Alin's Site

How i would sleep... Rubbing my neck (CLICK ME)

Yesterday I was busy all day, Denise from National Seating came by and got my beloved Stealth 2QCR mounted on my new Permobil chair, yeah the Whitmayer headrest was okay but the Stealth 2QCR blows it out of the water for adjustability, there are so many places you can adjust this that if this headrest don’t work for you, no headrest will until they come out with moulded headrests like they have moulded seating. All in all it took me a good 6 hours to get my whole chair overhauled to go out today which won’t happen due to the trach infection that I will talk about later in this post. It took me so long to get everything overhauled because i was monking around and also sort of sleepily enjoying the feel of the material on my neck… thats autism for you LOL gives you a bit of a delay! You can even see in the picture above that I am rubbing my neck on it hehe!

Soon after she mounted my Stealth 2QCR she had me crawl out to the porch to get up into the mold making machine and she took the impressions. I should have a new back within the next month or so, right now she “Jimmyrigged” my current back with some foam blocks hidden in the seat core and such. It definitely feels better, but the best part is the headrest!

You may also notice that there are wingnuts in the photo above, that’s cause my spasms are strong in my legs and I need screws that won’t pull out so dad the screw genius went and picked some screws from the warehouse, funny enough they come from Headstrom, you know, the now defunct manufacturer of playsets for your yard? So my chair is Permobil, Invacare seating, Headstrom ankle strap screws, Stealth headrest. Funny huh? It’s a hybrid, literally!

Infected

Today I have been prescribed Bactroban for my trach site because it does not look very good. I talk to Doctor Walnut… err Walner on monday to find out if we need an office visit. Hopefully the Bactroban will BAN the bacteria

There are TWO photo series in this blog post click each photo to see them

YouTube Life In A Day Filming Day

I am absolutely sure that if you have been to Youtube in the last 24 hours or even last few days you have seen this weird globe thing and a count down in days. That is because a major independent film maker Kevin Macdonald under the lifeinaday account is making a movie based on clips from 1000 or so Youtube users. No knowing if mine will get picked but it sure shows what happens in a short snippet of the day for someone medically fragile. I changed my own G-Tube, taped it, put it on youtube. Then I answered his questions. If I get picked I will be soooo happy!

Anywho I am sure you are all excited to see me change my own G-Tube, you have seen post change videos but not the actual change. I bring you, the actual change!

Note: in the video I kind of too quiet to hear say “Bill medicaid 5000 dollars for this procedure mom”

Life in a day questions answered above.

A ordinary day for me and what I use and do.

Most comfortable position (closed) pre-therapy

What a pain in the ass… err eye I mean. I woke up today and my right eye was so swollen it was nearly swollen shut, I knew to break out the ice pack and crack open a bottle of high dose Ibuprofen. In a matter of 1 hour it has gone from horrid to a nearly normal state, as I type this I can see out of it and it still feels slightly puffy but I can actually use the bloody eye! I was nearly in a total panic ready to call the ophthalmologists office. We are watching it closely, If I wake up tomorrow with it like this off to the ophthalmologists office!

COMING SOON TO AN APPLE STORE NEAR YOU!!! eyeSwell TECHNOLOGY EMBEDDED IN EVERY iPhone WILL MAKE YOUR EYES SWELL ON DEMAND IF YOU NEED IT TO GET OUT OF WORK OR SCHOOL… RELEASE DATE IS………………… NEVER

In other news today we went to my neurosurgeons office and had to get my Baclofen pump dose increased by 20% due to my spasticity… Thats Spastic Quadriplegic Cerebral Palsy for you… The dose went from 549.7 mcg per day to 660.00 mcg per day. The big problem is that my spasms are so strong in my left leg that it pulled my left ankle strap off the wheelchair halfway and needs repair.

Pads in place with ointment

Well last night was not exactly the prettiest night for sleeping positions. I somehow got myself to have irritated skin all along my trach (the above of it) and along half of my neck! So we are using bacitracin to hopefully clear it up, and obviously better positioning! Last night I forgot to hook up to my vent to sleep too and slept on the wrong side of my body, so my hip hurts too. Tonight will be on my right side with my littmann around my neck.

Night all

Well today we had to be up early to get to the breast centre which I just call the moob centre in my case. We went in and saw the surgeon and then I was swiftly sent for ultrasound where the results came back as the moob is clear of cancer and tumor tissue it is a benign mass. They want me to watch it and get ultrasounded yearly.

Today I got my Baclofen pump refilled which was a easy thing, the usual go in get the belly pricked once, draw out the old Baclofen put in the new stuff blah blah blah come home. But today was interesting, I came in on the EXACT DAY that my Low Reservoir alarm would go off, which means after today I would have 2 days before it is EMPTY! Wow! And they had me scheduled for the 26th, pffth! I’d be in an ambulance on stroke alert by then.

But what really sucks is that our air conditioning is on the blink! The house temperature right now is 80 (as of morning) degrees which is way too hot for me to do much! Ugh, and I get dehydrated so easily. Edwin our guy from Air-Pride came out to fix it, SAME DAY as the phone call was placed! So this is really good news, He came and found our A/C compressor fan was completely CLOGGED with some sort of debris from trees and stuff and so he cleaned it, he said we were lucky that it didn’t blow. It’s gonna take a day or two for the temperatures to equalize in the house. It’s much better in my room now at 75 degrees. (as of posting)

But now for an interesting Public Balofen Pump Announcement, Baclofen Pump Alarms… Psst, if your a PSA nurse and you work on my case, you dang well listen to this video as it might save my ass and your ass.

Me and Shawn, my friend!

A old friend of mine and me reunited thanks to my dads friend being his moms girlfriend or some confusing thing like that, whatever. Anyway we had a lot of fun together talking about things telling the story of what happened since I last saw him in early 2007. We heavily focused on a subject not blog worthy due to privacy issues but it was a subject that helped me a lot emotinally! I might blog about that topic one day but not tonight.

Anywho it was fun and he will visit soon again!

Statistics time for alinssite! we had a small downtrend in visits and views which i owe to the new layout of the site people need to get used to it i expect us to out perform this month next month

usageasjun10

Disabledplanet. i dont know where its headed right nw so i gonna place it as a neutral.

usagedpjun10