I knew I needed to make room for something.....Yeah, well, it's not for my writing. I care about my story. I don't always care if I write it. I hardly care if I write it well. I was the little girl that always said, Tell me a story! I need a place to go in my mind. I need a world to hide in. That's what movies do for me now. I can't think of one good one right now. I need to find one. That's the problem with me......I always want a new story. I want a new story, tell me another one. I want something to carry me away for a while. You know the time it takes to watch a movie is the perfect amount of time for vacationing from your own reality. Too much of a break and fuck it is too hard to come back.


The new wheel chair is awesome. It rolls and you have to keep up with it. The old one you had to really push.

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Originally uploaded by jippyjabber.

I learned that this chair will be in my life a lot longer than I thought.

I learned that in order to help his leg, I have to give him medication that will make everything else worse.

I learned that it might take us 8 months to get him up to the best dose.

I learned that there is something wrong with his eyes.

I learned that he will have fainting, fatigue, depression, and all of the other symptoms will get worse from puberty.

I learned that he had has seven unexplainable or not very well understood medical conditions.

Mytochondrial disorder

Pain aplification disorder

Autism

Complex Regional Pain Disorder in his leg with foot drop

Photophobia

Phonophobia

Rabdomyalosis ( twice so far which means it probably will happen again)

One doctor told me, in his clever little way of saying things, that he's never had a patient with _ _ _ _ and ___ so we don't know what will happen......Then we all laughed like crazy people. We laughed a lot becuase he knows it heals me. It brings me up, so the bad news just knocks me down to normal.

Oh and we need an EKG with in two weeks because heart trouble including failure is our biggest concern right now.

I know the EKG will be fine. Look at him he's too cool.....His heart is made of gold. He's helping me look for Coke Blak

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Originally uploaded by jippyjabber.

I am definetly moving. I can't do this on the second floor. It has to be. But the new medication, we tried that once already. It's bad and I'll spare myself by moving on.........

I am ready......I can get ready for everything but........ I have to keep breathing when he's suffering. I have to channel the good and I can't feel everthing that he has to feel. I must do this differently. I can not bare his pain. I don't know how he does it. I do not know how he can have such a love for life. He's so happy. He loves Hot wheel cars.

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Originally uploaded by jippyjabber.

I am tired, just thinking about this Behaviorial plan makes it worse. I just need to re-evaluate the plan. I also want to capture all the behaviors on film. I have most of them. The mitochondrial stuff, isn't reflected in this plan. Not enough to be efficent. I am still learning. I know that the Holidays have taken a toll on him. Me too. I watched lame tv and well it helped a bit. I want the next year to be more fun for Zach but I don't want to over do it. I can barely post on time so I decided to find something I wrote already. Ironically, I ran across the very thing that is running me down. I am worried about Zach. Just that nagging worry that is underlying and dragging you down. I made it through Christmas. now New Years, and then it's his Birthday. It's a time of change and usually a big growth spurt for him. What will this New year be like for us? I need to think this through. I need to do it without getting stuck in a loop. I mean I can't look for answers. I need to try new things. I need to be ready for these things to NOT work and then just try something different. What to do about Zach? I just need to remember that he's got his own soul and this is his life's karma. It's our life but it's something we just live and take the journey together. It's tricky to make change. I can't force things as much as I want to CONTROL the situation, force never works.
I have the old plan listed at the bottom. You know the sorry truth is that I need a Jippy Plan too.

WE NEED TO HAVE MORE DAYS AT THE ZOO!



Pain Management Plan

-Determine if behavior is a pain response or not
-Give medication according to prescription

Behavioral warning signs with possibility to redirect or may progress into need for medication

- Facial grimaces
- Hand twisting
-Slightly jumping up and down
-Body twitching
-Increased hand persevering
-Standing and sitting repetitively and quickly
-Agitation noises
-Vomiting or refusal to eat

Determining Pain Behavior

- Redirect and watch for signs to return with in 20 min or less.

- Asking, Do you need medicine?


Behavioral warning signs for immediate medication

-Rolling tongue behind teeth
-Biting hands
-Hitting head
-Verbal complaints


Comforting and Calming

-Give cold cloth to bite on

-Give medication

-Encourage him to drink water

-Place him in bean bag chair and try to have a calm quiet environment until medication takes affect.-

-if he is lethargic and unmotivated. He needs juice and candy immediately.
- give him a nap. Let him rest.
-make sure he gets some activity daily.


-Evaluate

-resume day
-arrange for him to go to hospital.