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Archery, Sleeping in my wheelchair, Trach log, Bowling pictures, Head array unboxing coming, Songs delayed

Posted Oct 22 2012 12:00am
Chris likes switches. I like it when he messes with mine its fun

Chris likes switches. I like it when he messes with mine its fun

I had lots of fun at Archery this week, I actually shot a bullseye too! My muscle tone is getting lower which is result of the CP and Rett Syndrome. When the Rett worsens the CP does so it almost mirrors a motor neuron disease. But whatever, due to worsening spasticity and issues I couldn’t use a regulation level bow because the cord resistance was too freaking high!

Pulled my nice warm rubberized nylon raincoat on for warmth

Pulled my nice warm rubberized nylon raincoat on for warmth

I find it so comfortable in my wheelchair that I tend to like to sleep there when my back is giving me problems or when my insomnia is giving me issues. The sensory issues really die down when I add tight straps to my body and a super soft silky headrest on my head. Ahhh very addictive to rub, rub my head till I fall asleep.

11:39 AM STRAP IN
11:46 AM DEPART PGH
12:12 PM ARRIVE LGH
12:22 PM REGISTERING
12:26 PM REGISTERED
12:28 PM WAITING ROOM AMB. OR
12:55 PM DELAYED ORIGINAL TIME 1
1:56 PM OR ARRIVAL
2:31 PM POST OP PHASE 1
3:26 PM POST OP PHASE 2
5:30 PM DEPART LGH (Approximated)
6:18 PM ARRIVE PGH (Approximated)

Some times were approximated because I forgot to log it in the phone immediately. Anyway it was a rather uneventful trach change but we really need to keep me on this monthly schedule as my old trach starts to smell horrendous about 1-2 weeks before trach change time. Either its from the pseudomonas bacteria or something else infiltrating the tube but regardless it gets to the point I have to hold my breath when suctioning, which ain’t good. It also makes my secretiosn totally yellow, like I have a infection but I don’t.

Me Annie and Cheryl

Me Annie and Cheryl

I had lots of fun bowling yesterday my high score was a 112. The only issue I had yesterday was Cheryl was doing a real number on her harness in terms of slobber and Annie was back for the first time and with a shiny new Neoprene harness, not just any type but smoothskin, kind of like my NRS Mystery top. So as with all things shiny I had to photograph it like nuts. I did the same obsessively with Annies harness in the summer bowling, it’s something I will never be able to get around. My autistic fixation with harnesses and then on top of that shiny ones is something that one can change about me. As for Cheryl that was wet shiny spandex coated neoprene which is quite similar in type to what Mel1 my harness is made of and when slobbery it is very eye catching. And again I had to photograph. But fret not everyone, I got lots of smiles too. Annie Cheryl and Tony were all really happy around me this week. So I have titled this week The Strapped, Smiling & Slobbering Week.

Me with my new ASL-Inc Stealth Ultra Head Array adjusted

Me with my new ASL-Inc Stealth Ultra Head Array adjusted

I got my hands on an ASL-INC StealthUltra Head Array. Just from the sound of the words there you should know this thing means serious business. Well it will once I get the right interface box for it. I currently have a box designed for chairs made by Invacare. I need a box for Permobil powerchairs. But this device will allow me to control my entire wheelchair using nothing but my head. Which will come in very heavy use since it is all too common for me to have spasms and stuff that can interfere with driving my wheelchair via the stick. Does this mean I am not going to drive a stick ever again, absolutely not. I am going to have a switch fitted so I can switch between Array and Stick at any time. I have unboxing photos and video coming soon.

From the hospital? Come here looking for Walking in the OR and Breathin’ In Sevo? Well thy are delayed, might happen by Thursday.

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