Alin's Site

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We went to the doctor today at 10:45AM and they took a throat culture also some observational studies with an otoscopy of the ear and nose and mouth and concluded that I have a bacterial upper respiratory infection and prescribed a Zithromax Z-Pak. No news other than that!

He also explained to us that someone with this complex a medical case needs aggressive treatment for illness and said that if I don’t feel better at all by Monday morning to call him immediately to possibly be admitted to the hospital.

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I’m terribly sorry guys, usually I get daily updates up and running when I get sick but I didn’t this week. I am on my fifth day already, I have been sick since Monday, with upper respiratory infection symptoms. Today we have a doctor appointment at 10:45AM. If there is any interesting news like antibiotics or any of that I will make sure to throw up another post including his diagnosis. We were supposed to go for my spinal X-Ray series today at the Yacktman Pavilion in Niles. The X-Rays have been postponed until sometime next week, they are drop in not appointment based luckily. Expect further updates today.

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The podcast has been rescheduled to next Tuesday at 9:00 EST due to the fact that this week there was a total lack of listeners and callers. hopefully it should be better!

Hosted by: Alin S
Title: EPISODE2 – Disabilities – Amyotrophic Lateral Sclerosis (ALS)
Time: 11/27/2007 09:00 PM EST –> 12/4/2007 09:00 PM EST
Episode Notes: This episode is going to mainly have conversation about Amyotrophic Lateral Sclerosis (ALS) and ways of dealing with its effects to maintain longevity and independence through different devices, therapies, and treatments

Alinssite.info domain in address bar

My website has a new domain name which does not show the ugly web.mac.com anymore and or prohibit the majority of Google users from being able to find the site. This domain name cost us $9.99 to register. Hence the next donation of $10.00 will allow us to efficiently absorb the cost of this much needed website upgrade. This upgrade will allow new visitors originating from www.google.com to be able to find our site easier, and also allow google to index our site more rapidly and efficiently. The domain does not expire for a whole year from this date and time. Website upgrades like these are important to maintaining viewers. With the new domain expect view rate to increase very quickly as Google indexes our site more rapidly.

Dont forget to donate to help absorb the cost of the soon to be ordered ramp, soon to be expanded doorways, soon to be purchased van, and these website upgrades. you can donate by clicking the donate link below or clicking Donate! above

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As you can obviously see this episode was severely delayed in getting started tonight. The episode did in fact, start on time though all of the attendees were having severe technical issues all being unable to even get called in correctly. Therefore, I was forced to postpone the conference until we could get things back up and running. We definitely made this one a nice long and very productive meeting tonight. If you have an interest in autism aspergers or sensory integration disorders then this episode is for you!

Hosted by: Alin S
Title: EPISODE1 – Disabilities – Autism/Aspergers/Sensory Integration Disorders
Time: 11/20/2007 09:49 PM EST
Episode Notes: I finally got the garbled audio issue fixed by using SJphone instead of the talkshoe shoephone. The main topic will be Autism/Aspergers/Sensory Integration Disorder (SID) and therapies that can help these disorders.

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Today we had an appointment with my doctor for a Flumist flu vaccine and to receive some X-Ray orders. They said that I would be quite lethargic and “out of it” from the Flumist and I’m still up. We received the X-Ray orders for a full spinal series including cervical spine and hip X-Rays for further diagnostic criteria of cervical scoliosis and rotoscoliosis. The X-Rays have been upgraded to high end urgency levels and will be carried out within the next few weeks. The X-Rays have been upgraded in urgency due to the doctor seeing obviously worsening kyphosis/scoliosis/rotoscoliosis curves and a newly spotted cervical scoliosis.

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Today we have an appointment with my doctor for a few small things. I am not sick as of right now although to prevent me from getting the flu we will be getting me a Flumist intranasal flu vaccine. Flumist is delivered similarly to something like Nasonex without a needle! Good thing that there are no needles involved because I get pretty bad spasms triggered by pain. The second thing we will be doing today at the doctor’s office is picking up some orders for X-Rays of my spine, hips, and neck to reanalyze the progression of my spinal deformities. These X-Ray orders should be carried out sometime in the next 6 months. I may leave another update on the blog today after the appointment if necessary.

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It’s about time I decided to get some sort of webcast up and running again. I decided that a video cast is unnecessary and full of security holes. I found a facility named Talkshoe that does online web/phone conferences allowing people on their computers, or phones to create an audio podcast. This will be a weekly to multiple times a week event in which I will get on this Talkshoe program and do a webcast or as they call it a talkcast. The nice thing about this is its all pre scheduled and does not allow you to go on and on for more than a two-hour block per podcast episode. That being said the little gadget above will be added to the front page of my website and will continue to reside here on the blog. If you have iTunes you can subscribe to the podcast to stay up to date automatically. The iTunes link is above and also will be on the front page of my website. Future episodes will be posted on the blog with a different widget to allow you to listen to that episode instantly.

Hosted by: Alin S
Title: EPISODE1 – Disabilities – Autism/Aspergers/Sensory Integration Disorders
Time: 11/20/2007 09:49 PM EST
Episode Notes: I finally got the garbled audio issue fixed by using SJphone instead of the talkshoe shoephone. The main topic will be Autism/Aspergers/Sensory Integration Disorder (SID) and therapies that can help these disorders.

Invacare Logo Black

I finally got around to updating the justification. Me and my RTS (rehab technology specialist) decided against the TDX5 due to it not having certain specialized systems required by my needs and having some systems that are not needed, one of the big factors was the fact that the TDX5 has weight capacities that are unnecessary for me. The TDX-SP will be used instead as it has heavy-duty four pole motors and is designed more for someone who will be in their powerchair full time 7 days a week. The TDX-SP is also designed to pack a TDX5 into a smaller package. This substitution was made since the TDX5 was the best choice up until the TDX-SP went public a few weeks ago. No powerchair has been ordered yet as we still have to go in for the castings for the custom Contour U seating system. Also since the TDX-SP is a TDX5 that’s packed into a smaller, more efficient package, it costs less which may possibly make the insurance company pay for the whole thing. We are still at very high risk of having to pay up to 2,000 dollars out of pocket.

The cost of the TDX5 is 8,792.
The cost of the TDX-SP is 6,000, Shaved off nearly 3,000.

There is no change in function between the two powerchairs, although the TDX-SP is more specialized for pediatric clients or clients with very low weights being that it can only handle clients weighing up to 300 pounds unlike the TDX5 which can handle up to 350 pound clients. The highest weight I would ever get up to even with a G-Tube would be somewhere around 120.

We had also on the day of measurement decided that chest harnessing would be a good idea in my case due to my extremely low trunk muscle tone which compromises the ability to hold myself up thus creating strain upon my spine and spinal cord. The RTS had recommended that it is used any time I am out of the house but I will likely use it all the time to keep prime positioning. Chest harnessing is now listed on the justification report. I apologize for the very sparse details on the report but me and my RTS have still not decided on a specific harness and have not created all of the justification data.

All of these decisions were made on measurement day, please excuse me for taking so long to get these updates up here!

Me and Dad Buckingham Fountain Chicago 2006

This is one of our usually yearly things we do, first me and dad go downtown for a day and come back up. And the next day mom comes with us. We usually ride the train downtown. Though this year we didn’t do it at all, besides we have been downtown more than 20 times with all the stuff we have to do at children’s memorial hospital. Hopefully, next year we will be able to go downtown for fun again. I hear metra trains have a lift on em!

There are a lot of photos here. Remember these photos were all taken last year in august, a little while before i began displaying symptoms of the disease!