Bag of Emotions...

Today was the big appointment in the city out of town. We were visiting with the pediatric neurologist. He really is great, I don't think we could have asked for anyone better. I went in, list in hand, of questions I had.

He started the appointment with a great thought...he said that he has learned so much from Faith. It was a lesson that he really needed to learn at the time and now he uses her as an example for families who feel that they have lost hope. I think that is awesome!! Our little bundle of HUGE faith is changing the world somehow!!

I should know better by now. When dr's start with overly positive notions, that there is always going to be some sort of let down later...

We first talked about medication options and have chosen to keep her on phenobarb but try the pill format instead. We want to see if it is the alcohol base that is causing the sleep disturbances and behavioural issues. If that doesn't change anything, then we will move on to the Trileptal, which sounds good, but there are some drawbacks...which poison do we choose? We basically decided that if it's not broke, we are not going to fix it...

Then we went on and I started asking my questions. I really should have prepared myself a little more...First question. Where exactly is the damage? There is more damage then we were led to believe a little while ago. The areas affected are the bilateral frontal, the posterial temporal, and the occipital. Basically everything they told us in the beginning...

Next question, what do these areas control? In order...behaviour (right and wrong, inhibitions etc), motor skills and social; memory and colour vision; and vision.

Third question...the behaviours we are seeing now, are they signs of the damage or is she just 2? Basically, yes, she is 2, but these are early signs that we will need to watch. We will need to be more diligent in teaching her things. We will need to be creative...memory issues...Eventually we may need to go to behaviour therapy somewhere...but not for a few more years.

Then he asked a bunch of questions regarding her development and at the end of it all he says "if I had to diagnose her right now, I would have to say Faith has mild cerebral palsy"...then it happened again!! My world stood still. I told him that I had to digest what he had said and he told me to take my time.

This is not something that I was prepared to hear...we were looking at ASD or ADHD...but not CP...

So, I got through that and he went on to do a physical exam of her. He was perplexed while checking her muscle tone.

After looking at her, checking it again, he said that he could not make the CP diagnosis. Her muscle tone was fine.

By the end, he agreed that she has an Acquired Brain Injury and has autistic tendencies, but not autism, on paper she has CP in person she does not...but she can't be diagnosed with anything but the ABI...it will not be autism spectrum, because know the cause. It won't be CP because her muscle tone is fine.

So, where does that leave us? Wow...kind of nowhere...ABI's are generally in adults or older people from motor vehicle accidents. I have no clue if there is any behaviour therapy that we can get into for this "diagnosis".

I feel like we don't belong with IDP, because she looks "typical", I feel like we don't belong with "typical" because there are some development and ABI delays, I feel like we don't belong with the epilepsy groups because we haven't truly experienced sever seizures, and I feel like we wouldn't fit in with the ABI groups (if there were any) because Faith hasn't got the general outward signs and symptoms...so I feel like it leaves us all alone. (I know we are not:-)

I have a lot of other things that I need to work through because of this. This is just the basics from the appointment today. I don't want anyone worrying...I am not losing my mind, but I do want others to know that grief can be experienced in many ways.

I talked with one of our workers today and she told me that I sounded like I was experiencing chronic grief. To some people that won't make any sense. No one has died...

However, we grieved when she was born...we grieved that typical child. We went through the stages and ended at acceptance. Then we grieved again with the seizures and the diagnosis of epilepsy...we lost what we had accepted...now we were "whacked" (my workers word) with another issue and I am grieving again...the loss of anything substantial to work from, the amount of damage we just learned about, the lack of the medical diagnosis. I have to go through this process again...it is really tiring, but I will get through it, I have in the past and this is no exception...

Anyhow, I have my big test tonight...second last night of class....then maybe I can breathe and process a bit more and better...so if I am emotional, and I just break down...I really am not crazy...seriously I am NOT crazy!