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.

Knock Knock... Protective Services

I am here to help you he said....and he was.

Last Friday I was in the hospital again and things did not go the best....Social Services was called
......Well anyway , 

things are o.k. .....the fellow showed up during my morning routine today and when my Mom was done feeding me he sat in my room and talked to me,

To make sure I was o.k.

He was very very kind and I have no fear.

He wants to help my family and me as  much as he can.

Thanks again for praying for me everyone :)


Sometimes I am unable to speak for myself and even though one of my parents has a paper that says they are to speak for me, some one a long the way disagreed .....stuff happens.

Anyway ....I am o.k.

And yesterday I was able to draw a picture for nurse Lola who does my IVIG.....her request a dragonfly on a daisy. ( but she might read this so I am not going to put it on here)

I feel like seizures are beating me up.

Because......that is what they do! 

So I  still feel beat....tired and worn.

But I have peace.

Oh Rileys...Oh They Have Come Again!

The Riley reunion has been going on and it has been good to see everyone!

I really miss the ones that did not come though.

Particularly Ashley.....I love you !

And someday I would like to meet you Tom.

This year I can't do as much as I want, but I will do as much as I can.

Anyway.......

When I came home I found out I had an appointment with a surgeon to see about an issue I have with my tube....the doctor was not comfortable working on it yesterday.

That will be tomorrow, I am glad though because it is driving me crazy and it should not be a big deal to fix.
It NEEDS to be fixed.
stupid granulated tissue junk. ( If you wanted to know).

I am thankful I have a family that cares so much about me :)

p.s. I borrowed the title from a song O'Reilly  OHHH  O'Reilly  but since I changed it, copyrights should not matter.