What Can I Do?

So I have had extreme difficulty with the g-tube , I had a lot of issues before it was in now it hurts worse.

If you have a stomach spasm when you have no tube it is bad enough but now when that happens I can barely stand it.

Also......my stomach prefers to not empty.....it gets so full that I am worried Mommy won't be able to get the drugs to go down.


People thought I was just odd that I never ever wanted lunch,that I did not WANT snacks ....breakfast normally would consist of an apple in the past and nothing until dinner. I just felt so full. Last year I noticed it got a lot worse ...I wretched a lot .

I would tell people my stomach was still full from everything I had eaten before ....and they told me it was impossible,  that I just did not want to eat.

well now I have at times ....explosive proof .

Tube feeding, painful and messy and gross.

Also I am nowhere near where they wanted me to be for calorie intake, less than a fifth usually.

Then there are times when I do a bit better , I think I never ever will fit as much stuff in there as they want .....but sometimes my stomach empties more often and have less pain and mess.

I don't see any easy answer for  this......Not sure how far I am willing to go.

Part of me wants the tube out...that would mean death, I think no matter where you moved the thing if you have as many spasms as me it is going to hurt.

I guess I will just have to deal with the pain, I hate pain meds with anti-seizure drugs.

I really do not like it at all, I mean sometimes, like at the hospital it is a welcome relief ...but not everyday....

I feel like my brain is slower than normal.....I am angry it has taken me a week to read ONE American Girl book.

I don't want it to go slower.....NO.

 I will be seeing the Neurologist this week to see about VNS.

I will also be measured this week hopefully ,to get a better wheelchair that supports me properly.

AND....Saturday HOPEFULLY I can keep away from seizures and be at the art show at the Moonshadow Cafe  ,  I will go home before I get too exhausted and Daddy will be in charge of the booth after that.

So right now thats how things are going.