Alin's Site

Neurosurgeon Dr. Shaun T O'Leary

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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!

Dr Gabriel Aljadeff Pulmonary

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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!

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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….

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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!

Me and dad at his 50th birthday party

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.

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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!

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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

Me and my shaven head for EEG

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!

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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.

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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.