Better

 I have been doing much better, had an extremely busy day yesterday and was not able to go to church today.


A surprise birthday party for a dear friend and a wedding that my sister was a bridesmaid in.

I am ever so grateful that my Dad does not mind carrying me up a lot of steps ..like a flight and he carried me a long long way through grass too.

Good thing I am not very heavy, sometimes I wonder if that's why God keeps me rather small so that my Dad can carry me?

Daddy is tough and big.

A Miracle ???

  Yesterday 2 of my siblings and my Mom and I got our eyes checked. I was slightly worried as my left eye has been very hard to focus and blurry for a few months.

It turns out it got better!!!

The eyeman thinks it didn't get better , he thinks he messed up.

"It's quite common with little kids that they get glasses that are too strong for them and no one can tell till later when their eyes get worn out from trying to adjust ." He said.

"I am not a little kid". I said, either he didn't hear me or he didn't know what to say.

Eyemen just seem to think that eyes just don't get better. He is still a good doc.

Anyway I am going down 3xs on the left side.

I still like to think it got better.

I am getting new frames too as my old ones are a few years old and only cost $9.00, last time I saved my old ones too long they broke and then I was stuck not seeing properly , I also fall on them and bend them up so..I am getting some new ones.

Yesterday was a very bad day for my mom, her back hurt her so bad she was white.

:(


I also had too many seizures and that made the entire day really rough.


Well today is a bit better so far .

Oh, here is something funny: I was with my Dad and he was helping me out of the truck and I lost my skirt!!!  It fell down far. I don't think he even noticed till I said something!!
 Why don't they make kids skirts with adjustable waists like they do the pants ?? I mean like longer skirts.  It is so much easier to get a skirt on than pants when you have a messed up leg, unless you lay on the floor. Oh well. I guess it needs sewed in.

The Man With The Staple Gun

  As I set getting an I.V. , a man with a staple gun sat across from me.

 Mommy left for a minute or so.

  I had a seizure.

When I came back the man with the staple gun stapled 20 pounds of advice papers to my chest.

Mommy came back and the man pointed to what he had done and said, " she needs that."

Mommy said, " well I don't know about that but my daughter needs to breathe , thats for sure".

Mommy tore the 20 pounds of advice off my chest, and I felt much better as I could then breathe.

I had become nearly purple.


As we left Mommy turns to the staple gun man and says, " We do the best we can",

We went home.

I Am Famous Now I Guess....

http://www.ironistic.com/local-art/

The flower drawing is my work :)

Yesterday I went to my grandmother's birthday party....

My friend played some awesome music!!! I was really really hoping that his daughter would be there ...but it was her grandma's birthday !!!!!!

And here is my friend, Prince, in the pink platypuses purse, he likes it and stays calm in there! ( the platypus is a webkinz).

I have been really rough still as far as seizures go ...I have had 30 something nearly everyday and 38 on the worst day. Today I am going to up my dose of Valproic Acid...hopefully I will not bleed. I have mostly been spending a good deal of time sleeping.

A Small Lizard Made From A Thousand Glittering Beads...

.... A gift from my best friends who came home!!! Oh I never wanted them to leave , I wanted them to stay for dinner!!

I missed them exceedingly.

Hugs and more hugs and more hugs.

They will be around for 6 more months...then they go again.

But for now we are in the same country. 

Pink Platypus

 The night before last when I was going to bed,
a pink platypus in a pink purse was on the end of my blanket!

My sister always knows how to make me smile.

I hope she never moves away far......
What would I do without her?

I Made It To Monday

  The blood work showed low blood counts but thankfully my liver was o.k.....
The Dr. said that I could slowly go up again on the Valproic Acid after I take some vitamin k1 for a while.

Hopefully, that will be o.k. because I can't deal with 30 something seizures things a day very well.

I have very little to say, except someone at i.v. told me I had to be brave......well, I get tired of people saying stuff. I really really REALLY try to be tough and everything but sometimes I feel awful and well......Why... OH, WHY... must one always have a smile on their face when they are exhausted? 



I will be o.k.

I Told My Mommy...

 I cannot stay on a lower dose forever. 27 seizures and I can barely drag myself out of bed. I feel like I want to sleep forever.
I have been worse but this has hit me hard.

Hang on, she says...hang on till Monday.

I will hang on Mommy, I will hang on...as long as possible.
 
Well one thing is for sure , the doctor had better have some brilliant idea or I shall explode into tears of frustration and distress.

Even my favorite white- coated person is still a person and sometimes does not know what else to do.

I.V. .......

It went alright ,I saw some friends.

I was exceedingly tired.

The 2 hour drive home seems longer than when we were going to I.V.

I guess I was just tired.

4 hours is a long time in a car, but I am home .

Home :)

Glad

 Today I found out my best friends will be coming home in about 9 days ...I am extremely excited!!!

I missed them too much.

I felt rather lonely.( lots of times)

How can I wait? I am just so excited!!!

And the sun is out today!!

Wednesday

 I had a ridiculous amount of seizures but have had even more the days afterwards .
Daddy had a party at grandpas ...it was o.k.
I would of been happier if someone brought me home after an hour or so.
Anyone can smile and still be wanting home.
Yes , it was still fun, but enough was enough and Mommy came and got me.

Still Not Good

 Yesterday at I.v. Ralphie was there and the lady with the red bag.
They gave me hugs and get well wishes.
Today I got blood taken... only 3 vials  instead of 18.
I feel exhausted.
The plan is to up the medicine again slowly once I get some vitamin k1 and hopefully I will not bleed again.
Drugs are hard , but without it my consciousness flees.
Someone told me I was damned if I took the drugs and damned if I didn't ...that seems increasingly true.
Well , it is what it is.

Not Good

 So yesterday I was really feeling the decrease of my medicine and had a LOT of seizures in the evening. I rested all day because there was a wedding to go to in the afternoon.
I felt really awful.  
Today I slept all day. Tomorrow I see the doctor.

Nasty, Nasty, Yuck....I can do nothing about this.