I shall kick epilepsy's d@%^#8 @$$.

They got silent when Daddy came back, probably because they were saying bad words, but somehow that didn't bother me at all.
I like those guys.