Its Halloween today, decided I would throw up a blog post. I am not doing anything this year. However, I do have a good plan for next year, just fall asleep in my powerchair with a sign that says “coma patient 5 years and counting, this is what happens when you sniff too many permanent markers.” And ill have the candy bowl in my lap. Kind of like one of my friend’s dad who would sit in a lawn chair and look totally dead, very authentically dead, and then jump and scream when you touch the candy bowl, that one scares the crap out of me every time, only difference with me is I wont jump and scream. The idea would work perfectly since none of the kids around here “know” me so they would think I'm actually in a coma.

Anyone have a good plan for the 2009 Halloween? Leave a comment with your ideas for my 2009 Halloween. Ideas should make use of the powerchair in some way. For example, I could have a cow pusher on the front and attach several wagons to the rear with scary looking body parts, and behold the haunted train of death!

As you can see I am now utilizing Google ad bars to help generate income. They will flash up links associated to the text on the page you are looking at, make sure to click on a link if it interests you.

DO NOT CLICK JUST TO GIVE ME MONEY, AS THAT CONSTITUTES VIOLATION OF THE ADSENSE TERMS OF SERVICE. ONLY CLICK IF YOU ARE INTERESTED IN THE LINK!!!

The ad bars will stay fresh by changing the topic of the link to another topic related to my site every so often so make sure to pay attention to the little blue bars.

Remember, I will never resort to pop up ads; I hate them. Banners are one thing. Annoying the hell out of people with pop ups is wrong.

Expect these little blue bars to show up in different places across my site, each bar will host different topics for you to explore.

The dealer came today at noon to take my measurements and collect the papers. He totally skipped over the functional evaluation, he took one look at me and said, “You need this wheelchair, big time!” Afterwards I made my admission that I am a powerchair and assistive technology geek, we went directly into a long geek talk about powerchairs and had a bit of fun for the next hour and a half. It took only 15 minutes for him to do the measurements and data collection. He stayed till 1:45 PM. When you put two powerchair geeks in one room expect a very long conversation that could go on for days. Sadly he had to go to another appointment; otherwise, he would have stayed all day and geek talked with me. We both really enjoyed it, and he said, “I am going to have some fun with you!” I said, “And here I thought today was going to be a nightmare!”

The really cool thing is they are making my moulded seating system right in Skokie.

He did say that he will want to add a few more things on top of what is in the justification, mainly in postural control systems. One of the major add ons will be chest harness straps to hold me up correctly. Chest harnessing will be a very accepted addition to the positioning array as it will allow me to be able to when needed continue to be correctly supported while not in a tilted position.

Expect frequent updates.

We have completed the initial data collection with the dealer this week and tomorrow is the day they come out to take my measurements and prescription along with the justification report. They will then submit it all to the insurance company and within the next week or two we should have word on coverage. Hopefully, it will be covered as it has become time critical that we get me in this powerchair as even my ability to get around in the house is nearly gone, I can barely even make it for 5 feet with major assistance now, and the report was done when I could make it 10 feet with major assistance. If the powerchair is not covered by the insurance, we will likely have to do drastic financial actions to be able to take the major hit.

I am hopeful that if this is covered I should be up and running by Christmas day. Stay tuned for updates!

As you already all know we have begun working on, hopefully getting the powerchair through the insurance company. Hence, I have begun to make preparations to the site for the photos. The About Me page being no exception, I have added a “Before” heading over the October 2006 photo and an “After” heading over the soon to be picture of me in my new wheelchair! All of us over here are hoping that I get it sometime around Christmas. “Now that's what I call the ultimate Christmas present.” As soon as we find out if it’s covered or not and get a delivery date you can bet your butt that there will be a big ol’ countdown clock going on the front page of the website.

Remember, we still need help with funding all of the equipment. The powerchair might get covered completely or partially or even not at all. We still need to get a converted van with a lift. Make an array of modifications to the house including a ramp on the front door, widening doorways, bedroom modifications, and more.

I am finally withdrawing the declaration of me being sick. Although there are some symptoms left I have decided that this is not truly an illness; otherwise, the doctor would have been able to diagnose it. It is definitely a progression signal.

Anyway onto what this post is labeled for. As you may already know I am extremely underweight currently as of today weighing 89 pounds. On may 16th when I went in for an endoscopy I weighed 97 pounds. The reason I just continue to loose weight is pretty simple; I can't eat. I can eat a few things, but I can’t eat enough calories on my own to be able to maintain / gain weight. Thus, I am adding a new tasking order to my board. As soon as I get up and running in my powerchair I am going to begin working on getting a G-Tube. You are probably sitting behind the computer wondering “Why does he want a G-Tube?” The answer is simple again, I want the G-Tube so I can enjoy my food again and not have to fret over the fact that it is just plain impossible for me to get enough calories on my own. With a G-Tube I can have two options, either mom can do intermittent feedings during the day like at meal times, or I could have a special pump hooked up at night that would put in 2,500 calories overnight. I don't know which option I would pick. The intermittent feedings sounds good but that 2,500 overnight via pump sounds awful good too. This is not a critical tasking order... yet. As of right now I am setting the goal that I should have a G-Tube in within the next 6 months.

Explanation of the picture above, that's all you’re going to ever see of the G-Tube, just that little connector. A cool thing is a few days after insertion you don't even feel it there, only way you can tell its there is by feeling for it or looking down there.

Well, as you can obviously see it’s been a late night for me. I am going to try to go to sleep now!

My grandmother lives out in Florida, Fort Lauderdale. We could drive there once we get the lift put in the van, but driving is time-consuming and may create a problem because of my complex medical needs. I was thinking about flying but when I heard that you can’t fly right in your wheelchair I was like forget this crap! So I decided that we would likely have to drive. But, when I was browsing through Yahoo answers I found a question “Transporting a baby to either Cleveland Clinic or Columbia Univ. That's on a vent?” And found out about Mobility Air Transport (MAT) their planes have a lift on board and have proper approved securement to allow a passenger in their powerchair to ride right in their powerchair without having to do any transfers. This would work beautifully with me because of my constant tilt axis requirement. Their fares are also lower than a regular airline because they charge less the longer the distance and charge no airport tax, landing fee, tarmac fee, or any of that. You also don't need to deal with the sights and sounds of a busy airport which agitate me because I am autistic, because they fly to any of the 5,000 airports in the United States and international airports. Another great thing is you only need to arrive 15 minutes before your scheduled departure, no security checkpoints, nothing, just drive up get on the plane and FLY!!! I am going to talk to mom and dad and see how we are going to get to Florida, either drive or MAT. Guess which one i want... MAT ALL THE WAY!!!

Now on my sixth day of being sick. Symptoms appear to be marginally better. Though the spinal and hip pain appears to be worse! And my spasticity is really bad especially my spinal spasticity.

Something that doctors have not investigated yet but me and mom have found is a possible cervical bone displacement as when I felt my neck last night we noticed that the C2 vertebra (spinal bone) is AWOL. We also noticed a pretty obvious scoliotic curve in my cervical spine. We may be scheduling with an orthopedic soon for new full spinal X-Ray series anyway, We will alert the orthopedic of this issue so that they can do special X-Ray series on my neck. Cervical spinal problems are always not a good thing as the cervical spinal cord is extremely sensitive and should a bone or something compress it quadriplegia can occur. Hence, we will be making sure to get an appointment as soon as we can.

I am still sick as of today. The symptoms are currently unchanged from what they were last night. Sleep pattern for last night sucked horribly didn’t get to sleep till somewhere around 2:00 in the morning, and I was up at 5:00. I am hoping this clears up by next Wednesday since I had to have the neurocognitive testing series at the school rescheduled. Not much else interesting about me being sick, so I'm going to stop boring you with this blog post.

Results of the throat culture came back negative...

The new front page now sports a much cleaner look. Less text on the front page since most of the information is now available within this blog. The last.fm radio system is very easily accessible on the front page now, and has the instructions to keep it running even if you leave the page right below it!

Enjoy the new front page look!

See the little red box above? That little red box lets you listen to music that I am listening to. Full songs will play out of that little red box, all for free thanks to last.fm make sure to check my profile out there too by clicking view profile. You can see what I am listening to in real time! The little red box will also be put on the front page of my website, want to listen to music while you browse my site or do whatever on your computer? Open my website and click the little button directly right of view profile and it will open in a very small pop-up window, once that is open you may close my website or continue to browse other pages on my website!

Today is now the fourth day of me being sick. My sleep was sub par yet again. As of right now still runny nose, nausea, generalized muscle weakening, dry mouth, sore throat, yellow mucus as of right now the symptoms appear to be unchanged from last night aside from new spinal pain and left hip pain, probably from morphage in my spinal problems.

We went to my general pediatrician today. He took a CBC (complete blood count) revealing some sort of infection, blood count points to possible strep throat and or similar infection; therefore, a throat culture was run and results should be back by Friday.

In other news the doctor today gave us a prescription for the powerchair and undersigned the justification, this will make getting the dealer to give us the powerchair I need guaranteed and makes us eligible for the insurance company to pay for part of it. We still need a lot of money for the powerchair, van upgrades (lift or automatic ramp) house upgrades (ramp to front door, widening doorways) and multitudes of other necessities.

We are now contacting several powerchair dealers to get dealer quotes hence the justification showing prices not final get dealer price. Several powerchair dealers will be doing competitive bidding.

Today is the third day of me being sick. I slept better last night because the seizures occurred when i was awake though i did not sleep very good still. As of right now still runny nose, nausea, generalized muscle weakening. as of right now the symptoms appear to be unchanged from yesterday. although there is one new symptom, very dry mouth which could be signaling dehydration therefore i am drinking a lot. Sore throat and yellow mucus signal respiratory infection.

A urgent care same day appointment has been scheduled for 2:15 PM today.

I was supposed to go to the school for some specialized neurocognitive testing today though that appointment has been canceled and will be rescheduled.

Expect an update after the doctors appointment.

I have signed up at last.fm which is a music sharing site at which users download a small program that monitors what they are listening to then broadcasting that data to the world and a specialized statistics tracking system. It also helps with getting more music that you are likely to like and download. You can view my last.fm profile by clicking the link at the bottom of this blog and see what kind of stuff I listen to.

Alin’s last.fm

As you might have already noticed I put a post on the blog whenever the photo gallery is updated. I decided that I could also put a “Last Updated” script on the page that will automatically show what date and time I last uploaded photos to the gallery. As you can see I am really being proactive on making sure to keep the website up with the latest updates and upgrades. So expect more upgrades in other areas.

Today is the second day of me being sick. I did not sleep good last night, seizure’s usually don’t behave when I am sick. As of right now still runny nose, nausea, generalized muscle weakening, and other symptoms are all worsening.

As of right now no medical intervention is being made aside from symptomatic drug therapy.

Homebound tutoring today has been canceled.

As you all know I have major medical stability issues, a very low weight and other issues. As of today I am sick, running nose, nausea, generalized muscle weakening, and other symptoms.

There are only two things this could be, either they are “flag” symptoms for advancement in the disease as these types of symptoms occurred right before I wound up in Children’s Memorial Hospital for 4 days. Or it is a plain sickness, since my weight is so low at 90 pounds we have to monitor things very closely and if I start loosing weight from it I will likely be put in the hospital again. I will update daily on my condition.

My friends/caretakers Angela and Maria came over today; Maria brought one of her friend’s Victoria with her. They came before my parents left for church at 10:15 AM and left at 2:20 PM when mom and dad got back. We had a great time together downloading music and injecting it into each others iPod’s, we also obviously had some fun with the camera taking 25 pictures over the course of the day.

Every second and fourth Friday of the month Beans & Leaves in long grove holds a small get together for people to come listen to live music and drink coffee, smoothies, apple cider, and multitudes of other non-alcoholic beverages. I went on Friday night. The 12th and some of my friends met us there.

The photos are now in the gallery, and they all have titles.

You will notice a lot of liquidity in the photo gallery as I am doing some experiments with things.

I will be trying to upload a much larger portion of my photo library to the gallery as I see fit.

I will also be trying to put titles to all of the photos in the gallery, which I see as a very hard task for me although ill get it done as time allows.

As of right now those are the only two things that will be happening to the photo gallery, there should be no interruption in its services.

This is an ongoing project; therefore, I will continue to update you guys as the project progresses...

As I was randomly clicking through my site checking things, I came across a textual integrity error listed below. It now corrected.

Incorrect
5.My overall arm motor function improves when I am in a tilted and or reclined state.

Reason for correction: Recline system was not sought as medically necessitated at this time, although may be needed as the disease progresses and will be added as an upgrade when necessary.

Since the recline system was removed from the justification report a while ago that does not need to be updated at this time as the quote on there is still correct.

Corrected
5.My overall arm motor function improves when I am in a tilted state.

I regret to inform you all that the justin.tv/alin0 webcast has been shut down indefinitely, it is unlikely that it will be revived from the dead at any time due to the justin.tv website going public making it impossible for people to see smaller channels like mine thus creating a total lack of viewers on my channel. It was a good short-term money maker and has brought us closer to the powerchair I need; we still have a very long way to go until we complete all the funds.

The justification has had many changes made.

Changes are as follows.

Medical diagnosis’s have been expanded and some diagnosis’s that may have remote relation to the powerchair have been added.

The posture section had some things swapped out to other paragraphs as relation deemed necessary.

Sensory-Motor Patterns and Processing had swap-ins from Posture section.

Current Seating section received expansion of negative impacts in the sensory integration/processing disability.

Contour U custom seating justification received expansions in the sensory integration/processing section.

Swing-away footrests and heel loops/ankle straps section has been added, expect this section to receive multiple updates.

I have made a few updates to the justification report.

Changes are as follows

Stealth Comfort Plus 10” headrest must be ordered through the Pindot order form due to the Contour U custom molded seating system requiring a special mount bracket for the headrest.

Justification reasons have been added and or expanded on the following.

“Airline” seatbelt received expansion.

Transport brackets received expansion.

Quad link retracting joystick mount received expansion.

The new report is already available by clicking “The Powerchair” above.