MJ Update - What a Week

September 27, 2006

Hi Everyone

This update is from the past (almost) 2 weeks, sorry for the delay, but life

has been crazy!!!! The update is written from 's point of view as I

am too tired to try to type it alllllll out!

Well, MJ has her first cold in college...not really a cold though. She

has been having bad allergies the past week and doing great with them, but

Thursday (9/21) was a bad day. Her psychology class was moved to the new

Joshi Center for class and when we got there, we quickly noticed that it was

freshly painted (almost the whole building was). I notified the professor that

MJ is allergic to paint fumes, who didn't seem to care until I said that MJ

cannot stay in the class today as she will get sick.....well, too much exposure

had already occurred....after 2 hrs, she had a sore throat, headache, slight

fever and junk in her trunk! GRRR! She is started an antibiotic Friday

morning (we can't start her at night as she gets sick at night). It also

didn't help that Thursday, during her neb, we had a fire drill! We missed

it....I got her up and in her chair and ready to go out, when it was over, so

back

down she went.

Sunday: 9/24: We got all the stuff out of her lungs and it is just in her

head now. She went to class and the grocery Friday...we already have a

routine down. Saturday we were off to get a table and chairs...if anyone came

to

visit, we had no furniture to sit on, so everyone would have to stand. We

found a great folding table andchairs and then had dinner at Grandma June's.

Today, as in Sunday, we were doing homework because Miss MJ decided to

procrastinate...We've already done Precalc (and MJ had a shower) and will do

Sociology in a bit. Maybe MJ will send out a full report tonight, if she has

time

and energy. (Guess what, no energy there)

Yesterday, as in Tuesday, 9/26 MJ woke up feeling crappy, but decided that

she was okay to go to class, so we went. In Sociology class, about halfway

through, her alarm on her vent went off and freaked out the teacher....the

teacher asked what was that, to which MJ said, " It's just me! " , so the teacher

was still freaking out, and asked if she needed to call 911 or stop the class

or what! I said, its okay, and MJ told her to continue....(the battery we

had just charged, was dead!) So, I fixed her vent and class went okay. After

sociology and precalc we came home and MJ leaned back in her chair (because

her butt hurt all day, the hip bone was sitting weird causing major pain and

problems) and her vent alarmed again, so I changed the tubing and turned her

vent on to which the vent started breathing on its own and alarming

continuously!!! I sat on the floor and realized that it wasn't the tubing, and

it

wasn't the battery, but the vent was malfunctioning and broken!! (our 3rd vent

since May with the same problem)......so, during our lunch hour (actually

almost 2 hrs) I spent the time calling New Jersey to get a new vent sent out

and

putting MJ's bed vent onto her chair....Alas, I was starving since I didn't

have time to eat! We quickly hurried out to the van to head to her Seminar

and of course, there was NO PARKING!!!! So we had to park farther away on a

downward slope, which almost caused MJ to roll off the lift in the up

position......but we made it to class, in one piece, and we to watch a movie

(Crash)

but the projector wasn't working, so we moved rooms and were in a small

elevator (Don't worry, it worked) with 7 other people, of which 5 were sick,

and

went to the new room. The movie went well, as we both had already seen it and

left early so we could go get the van and head across campus to Psychology

(back to the old room with no paint fumes...we drove over to psych, found a

close parking space and went to unload...........and guess what happened????

Well, MJ got on the lift, and I started putting her down, when all of a sudden

the lift jumped/bounced/boinged an inch and made a horrible noise but the

lift continued down fine and went back up, (MJ was fine) but to our dismay, the

motor arm that controls the fold mechanism of the lift was laying on the

floor of the van!! So, I did what any normal person would do, pushed the lift

into the van and shut the doors and went to class!!! We got into class and I

called Tim ( " hi tim, the vents busted, the van's busted, MJ's sick .. and

I'm starving ... how are you ??? " ) and said we had a slight problem

(understatement of the century). After class, we went out to the van and I was

able to

make it work...I put a bungy cord to hold it together and got it to go up and

down and the van doors to open and close and only had to manually

fold/unfold the lift.... When we got home, I noticed it pulled 2 screws out of

the lift

and broke the metal plate that holds the arm to the lift...we permantely

lost one screw...where it is, who knows, but we were able to get home safely!!

After MJ laid down, she emailed (thanks so much, they were a big help)

and found someone locally who came over today and temporarily fixed the lift

until we can get it in next week to get a brand new lift (MJ had outgrown the

lift many moons ago). We also had a note on the door that said we had 3

boxes at the office(Heaven forbid they knock on the door when they leave a

note)....so we went and met the van guy, and when he was done headed over to

the

office to get our 3 boxes (MJ's replacement vent, a shampoo tray, and a box of

blankets from Janis). Tonight, the van is working (no guarantee if it will

hold together), Tim is working with them to schedule a day for them to put in

a new lift, since they have one in stock and to get a loaner van while they

fix our van; MJ's new vent is back on her chair and ready to go, and we

absolutely fell in love with the blankets that Janis and Joann made for B4SMA,

and

MJ's Psych paper is done!!! So, that was our day!! Fun, exciting and

extremely stressful!!!!! One of those days, that makes you wish God didn't

trust

you so much to give you that much stuff to handle!!

MJ typing again...I will try to update more frequently so that updates

aren't so overwhelming, LOL! Attached is a recent picture of me. Enjoy!

Quote of the Week:

Pandemonium did not reign; it poured. ~ Hendrick Bangs

MJ

18, SMA Super type I

" People are often unreasonable, illogical, and self-centered;

Forgive them anyway.

If you are kind, people may accuse you of selfish, ulterior motives;

Be kind anyway.

If you are successful, you will win some false friends and some true enemies;

Succeed anyway.

If you are honest and frank, people may cheat you;

Be honest and frank anyway.

What you spend years building, someone could destroy overnight;

Build anyway.

If you find serenity and happiness, they may be jealous;

Be happy anyway.

The good you do today, people will often forget tomorrow;

Do good anyway.

Give the world the best you have and it may just never be enough;

Give the world the best you have anyway.

You see, in the final analysis, it's all between you and God;

It was never between you and them anyway. " ~Mother

http://www.caringbridge.com/ny/mjpurk - My Journal

http://www.our-sma-angels.com/Margaret/ - My Original Website

http://www.mjthesmaqueen.com/ - My New Website

http://www.our-sma-angels.com/b4sma/ - My Organization's Site

http://www.caringbridge.org/ny/b4sma/ - My Organization's Update Site

September 29, 2006

Geez--what a week is an understatement! Glad you're doing OK now. I liked the

Mother quote a lot, I saved it to my documents file. ~a

TWEETYROLL88@... wrote: Hi Everyone