We had a big software glitch up with our caching system and its all fixed now. any more problems report them to me
thanks Emily for reporting this issue to us swiftly and allowing us to swiftly repair it!
We are repairing the caching system right now.
ATIA Logo
This year I will be presenting a keynote speech at ATIA 2010 Chicago. Click the logo above for more info on WHERE and WHEN the conference is. I speak October 28th THURSDAY at 2:35 to 3:35 PM in Room E. The tickets are expensive but DVD Recordings of my speech will be available here on my website for all to buy! $15 dollars a copy. NOT FOR RESALE.
Autism Society News Thingy
In other RFB (Really Effin Big) news I GOT PUBLISHED IN AUTISM SOCIETY NEWS LETTER. CLICK HERE to go directly to my page on their site. I am on their site permanently click the picture works too, but just in case it goes down a copy of it is on my server HERE) I got published for my sensory disorder and cerebral palsy and autism and unique case. They did not edit my speech much aside from grammar. They took a cool photo of me in my wheelchair with my harness and leather jacket.
Doing a treatment. tight and warm. i love it!
Yesterday I got The Hill-Rom The Vest System again, this time I am not letting anyone shoot off a Discontinuation order until I research it formally. It didn’t cause my Baclofen pump to fail. The Baclofen pump just failed on its own. Anywho I am back to bringing up astronomical amounts of secretions while also getting some deep pressure as all autistics crave LOL. Last night I forgot to take the vest off but turned off the machine and disconnected everything and fell asleep, oh well. Click the photo above to hit Flickr and view more photos of my Vest system. Also below is a video of me setting it up on my own and using it. Just giving a short demo… IN HD!
Well you can make one fly if you laugh hard enough. Mine almost flew off, I was drinking 7-UP and had to spit my drink out into my suction and take off my trach cap BEFORE it went flying because Mom did something horribly funny. Yeah this is blackmail but GET OVER IT.
Mom: Using Google Maps to find a place.
Mom: Can’t Find it
Mom: “THIS THING SUCKS. I’M IN NEW JERSEY NOW. DAD YOU DO IT. I’M GONNA GO BUY SOMETHING NOW”
The GI appointment was canceled since I am sick with this ear infection. I did not get to sleep until 4 AM. I just woke up at 11:30 AM.
Today we mainly focused on my ears with Dr. Walnut… I mean Walner.
We arrived at the office at 4:10 PM and got taken into the operative At five o’clock the minute later Dr. Walner came in and examined my ears. He then said I had excessive wax build up in my right ear. He took us into another room which had a microscope and specialized suction pump. He inserted different suction catheters, into my ear while watching with microscope what he was doing. Doing this he was able to touch my eardrum and clean out all of the Wax. I do not have an ear infection.
The code red has been downgraded to code yellow.
A quick picture of me smiling
Notice the red thing on my tracheostomy in the picture above? You can click the picture to view a few more. What you see there is what I got from my doctor today. It is a tracheostomy cap. That allows me to bypass using the passive humidifier (HME) and my Passey Muir Valve (PMV). It completely seals off my tracheostomy tube and allows me to breathe normally through my nose and mouth. When secretions bother me I can either just cough which does not work well for me or I can take the cap off and suction this makes things a lot easier for me as they no longer have to hold my finger over my tracheostomy tube to talk.
You have been warned this is a long post.
The Vest System and Vests
Okay so they changed the model number to 105 now and made a load of updates to the way the machine works and stuff made new vests blah blah blah. Found out it was NOT THE VEST that caused my Baclofen pump to stop working earlier this year and had me rushed into the hospital with a big “STROKE ALERT” being called over the P.A system.Was the pump its self that caused the code blue. Fall and winter are coming and Tis the season to get infections. My secretions to begin with are irregular. Totally clear one day, the next day just my drool is causing me serious issues. Normally your drool is swallowed into your stomach, for me it either comes out of my mouth goes into my stomach or into my lungs, theres two extra places added. Anywho we decided to intervene before anything goes wrong and while I am still healthy get the system going again…(minus the ear infection… ill talk more about that LATER)
Thanks to Mike and AJ and Loree I got my own “Swirler” thingy. I made this video demonstrating it. Thanks to my autism I got too attracted to the lights and kind of ignored how long I made the video. So you get 44 minutes of seeing me being real… well… real…
We are in CODE RED status due to a questioned ear infection. Tomorrow I have a GI appointment to find out when I get an endoscopy and also to work with my feeding setup.
Then I also got Dragon Dictate for my Macintosh but I don’t have it hooked up right now because we are in a storm warning and I just wanted to get this thrown on the blog quick before the power goes out on me!!!
August brought a slight up-trend in visitors overall. Unique visitors were in-line with expectations. September is half over expecting a very mild month for visitors and hits this month.
Alinssite August 2010 stats
DisabledPlanet September 2010
Alright everyone, ya have not heard from me for a bit. That’s cause I have been busy with a lot of things! Some old things are in this post but most importantly will be the third thing mentioned in the title Photo-Optic Stimulation with AJ
So I was asked by a few people “How do you stand not getting your tracheostomy tube changed routinely like normal people. And only get it changed every 2 months under general anesthesia?” Well I answer your question right about… now… anyways my tracheostomy tube is a Shiley 6.0 DCT (Dual Cannula Tracheostomy) that takes a 6.0 DIC (Disposable Inner Cannula) The combination of devices lets me change my “Trach tube” any time on demand! I get a plug and we are out in the wild at the hospital, just pop out a new cannula and swap! Swapping them is EASY too!!! Check out the video below!
Moving on I reveal an interesting thing, you all know that I got my 2QCR Headrest put back on my wheelchair, and I had to adjust it all. Well, that adjustment took 6 hours when it probably in reality would have taken an hour or two but I got so engrossed in my sensory self and rubbing and touching the things i love about my headrest and harness, so silky so soft so awesome, and good smelling. Just to let you know that for some reason I do name objects that I have a special liking for, this is only specific to objects that are REALLY special to me, like my harness headrest and stethoscope. respectively Mel Mel2 Mel3. Anywho you may call me “Objectum-Sexual” However I refuse to be called “Objectum-Sexual” because that refers to a sexual attraction to the objects. For me they are just very special to me, and they do have a life in some way or another and communicate with me somehow through my brain (telepathic) and I have a love for them, therefore a friend of mine came up with the definition of “Objectum-Affectionate” which is me! In the video below you can see me enjoying myself with Mel and Mel2, getting quite relaxed.
If you don’t like me for what I just described then get off my site. If you are intrigued and want to learn more, watch the video… Still got questions after watching it? click Contact Me and ask away!
So far, yet so close to AJ... I want to physically be there
The photo above is taken by Mike, who is a prolific Flickr Photographer and Webmaster of ajpatnode.com AJ is now a best friend of mine, it all happened so fast but we have come to love each other quite closely because of our many similarities. We have few differences, age, movement, and speech. thats it. Otherwise me and him have so much in common, and yet I just discovered that I am HIGHLY photosensitive, not seizure wise but photosensitive in the meaning that photo-stimulation makes me really happy and very comforted, its a sensory thing. He is sending me my very own “Swirler” which is a type of photo-stimulation gadget that I will get on friday and of course will take photos! I am going to be figuring out where to mount it in my room. But anywho you probably want a video of me and AJ so here it is!
The code was declared at 4:28 pm one hour after giving a suppository In hopes of getting a bowel movement today ambulance arrived at 4:32 pm arrived at hospital at 4:44 pm. No bowel movements since at least 4 days ago. At the hospital they gave me a special enema and left me to do my business on a Commode. I did it!!! The bowel impaction is gone!!! Hopefully I do not have a gastric blockage, tomorrow I have to take a sample from my G-Tube and make sure its clear bile from my stomach so no food after midnight clear liquid only.
So yeah, I got ambulance’d there and back… Another code to add to the “Great book of codes”
I graduated High School online and got my diploma, it’s all internationally accredited and Rush University will accept it. I want to become an Anesthesiologist. My graduating GPA was 3.84 and my “Finals” Battery of testing was 87% or something like that, I will have to go back and look at the graduation E-Mail but I am too excited!!! We receive my documents in 10-14 business days as they need to process it through Illinois Department of Education and such.
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