Today we went to Dr. Shaun O’Leary for neurosurgery consultation. Todays appointment reason was the fact that my rehab doctor Amy Sun want’s me to get a Baclofen pump put in. I agree’d that it would be easier for us to deal with a pump than dealing with putting it through my G-Tube daily and it not working very well. The surgery should happen within the next month. Within the next week we will be having me admitted to the hospital for a test dose done spinal tap style. Due to my severe spinal deformity the spinal tap will be done under a Fluoroscopic X-Ray machine to make sure that it does not impact any of my vertibra and or my spinal cord. How the process will work is I will go in one evening of next week and they will take a pre-Baclofen Ainsworth scale, which is a special scale that helps determine spasticity amount. Then I will sleep over and in the morning they will either take me to the fluoroscopy room in radiology or take me down to the Operating Room and bring in a portable fluoroscopy camera. Then they will do the Ainsworth scale again and if there is any improvement in the numbers they will schedule me for the pump insertion!

As I always do I will keep you all updated on this stuff!

Alright everyone. I have some good news today. Yesterday we went to my new(ish) pulmonary specialist who saw me while I was in the hospital for four days last month for observation for a painkiller patch. At the hospital he mentioned he would be likely to order The Vest system for me, yesterday really proved to him that I really need it. As of right now he gunk has returned and is even worse due to the humidity and other factors affecting my disease. Therefore he wrote up the order instantly yesterday and we should be getting The Vest system within the next week. That is great news for us, no more gunk! Yay! We also have to schedule some pulmonary function tests, which I predict the results could be kind of scary. And we need to see him in four months, so we will be going back to him sometime in very early december. Will keep you all posted!

Hosted by: Alin S
Title: EPISODE32 - Disabilities - Arnold Chari Malformation
Time: 08/01/2008 09:00 PM EDT
Episode Notes: Tonight we will discuss the Arnold Chari Malformation. We will discuss its problems and its treatments and also make some humor....

It is about time I got myself a next generation contact and feedback system. Our current system is a bit old school and is not up to the times with the newer Web 2.0 architecture running many sites on the internet. So I went out to Kampyle and got their system. It was easy to install. So when you click on Contact Me you will be taken to the new 2G (Second Generation) Contact form. This new seciond generation contact system will give you a more versatile contact platform. Response tracking will allow me to know if I have responded to all communications or let one fly under the radar. The ability to have bug and problem tracking will allow me to notify the user who reported it directly. Just like the old form your E-Mail is required! This system will not change the overall website in any way unless I decide to activate the polling feature, I will notify everyone on the blog before i activate the polling feature.

Polling feature will result in a certain percentage of all visitors getting a active notification before they close the window asking if they would mind giving some feedback. I will disclose that percentage on the notice of enablement blog post!

Polling is NOT active at this time!

Today from 4:30 PM to 8:00 PM or so I was at dads 50th birthday party. It was really fun and we had a great time. Me and one of my carers made dad a special birthday card which he absolutely loved! I took a few pictures but most of the pictures this time were taken by various people. It is funny how many times my expensive D-SLR camera was passed around today. It had been in 5 of our family member’s and relatives hands before it made its way back into mine. The party took place at Beans & Leaves where mom sings weekly. It was mostly a drink and cake party. We also had some small veggie platters. I did not eat anything but I guzzled some drinks. I did not take much in pictures since I asked Tom the guitarist if I could do sound board today and he said yes. I ran the sound perfectly. I used to run sound at our old church before they imposed a restriction that you must be 18 or older to do it. So I am the new sound man for our performances. Yay! I was really in my happy zone doing sound. I have always had a passion for sound equipment. So many knobs and switches to mess with. It was very nice the weather today. It was warm and sunny, which was good with me. Some people did not like the heat. But I did it was quite comforting for me.

Very enjoyable episode last night. It is functional and working

Hosted by: Alin S
Title: EPISODE11 - Disabilities - Powerchairs
Time: 07/25/2008 09:00 PM EDT
Episode Notes: Tonight we will be discussing powerchairs and the healthcare system somewhat. This is an R rated episode for lots of profanity, no sexual content though! ENJOY!

I don’t think we did a episode JUST about powerchairs yet. Whether we did or not I am doing one, DEDICATED to powerchairs! And their awesome, awesome... uhh, power!

Hosted by: Alin S
Title: EPISODE11 - Disabilities - Powerchairs
Time: 07/25/2008 09:00 PM EDT
Episode Notes: Tonight we will be discussing powerchairs and we have a special guest with us who will hopefully continue to attend with us weekly. Last 20 minutes may be used for other news

These are photos I and my dad took after we shaved my head for my upcoming sleep study and 48 hour EEG. The reason we are doing this is because even though I like how that sticky stuff feels, thank you autism! I don’t like it in my hair. There is not much to say except this is a picture post! They are taken yesterday!

Its up!

Hosted by: Alin S
Title: EPISODE10 - Disabilities - Airway Clearance Systems
Time: 07/18/2008 09:00 PM EDT
Episode Notes: In this episode we will disucss the various Airway Clearance Systems, paying special attention to The Vest from HIll-Rom corporation. We will also discuss other news should we find it necessary.

Main reason this one pays attention to The Vest system is because I am ultimately likely to get one.

Hosted by: Alin S
Title: EPISODE10 - Disabilities - Airway Clearance Systems
Time: 07/18/2008 09:00 PM EDT
Episode Notes: In this episode we will disucss the various Airway Clearance Systems, paying special attention to The Vest from HIll-Rom corporation. We will also discuss other news should we find it necessary.

Before i made this one public I wanted to make sure it all works. It works, so it is now public!

Hosted by: Alin S
Title: EPISODE9 - Disabilities - G-Tubes
Time: 07/11/2008 09:00 PM EDT
Episode Notes: Tonight we will talk about G-Tubes and the different types of G-Tubes, their uses and care requirements and various proceidures. last 10 to 20 minutes will be other news. We went over with some iPhone and ICANN And various other news!

The new mattress is now on my bed. And I am much more comfortable with this mattress than the old hunk of junk Apria gave to us with the bed. Odd thing is, when dad checked what mattress the hospital had on the hospital bed. Apparently we have the exact same mattress! Which is awesome! Hopefully I will get better sleep thanks to a better mattress.

The demo was done as of about 7:00 but I became so busy filling out paperwork to get the thing that I forgot to blog!

Shown above is a picture of The Vest system from Hill-Rom. The woman who came out will become our account manager and will manage the entire process of ordering and getting The Vest system. Our doctor told us that he is almost definitely going to be ordering one for us, but I decided to call and get an account manager assigned to my case and also get a demo done. After the demo I was absolutely amazed at what kind of stuff this thing brought up to the point a “huff cough” could bring it totally out. Thick sticky lung gunk, and lots of it!

Shown above is the Model 104, the only difference is the control box is the same just a different software and model number being hte Model 105. The vest shown above is the exact same vest i will be getting. Usually they send out a chest only vest (shown on the left) though it is up to the patient and caregiver and doctor to decide wbetween the use. Both offer the same effective therapy, the difference between the two is the chest vest is shorter and only inflates on the front of the chest, not on the sides and back. Being autistic with sensory integration disorder added a second dimension of complexity with this. Is it going to work, will it be quiet enough, will it feel ok. We decided that a full vest is definitely the route to go for ease of use and adjustment along with comfort, due to the inflation going fully 360 degrees around.

Our account manager Stephanie. L made things really easy today. She will also help us with getting insurance to fund it. But in the sad event it does not get funded by insurance, please donate to help possibly cover the cost of this and any other current medical expenses

Stay tuned for more updates on The Vest system!

Yippie! Our orders got canceled again due to problems with the company. Aren’t we having fun. NOT!!! As some of you may know Apria healthcare has been bought out by The Blackstone Group. As part of the acquisition plan Apria Rehab will no longer exist, offices getting sold to other companies or closed and transferred to other companies. Apparently, our office was one of them to get closed all together and have all accounts transferred. The account was transferred to RehabTECH in Naperville, IL. It is closer, but now we have to wait even longer for parts that I have been in need of for more than a few weeks!

New headrest, Powered-ELR’s, New seat cushion, New electronics system. New moulded back.

Tonight at 5:00 PM we have a special visit from the Chicago area Hill-Rom Respiratory Therapy Division representative to do a demo of The Vest system for me. My pulmonary specialist is extremely likely to order one for me, but I decided to have them come out to do a demo so I can figure out which vest style will work best with my physiological problems and we also have some added complexity with my Autism and sensory disorder. We also have to make sure to choose a vest style that is easy for me to use without major help from mom, aside from her just getting the equipment to bedside, but we also have to make sure to pick the style that I will be most comfortable using. The representative will also be giving us some paperwork that will make obtaining and funding the system much easier through insurance. Stay tuned for updates tonight!

Yay! I got the new mattress. Dad will be swapping out the old mattress and putting on the new one tonight. I will try to get pictures, but don’t worry about it as it’s not all that interesting to look at. It is rather plain looking. Shown above is a picture of what it looks like. Just on the real one you don’t have that huge part cut away. hehe!

The My first drive to the library, in my powerchair! did not have the gallery link embedded into the picture. It is now properly embedded and should be working!

Today me and one of my caretakers, Svetla, went for a drive. Not in a car, not in a van, but with her walking, and me driving my wheelchair. We drove a straight mile to the library and a straight mile back. I created a Routing Sheet, in Google Maps which we stuck to religiously except due to some non functional crosswalk signals we had to “mirror” everything for a ways to avoid the broken crosswalk signals. I plan to go on drives more often. Especially when i get the parts I need for my wheelchair. Could definitely go for a real drive then!

I also made a bunch of youtube video updates tonight too!

Well, this is it everyone. The five week series of bowling has ended. I will continue to see my friends outside of it and we might continue bowling on our own. I hope to go bowling more often as it is fun.

Me and Jenny re-connected a few days ago. We have not contacted each other for a long time due to my medical condtion. But we are back up and running again. I have known Jenny for a very long time and am very happy that we are back to our old routine of being great friends. She lives all the way in New Zealand sadly otherwise I would go visit her in a heartbeat. Though it is one of my goals to visit her one of these days. She is probably one of the sweetest people I know and is among the greatest people in my life. I will be doing some hosting for her. She is a web design and I.T major and has recently made the big switch from Winblows to Macintosh computers. I think a while ago I might have influenced it. All that stuff aside I welcome Jenny back into my life. I will be doing more blog posts on her as I see necessary. She is registered on DisabledPlanet as KiwiJenn, which makes me really happy. She is also an honorary administrator there.

Some link updates have been done. A duplicate newsdemon.com link has been deleted. The johnthevanman.com link has been deleted as my van dealer is unlikely to open a web design contract. I have recently hooked back up with Jenny a friend who I have had forever. She is in New Zealand, and I will be doing a blog post on her tonight too. So I linked her 3 websites, her blog, her forum, and her main website.

It’s about time. The Disabilities podcast is being thawed from cryogenic storage in hopes we will be able to get some participation from people. It is officially unfrozen as of next Friday. Ironically the same day iPhone 3G comes out!

Hosted By: Alin
Title: EPISODE29 - Disabilities - G-Tubes
Time: 07/11/2008 09:00 PM EDT
Episode Notes: Tonight we will talk about G-Tubes and the different types of G-Tubes, their uses and care requirements and various proceidures. last 10 to 20 minutes will be other news.

Last night i went for my fourth bowling trip. Which went very well. I am very hopeful that the girl I met there will be mine soon. I had a lot of fun there bowling and also playing with my friend’s tilt switches on their powerchairs, since they used micro-joysticks, which is a little box with a joystick that only goes up or down protruding from one end, it is shown above. I will make a video hopefully next week to show you all what it looks like and what I am doing. I don’t know why, but those swithces are just so much fun to mess with hehe.

The Haloscan system is now running again. Apparently the server decided to just leave for vacation early. The Haloscan employees had to chase it down in their IT truck that they usually use to haul servers from the company they buy them from to their datacenter and then grab it and strap it down to the floor as it kept fighting to get away. The server underwent psychotherapy and is now back in its rack happily serving us our comments. Way to go Haloscan!

The Haloscan blog commenting and rating system is down. It is down at their end so I can’t do anything about it. Please stay tuned for updates on the fix!

The wheelchair parts are going to come from Apria. Their office for custom powerchair is all the way in Burr Ridge which is about an hour and a half away. Thankfully they said they would be willing to do everything out here, however some of the upgrades like the ELR’s they will need to take my powerchair back with them to get that done. They will be soon making an appointment for the guy to come to our house to do the evaluation of the chair and also get the scripts and justifications.

It has become urgent emergency necessity to get the mattress due to stage one pressure ulcers already forming. We are not able to wait for insurance approval to go to an out of network provider, therefore we are taking another slam on our emergency fund to get the mattress. Donations are needed to help absorb the impact of this emergency transaction. The mattress will arrive no later than next Friday.