<</strong>/center>

I have changed the countdown clock to 9:30 AM tomorrow! As that’s the time I am scheduled to be wheeled into the O.R, I will be arriving at the hospital to go to POCU (Pre-Operative care unit) The operation is going to be a serious operation, much more involved than my G-Tube insertion. Please note that I am unlikely to be online tomorrow. Please send E-Mails / Prayers as we need it. Updates will be given by my mother in the event I land in PICU (Pediatric Intensive Care Unit)

Clock removed from blog post’s due to inaccuracy for some reason. The clock on the front page is accurate!

|

Canceled yet again, this time due to technical problems!

THE PODCAST WILL NOT BE RESCHEDULED TO NEXT WEEK. IT WILL BE RESCHEDULED WHEN I GET OUT OF THE HOSPITAL. NO ONE KNOWS WHEN. THEREFORE NO SCHEDULING WILL TAKE PLACE!

Hosted by: Alin S
Title: EPISODE13 - Disabilities - Sensory Integration Disorder / Surgery Announce
Time: 08/22/2008 09:00 PM EDT
Episode Notes: This is a REALLY special episode, or should I say series! We will be starting a three week series on sensory integration disorder, we will mostly focus on methods of coping with it as it has already been described in Episode 1 however I will reiterate the description in short. The beginning is reserved for announcement of my surgery!

Sorry I was so tight on announcing the episode.

Hosted by: Alin S
Title: EPISODE13 - Disabilities - Sensory Integration Disorder / Surgery Announce
Time: 08/22/2008 09:00 PM EDT
Episode Notes: This is a REALLY special episode, or should I say series! We will be starting a three week series on sensory integration disorder, we will mostly focus on methods of coping with it as it has already been described in Episode 1 however I will reiterate the description in short. The beginning is reserved for announcement of my surgery!

The Powerchair page has been removed due to the fact that I just can’t figure out what the heck to put there! It will come back when I figure out what the heck to put on that page. Functionality of the rest of the website is not affected by this.

It’s time for another surgery! Including this surgery I will have had two surgeries in this same year. My total days inpatient in the hospital along with doctor visits is already well over 50 days. This surgery is for a Baclofen Pump which is a specialized pump that will be implanted right above my hip bone, this pump will be connected to my spinal cord and deliver muscle relaxant directly to my spinal cord. The Baclofen pump pre-test went great, that is why we are going ahead with the surgery. The surgery is scheduled to start at 7:00 AM on Tuesday August 26’th. A countdown clock is now on the front page and here! Daily / Live updates will begin on Monday night August 25th!

Clock removed from blog post’s due to inaccuracy for some reason. The clock on the front page is accurate!

You are looking at a picture dad took from the position in which he or my mom boards the van to pilot it. The little box on the side of the seat with an electrical cord coming out of it is a converter, it is hooked directly to the battery of my van which gives 400 watts of usable power. I will use this for charging my laptop on drives, and whatever else I want to plug in. Check out the attached photo gallery.

I was nervous last night and did not sleep well partially because of that and my discomfort. This morning around 11:00 AM the physical therapist came in and did a spasticity evaluation. After that at 1:30 PM they took me to interventional radiology where they would do the spinal tap and baclofen injection into my intrathecal cavity. I was quite nervous down there but I think my neurosurgeon saw my blog post about my new Neoprene shirt and let me hug him a lot with his heavy warm PVC lead apron on him. After the spinal fluid withdrawl and baclofen I was still a bit nervous and he gave me more hugs and I had totally forgotten that I had just had a spinal tap and injection. Talk about a great neurosurgeon! We are released as of right now and are packing up to head home.

Queue for christmas or next year’s birthday... PVC lead apron, or a few of them, hehe.

Hosted by: Alin S
Title: EPISODE13 - Disabilities - Sensory Integration Disorder
Time: 08/15/2008 09:00 PM EDT
Episode Notes: This is a REALLY special episode, or should I say series! We will be starting a three week series on sensory integration disorder, we will mostly focus on methods of coping with it as it has already been described in Episode 1 however I will reiterate the description in short. Last 5 minutes may be used for news about me.

I am headed back into the hospital again! Things on the website will be updated daily with status. I am going in for my Baclofen pump pre-test. If this goes well I will get the pump put in me in a few weeks. Mind you all I will think it over very stringently since I know its going to be a hard thing in my hip that could impact seating and positioning. We will see how well the Baclofen works for me intrathecally and see if its worth the pain of getting the pump put in. I will probably be in for 3 days.

Yesterday we went to the hospital for my Pulmonary Function Tests. I completed all of my tests with a woman named Kristine who ran the machine. The machine I was on looked a lot like the machine above, the difference was our’s was more boxier and the arm with the patient circuit was on the left of the machine instead of the right of the machine. we do not have a function percentage however after they gave me bronchodialators through a nebulizer there were significant increases in lung function (over 15%). I can probably say my doctor will put me on a bronchodialator. I will have more news when the results come back.

Yesterday night me and mom and dad went to SUMO again and met my cousin Nancy for dinner. We had a lot of fun, The food which most of it I could not eat aside from some soup and pure pineapple without any sauces or any dairy involved was awesome. Everyone else loved their food. When everyone was finished it was time for me to open my present. Ironically me and Nancy were talking about the fact that I love how Neoprene feels in our E-Mail conversations. It’s warm, it’s tight, and it smells good, and makes me feel very relaxed, thanks to my Autism! Surprisingly, guess what was in the box! A NRS Mystery Titanum. It’s far too warm to wear such material outside this time of the year, however when it cools down I will wear my Neoprene daily for warmth. I really don’t like thick coats. Nancy really knows how to pick gifts, it is like it was custom made for me, fit me in every way possble and even left enough room for my G-Tube and feeding line!

One of my friends known as LostInEmulation is a Linux user and Linux affecianado and has discovered a bug within my website affecting Linux computers using Konqueror and the “Minimum font size” setting. She has assisted me in debugging the website, if you are a Linux user and are encountering any problems please use the Contact Me system to file a bug report.

Today, August 8th is my birthday! Today I got my big present from my mom and dad in the mail, we were worried it was not going to come today. It’s an Invacare MK6i programmer which will let me fix my powerchair’s programming and make it work the way I want it to. Not the way the dealer want’s it to. I also got a good deal of cash from relatives. My cousin Nancy is going to be coming for dinner with us on sunday and will have a special present for me. Geez, my birthday is like a Polish wedding, it goes on for a while. We took lots of photos today, click above to see them!

ALso say hello to our new front page picture!

Excuse any imperfections, we had problems with the podcast system!

Hosted by: Alin S
Title: EPISODE12 - Disabilities - Arnold Chari Malformation
Time: 08/08/2008 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.... And special talk about the Olympics and my Birthday!

The stock market is not going to work out. If it even is possible it is taking them way too long and they don’t want to gamble with the risk of my illness going critical. Therefore we have shifted into England and we will hopefully be going to the UK to visit my friends soon. Will keep updates coming

Yay! The technician came out today and did the training on how to get the vest system up and running on our own. Today I only did one 15 minute session but starting tomorrow I will have two 30 minute sessions per day totalling to be 1 hour per day. I will hopefully get some pictures taken by my dad for all of you to see the system and me. It truly is a lifesaving machine for how much gunk it gets out of me.

Last night we did my yearly sleep study. This one was ordered by Dr. Aljadeff in pulmonology due to sleep apnea issues. I slept for about two hours, so it was more of a “rest study” for me. Normal EEG was being run along with other sensing instruments, some of which are described below. The main reason I didn’t sleep well was two little sensors in my nostrils that were really bothersome. Those sensors are shown below.

.

On the left you see the Pro-Tech ETCO2 cannula / snore sensor. This cannula has to be connected to a special sensing box made by the Pro-Tech company, and does not offer any airflow to the patient. On the right you see is called a thermal airflow sensor, it relies on sensing the temperature of the air from my body, this sensor can tell them when I am breathing through my nose only, my mouth, or both simultaneously. The mouth piece was not as irritating as the two prongs up my nose. These two sensors really made breathing difficult for me but I made it through.

The Pro-Tech Piezoelectric Respiratory Effort sensor is embedded into the fabric of a belt made of a very stretchy material. There are usually two sensors, one on the chest and one closer to the belly. Both were quite snug for proper sensing and the material got warm after a little bit. If it were not for those horrible nose sensors, I would have fallen asleep pretty quickly with how good these sensors felt. Ironically the technician said the nose sensors, and the chest sensors are among the most uncomfortable sensors. She was definitely correct about the nose sensors, but I wanted to take the chest sensors home with me.

Around midnight this morning I received an instant message from Jenny our across the street neighbor who I had fixed their Macintosh MacBook laptop. They said “FedEx misdelivered a box to our house late this afternoon...it's named The Vest. It's too heavy for me to carry...I'll try and have Jenny help me over to your house with it tomorrow or maybe your Dad can grab it?” So I told dad and he told me to say yes and was out the door in minutes. He came back with a large and heavy looking box. We have to wait till monday before we can open it since they have to set it up for us. I know how everything works it’s just that they need to set it up with my doctor’s prescribed settings which I do not know aside from the duration of therapy per day and repetition’s per day. Either way I am really glad we got it here.

Yay! My vest system has arrived, sort of. We got home around 5:30 PM today and were excited about seeing a big box on our porch. Only one major problem occurred, there was no big box! I decided to call up FedEx and get a package summary, they said it was delivered at 2:15 PM today. Apparently it “delivered” while we were right at home here getting ready to go to the doctor to get my G-Tube site problem taken care of. We told them that we think it got stolen and they initiated an investigation, and called it a medical emergency investigation since this device is becoming more and more vitally needed. I have horrible time breathing and can barely speak at this point. I really need this device immediately to get the gunk out of my lungs that is inhibiting correct function! Ironically but kind of scary the package was delivered to the wrong address next door. The big problem with this is we don’t know the people and they have been very mean to us. My mom went outside and asked our neighbor who we are friendly with across the street and he didn’t see FedEx deliver anything or he would have stopped them. We told FedEx that they need to go there tomorrow and retrieve the package and re-place it at our house. They agree’d and will be redelivering the package to our house tomorrow. I am quite thankful that it is at least nearby, hopefully they did not open it or damage it.

I will keep you updated on this situation.

I have had an “ulcer” on my G-Tube site for the last month or so that would keep filling up and discharging odorless yellow colored liquid, just yesterday it began discharging blood. We called my surgeons office and told them and they scheduled us for next Thursday. This morning I woke up in a lot of pain and looked down at my G-Tube site to see this “ulcer” has swelled up to a bigger size and looked plain bad, me and mom agree’d that it was too urgent to wait till next Thursday. We called the office and explained the updated situation, the office told us to come in immediately today, they said they would call us back when the surgeon is out of surgery. We went to the office after it was supposed to close today and Dr. Loeffs associate who changed my G-Tube in the office last time came into the waiting room directly from surgery still in scrubs and walked us into an exam room. I pulled up my shirt and she said that is definitely Granulation Tissue which is another word for an ulcer that forms when the skin is irritated from something. She gave me a Silver Nitrate treatment in which she used a swab containing Silver Nitrate to touch the ulcer and cauterize it. Cauterization of the ulcer will hopefully make it heal over in a few days. In the unlucky event it continues to ulcerate after a few days she gave us two more Silver Nitrate wands and told us how to use them. If we use it 2 more times without success we might have to go see her again. Lucky thing is next week I will be in the hospital anyway’s and she told us to have someone see us in the room to check on it whether it healed or not to make sure the treatment is working.

Either way I will give updates on this ulcer issue as necessary

THE PODCAST HAS BEEN RESCHEDULED DUE TO THE EMERGENCIES MENTIONED ABOVE

Hosted by: Alin S
Title: EPISODE32 - Disabilities - Arnold Chari Malformation
Time: 08/08/2008 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....

This report tracks from July 1st up to the last minute before August 1st. The report is a .9 MB JPEG image and may take a while to load on slower connections. I Figured out why it was such a big file and I shrunk it down.

This report tracks from July 1st up to the last minute before August 1st. The report is a .9 MB JPEG image and may take a while to load on slower connections. I Figured out why it was such a big file and I shrunk it down.