Today as of 4:00 PM Central TIme respiratory emergency status has been declared. We have noticed declining respiratory condition for a few weeks now, but today it has gotten to the point that we seriously need intervention. As you know I lost the ability to cough a long time ago due to the muscle loss. Today mom and I were quite unhappy with the amount of audible wheezing and also cough reflexes without cough production. Cough reflex for me looks like a spasm right before you puke.

We called my respiratory nurse at my pulmonary specialists office who declared that this is a respiratory emergency that needs to be solved within the next few hours. She called into the doctor who responded with a prescription for an Albuterol inhaler, probably the new HFA type, which unlike the old inhalers does not contain CFC’s due to the new regulation requiring all inhaler medications to contain no CFC’s. A prescription for Prendnisone has been given too. The Albuterol is a fast acting treatment to help us stabilize the condition and reduce the wheezing and cough reflexology. The Prednisone is a specialized steroid that will wipe out any inflammation pretty much anywhere in my body, the main place we are lookign to wipe out is my lungs and tracheal lining.

Frequent updates on this emergency will be given.

Wow! No updates since nearly a week ago. This week has obviously been pretty boring and uneventful. Hopefully things will pick up, hehe.

Yesterday we were “on call” all day to see when I would be called into the office to get my Baclofen pump refilled. They never called yesterday but did today. We went into a special procedure suite in the Parkside Center and that is when the interesting stuff started.

Once I was situated on the procedure table they pulled out the programmer and interrogated the pump, in other words they read any information stored in the pump. Today the most important parameter is volume remaining. Once read they prep the site with Betadine.

Next after they prepped the site they used a Huber point needle, like the one shown above. This type of needle reduces coring in a self sealing septum, such as the Baclofen pump’s access port. Coring in a septum is bad. This was actually a surprisingly low pain experience, my theory is both because of the intrinsic design that the needle more slices instead of pierces, and also the fact that the nerves are severed in the skin upon insertion of the pump. The needle used today was a 22 gauge. Which is the average size that is used for pediatrics.

Once they inserted the needle and infusion set they attached a syringe and drew all of the remaining Baclofen and fluids from the pump. Once done they measured it and then prepared the baclofen to be infused. They attached a special filter to the syringe and then began infusing 40ml of Baclofen. Once done they removed the needle, and they removed the Betadine using alcohol. Then they went in and updated the pump with the programmer, my dose was not increased today since the neurosurgeon was not there today.

Overall it was a very fun experience, I even had two really good nurses, both of whom give awesome hugs. *wink*

Shown above is Apple’s newest MacBook Pro generation. Introduced last week at a special “brick” event it is built like a brick.

I was afraid about this laptop. but today showed me otherwise. I will now explain it in detail.

MacBook Pro 2G Review
By Alin S

Aesthetics

The new MacBook Pro boasts a vague resemblance to the MacBook Air. Alike the Air it really slams you in the face with how beautiful and sleek it is. The black screen bezel makes your eyes concentrate on the screen, and makes colors jump out at you. The black keys and two tone construction at first look shockingly ugly but then you see that the machine is meant to scream, contemporary creativity. The MacBook Air did not fare well in the keyboard department with me since it was a mostly aluminum machine with black keys. Bringing in the black screen bezel definitely made it strikingly gorgeous. The glossy only screen availability may have some users irritated, but I am perfectly happy with it.
Speed

The new MacBook pro boasts a lot of power under the hood. The 2.8 GHZ model was blazing fast, rarely do I see 2.8 GHZ in a laptop. The laptop boots very quickly in about 20 seconds. There is no Solid State Drive option however I am sure you can buy a Solid State Drive if you really wanted it.
Size

The MacBook pro has been made slightly thinner, and a bit lighter. Alike my current MacBook Pro I can only lift it with two hands. But it is a bit easier to lift, so there has to be a weight difference. The screen is extremely thin yet very solid feeling.

Input

The keyboard alike the MacBook Air review is my qualm here. I can get used to this new style of keyboard, but I would love to see a old style scissor keyboard again. The really beautiful thing in the input department is when you look at the trackpad. Usually you see that trademark button below it. Nope, not on the new MacBook Pro, you have one giant trackpad nearly 33% larger than the old. And the whole bottom third is your click buttonn. It even feels like a button, the reason is because it IS a button. The button was simply moved under the trackpad.
Output

The glass screen brings the MacBook Pro into the revolution in screens. It produces rich deep colors yet very low glare. The speaker holes which you can barely see output nice crisp sound, don’t expect a lot of bass, but alike any laptop you shouldn’t expect bass. either way the output’s department is very well built.

Ports

I have some small qualms here. All of the ports are on one side of the machine. This makes it hard when you have things like a USB cellular modem thats not all that compact. Plugging in my Verizon data card made the second USB port worthless. I can’t imagine what will happen if i plug in firewire next to the power adapter, will I not be able to plug in. I also hate that they switched to a Mini-Video output that is proprietary to Apple and requires you to buy one of their adapters to convert it to DVI which means you have to lug another thing around in the bag along with the “brick”

Batteries

I am seriously loving this battery. The battery life on this machine even though it is more powerful is amazing. I unplugged the machine while running iTunes, E-Mail and a Safari session, the standard things I do while out of the house. And the battery counter said I have five hours and 45 minutes remaining. I could not believe it so I did some surfing for about 20 minutes and it reported exactly correct, five hours and 25 minutes. That battery is amazing.

Cost

The machine’s cost has been cut. The old MacBook Pro’s were more expensive and less powerful. Apple cut cost somehow while still making a very high quality machine, which I am a big fan of. The top end model is 3000 Dollars where the top end model in the older computers ran near 3500 Dollars.

This concludes the MacBook Pro Review
Final Verdict: BUY BUY BUY!!!

Today me and mom decided to go on a little bit of a jaunt and go play with some gadgets at Abt electronics. This place is huge, its like a city of nothing but electronics and appliances. The place has to be a square mile or more. I had two things I was mainly focusing on. Camcorders, and Apple laptops which I have reviewed the new MacBook Pro on the blog post here Apple’s new MacBook Pro review.

Me and mom had a lot of fun playing with all of the gadgets. I especially had fun talking to the camcorder technician finding out which camcorder would do best for me. We both decided that I am going to save for a Sony HDRSR12 which is a 120GB Hard Drive Disk camcorder that can record 1080p HD. I couldn’t really get my hands on it much as the cable that held it on the counter was not long enough but she was very helpful and held it for me and let me push buttons and get as much a feel for the camera I could in what restricted state it was. She also told me that when I come to buy mine to mention her name and they will give me 30 day unconditional return policy.

I took some photos inside of Abt as the place has a beautiful atrium area with a big lush fountain and plants and many other cool little things. They even power part of the store with two wind turbines and solar panels! Really cool!

Click the picture above for that gallery!

Yesterday I took my camera to the man shown above to get the sensor cleaned. I was only expecting a sensor cleaning when I talked to the woman on the phone. He came over to me picked up my camera, opened it, and said. I clean the walls, floor, mirrors, lens, and whole camera for 60 Dollars. I had a hard time believing it. He said he would have it ready for me tomorrow.

We went back today to pick up my camera. He knew it was us and went and got my camera, it was in a plastic bag like it had just came out of the box. He opened the bag and I smelled, new camera smell. I couldn’t believe it. I looked all over the camera, was this really my camera. I verified it by looking at the serial number on the intake form and the camera. It was indeed my camera. Digicam is an awesome place to get your camera or camcorder fixed. They are located in Arlington Heights Illinois. Click the link below to get directions!

Get Digicam Directions

Wanna know why my face looks pissed off?

I bought this RAM on eBay last Thursday, I was excited that my laptop would have new life breathed into its circuitry. My RAM arrived today and instinctively I immediately opened the box and neatly opened the RAM baggies. I shut down my computer, unplugged it, took out the battery, and proceeded to remove the old RAM. Upon inserting the new RAM I excitedly closed up the cover, put the battery in and hit the power button. I heard the CD drive do it’s eject cycle thingi and waited. Nothing, after several minutes the screen didn’t even light up. I checked that the RAM sticks were properly seated in the slots and tried again, nothing. I removed the new RAM and switched back to the old. It booted right up. I knew the RAM sticks were good, they are brand new. So I tried it with one 2GB stick. It booted right up. I did some googling and found an article stating that first generation MacBook Pro’s only support 2GB of RAM. I was furious, I called up Apple and asked them if that was correct and they said yes it is correct and my machine is a first generation MacBook Pro. The thing that really ticks me off is the fact that the person who sold me the machine in an Apple store told me it supports up to 4GB of RAM. So I am quite irritated that I essentially wasted 60 Dollars. Thankfully its not a total waste as I can hold onto the sticks until I get a new laptop that will accept them. But I am definitely not getting a new style MacBook Pro. If anything my next laptop will be a third generation first generation MacBook Pro that supports 4GB of ram.

Boy, this week sure has been cursed to problems!1

I hate chainsaws. Being the fact I can’t get up on my own I am kind of stuck between a rock and a hard place. Today at 7:00 AM some landscaping company came next door and fired their chainsaws up and are still going at it and it is getting on my nerves to the point I am about to open up the window and start yelling curses into the morning air in hopes they will hear me. Has anyone ever thought of taking this old archaic technology and making it quieter. Hmm, yet another invention for me to take up and patent. The silent chainsaw.

Today we had two big gigs. First at 11:00 AM we went to the Long Grove Fire Department and performed in the middle of the garage. This was an extremely enjoyable event for me. Today was FireFest 2008 which was quite successful in drawing in a lot of visitors. I did sound as I usually do for big gigs and our standard Saturday gig. During the time we were there we had a lot of breaks since there were so many cool things going on, first they had an automobile extrication exercise in which they practiced extracting someone from a wrecked automobile, photos of that are in the gallery. After that they had a real live living room burn up in the middle of a specially designed containment area. As with the extrication the photos are all available.

I also made a new friend who is a fire fighter there, he took my E-Mail and website and also showed me all of the new high tech gadgets he wears on his body. Unlike fire fighting a mere decade ago things have changed a lot. We now have multi gadget’s as I like to call it. It is in one of the photos in the gallery, its a special device that holds an oxygen regulator, a digital LCD for reading out important information, and a specialized alarm system. If a fire fighter stops moving for more than 30 seconds different alarm tones start going off, first with a low and kind of quiet tone, progressing to a low high medium volume, to a high and extremely loud continuous tone. These are meant to help fire fighters find their colleagues in trouble and help evacuate them to safety or get them out of whatever peril they got into.

I seriously hope we go back to the FireFest next year, It was definitely the hallmark of the day for me.

After our FireFest performance ended we had some time to monk around in the fire house and explore things more for myself. I got to see and touch and smell a two week old Ambulance which is not something everyone gets to see. And yes, it still had that new Ambulance smell.

We then headed over to Long Grove’s central park and Mom and Tom got up on the stage. I was originally slated to do sound for both events but due to the second event having a sound board that is not exactly accessible or otherwise easy to use from a wheelchair we decided to have me go back to the control center, Beans & Leaves and chat with the visitors. Little did I know I would end up bringing a gaggle of people to the stage area with me as I decided to return. Ironically I returned right when a serious sound problem was occurring and helped them try to create a plan to fix the problem, which in the end could not be fixed.

There are a whopping 12x photos in the gallery. A few weeks ago I discovered my camera’s sensor is dirty, so please excuse if there are some small spots on the photos. I will be going to get my camera’s sensor cleaned this week!

Tomorrow from 11:00 AM till 1:00 PM my mom will be singing at the Long Grove Firehouse if anyone is interested. I will be working behind the scenes running the sound board. Then we at 2:00 PM will be working in the Oktoberfest tent. For more info go to http://www.longgroveonline.com

As usual I will make sure pictures are taken!

ComEd came out and replaced our power lines today at 9:00 AM. The power was turned off. The damn dog was barking out of control the whole time, thankfully I had my trusty Apple earbuds and laptop so I could crank some tunes while the crap went down in the rest of the house. Around 10:00 AM we finally got our power back and the line’s have been replaced! Anyone want to come smell the fresh new power line smell?

Today we finally got to the Apple store to get my J key on my laptop replaced. I have been typing with a hole there for the last several weeks when my J key just suddenly fell off. It was not urgent, since I could stick my finger in the hole to type a J. which I still think I am typing in the hole and I am hitting it very hard there because of that hehe. I am thankful to have my warranty still haha.

Today I went to my neurosurgeon’s office to get my Baclofen pump reprogrammed. As usual they put us in a room and we wait for a few minutes. This time they decided to use Doctor O’Leary’s programmer. So the nurse brought it in and then left. Boy was I itching to grab it and start messing with it. Thankfully before the impulse to drive my chair over to the table and pick it up the technician arrived. He knows me and I know him and told him I was obviously eyeing it for the kill. He said dude all you need to do is ask, I know you well enough to let you program your own pump. Since I did not read the manual for this programming system he walked me through things as I was doing it. When we were turning the programmer on, thankfully it was off I hit the little red button at the top thinking it was the power. He exclaimed that once we turn it on I shouldn’t touch that button, I didn’t ask what it does but I assume it erases the memory on the device it is connected to, or worse causes it to self destruct. Today we programmed my pump to increase dosage by 30 mcg from 150 mcg to 180 mcg.

It felt awesome holding the control over every muscle on me. For most normal people they take their muscle control for granted. Trust me, muscle control is not something you take for granted. The good thing is people like me have pumps and technology to help us use what control we can use.

As usual with me and dad being wheelchair nerds we had to snap a few more pictures of the Stealth 2QCR, tonight’s most interesting picture is shown above, which is a back and view of the Stealth 2QCR. From this angle you can sort of see where adjustments take place. There are dozens of places for adjustability. As I have said before, this is the holy grail of headrests. Another prominent back end feature that is only seen with the swing away laterals are the two red arrows, when you pull one or both of these outwards the laterals will unlock. Depends on what you do. This will be very useful when I start doing my sound work again next week as I usually park next to the sound board closely, so dad or mom can simply pop one of the laterals depending on my position and that one will be inwards toward the board. That way I can rotate my head a little more so I can see the entire board without having to turn my powerchair since the board usually is in such a position that my leg rests can’t make it under. Hehe, swing away laterals, whoever invented them is one of my saviors. You can see in my picture that I have iPhoto up and running, I wonder why, maybe to upload the pictures for this post. hehe.

AS OF 2:07 AM TUESDAY OCTOBER 15TH THE E-MAIL BACKLOG HAS BEEN CLEARED, PROCESSING TIMES WILL RETURN TO NORMAL

Our Comcast technician arrived today at 4:15 PM to repair our modem. As I had suspected it had taken one too many chunks of dirty power and blew out. So the technician went out to his truck and got us a brand new modem, still in the package. He plugged it in and then problem struck, we couldn’t get it to activate. After nearly two hours of grueling work between me and the technician we finally figured out what to do, we tried waiting for the activation server to respond. After an unacceptably long 10 minute wait the modem was finally activated. We had concluded that the activation server is getting hit hard (overused) by technicians. Apparently today must be a big day for equipment swaps. Once activated we both ran tests to make sure the modem was up to speed. Both of us were pulling down about 20 Megabytes per second. More tech info is below.

I AM STILL BACKLOGGED TO 6:05 PM SUNDAY OCTOBER 12TH

Today ComEd came out at 10:20 AM to inspect the power system around us and they came across our power line which may at fault. It appears that the line has been spliced five times which is a very large amount. They usually only splice them a few times. So they are contacting the ComEd construction department and we are going to get ourselves a brand new power line at no charge, that is definitely a good thing. They cost around $1,000 dollars. So the area around our house is going to have that nice new power line smell.

Last night our power problems continued. We have been having problems with our electricity for the last week now, getting “dirty” power, filled with surges of too much power, and sags of not enough. So far no extremely expensive equipment has been damaged, Our cable modem went down hard (got fried) today. This failure of one of the most crucial pieces of communication equipment in the house has caused major disruptions. There was another sag in the voltage upon coming home from dinner at WildFish at 8:15 PM yesterday. Dad transferred me into bed and I got the bad news from the router’s fault reporting system, the cable modem had gone down hard. Dad tried unplugging it from the power and plugging it back in, constituting a hard reset. The modem never came back online.

Until this morning we were without any type of communication, I got on the old school landline with Verizon Wireless and reactivated my Cellular Communication’s Card which we use as failover when our main line goes down. As of 11:30 AM we have been running on the Verizon failover system. We will leave it active from now on to facilitate instant swap over’s during failures. We cannot have another outage happen like this as the internet is one of our main channels of communication, actual money is on the line when communications are lost.

On Friday October 10th we had already made a high priority appointment with Comcast to have our modem replaced. To take place today October 13th. The technician will arrive between the times of 4:00 PM and 6:00 PM today.

THE STATUS OF THIS CONDITION WILL BE UPDATED THROUGHOUT THE DAY

DUE TO THE CATASTROPHIC FAILURE LAST NIGHT E-MAILS ARE CONSIDERED BACKLOGGED TO 5:15 PM OCTOBER 12TH AS OF X:XX AM OCTOBER 13TH

Usually I don’t use pics from another gallery as the front pic for a blog post, but this time I did.

Me and Mom and Dad had some fun at Beans & Leaves today. my girlfriend Sarah came today and visited. Photos are above, click to enter!

Yesterday you heard I got my new Stealth 2QCR headrest. Today we snapped a load of pictures. Click above and enjoy the eye candy everyone.

As you can see from the obvious grin in this picture I am extraordinarily happy about getting this headrest. I have had a medical order for it laying around since sometime in April, We have been denied service by one company for our insurance carrier, and the second was bought out by the third, and the third had huge delays for zero reason. The big thing is, I got the headrest!

You probably have noticed this is obviously no ordinary headrest, the two most obvious things that set it apart are the two lateral pads on the top of my head, along with the sub occipital support, which you can see near my neck.

This headrest serves in many areas.

I will go part for part.

The occipital support which is directly behind my occipital bone (middle of head) is found on all headrests.

Now lets get on with some parts that you do not find on any other headrest in the world. Only on the Stealth 2QCR.

On the Stealth 2QCR you have two to four lateral pads, usually in a four pad setup two of them are switches. I currently have a two pad setup that can in a matter of an hour or two be changed to a two switch two pad setup. The two lateral pads act to keep the head in a centered position and when adjusted they offer front end support to stop the head from falling forward, a problem I am just starting to have. For me this is mainly caused by movement so far, but it is something that is getting worse.

On the Stealth 2QCR you have a sub occipital pad, sometimes but rarely found on other headrests. Never found in the exact way Stealth has it designed, Stealth’s can be custom bent for each patient and re-bent as needs change. The sub occipital pad is the lowest one you see on my picture, it is near my neck. The sub occipital pads main job is rotational vector restriction, it also offers lateral stability.

According to my doctor she has about 30 patients who have the Stealth 2QCR and 10 of them have cervical spinal malformation from poor positioning, rotational, lateral and front to back stability all are crucial in halting and or improving a positioning based spinal malformation, I am one of the patients with the cervical malformation’s.

We also noticed that changing my head and neck positioning resulted in my legs being able to get into the legrest’s / footrest’s without major problems, usually my left foot wont be able to get into the footrest, so I used to have to have my foot mainly resting on the heel loop, which was uncomfortable.

The above is just a little example of how bad head and neck positioning can throw a whole chair out of whack. ALWAYS stay on top of your positioning, if something is uncomfortable or if something seems wrong get to your rehab doctor as soon as you can, fixing a problem early will stop more problems from happening.

Another good thing is the fact that my head used to go flying all over the place in our car, my head does not go anywhere in this thing.

Disclaimer: I assume no responsibility over what you use this content for. Usage as medical advice is at your own risk!

Due to the fact I got my new wheelchair parts today and am absolutely burnt out. There will be no podcast tonight.

Yesterday my pulmonary nurse emailed me and after long consideration on my end along with the doctor we have decided to cancel the oxygen in favor of the Cough Assist. Hoping that the sleep issue clears up with the cough assist. if that does not happen we will go ahead and do the oxygen.

Smell that, that my friends is the beautiful smell of new headrest and new seat cushion. I am writing this to you live from Paradise City Illinois also known as my powerchair. I can tell you this so far, I will be getting photos out to you guys. I will show you one example photo of what the headrest looks like.

Shown above is an example of the type of headrest I have now. Minus the blue and green switch, Mine has laterals like the one on the right side of this headrest.

I will explain why I have it on tonight’s blog post with lots of photos.

It is back to looking like this as of this morning. We decided not to go to the doctor today and wait till our standard scheduled appointment next week. Hopefully nothing else will screw up before then, haha.

Yesterday we sent a legal directive stating that if RehabTech did not get me my wheelchair parts to me within 30 days that we would take further legal action. Apparently the letter did its trick. They called today stating the parts were ordered with OVERNIGHT delivery to deliver to their facility tomorrow. They will be installed on my chair tomorrow or Friday depending on when the installer can get out. But that is what I call getting on the stick!

I think I will send the legal directive right off the bat each time from now on so people stay on the ball.

Tip for all of you out there, equipment companies never like the sound of legal action, thus they always jump and do what they should when it is possible.

Yay! Another problem (end sarcasm)

Today we decided to check on my spinal site which I do anyways every so often and were greeted by a swollen bump the size of a quarter of a golf ball. We have an appointment with my neurosurgeon for tomorrow morning. Hopefully it’s nothing major and its just a sterile seroma like what happened on my belly. If thats the case then we just have to wait for the stupid thing to go away.

Wow, I was slow on getting this post up here. We had a lot of stuff going on so I had a hard time getting around to this post.

Last Saturday we went to Long Grove for the 2008 Apple Fest. Mom sang and I was doing sound for the gig. This was my first time doing a big gig and I did awesome. In a few weeks I will be doing two gigs in one day, one which will involve me running a bigger badder soundboard. And then we will be coming back to the Gazebo and I will be running my baby Phonic board as I have nicknamed it. I can’t wait. Just so you guys know that will be Saturday October 18th, I will post more details about that as the date nears.

As always, click the picture above to be shot over to the gallery and see all the photos dad took.

A few days ago I took a photo of the spinal incision to check it, It look quite good to me and mom. It does no look like its about to reopen. But we will keep an eye on it. SInce we definitely don’t trust it.

Today we also went right after my pulmonary appointment to Dr. O’Leary to get my Baclofen pump cranked up a little more. I am feeling more and more different each time, although the change in my feeling is very small.

Doctor: Alright I am turning up your pump now. Ok it is done. Hmm, your not slobbering and floppy yet, not enough Baclofen, time to kick it up more.
Me: Wait I want to tell you some... *non understandable speech and slobbering*
Doctor: Hmm that’s one way to make him be quiet when he is talking too much.
Mom: Where can I get one of these programmers.

I can just imagine the above happening a few weeks from now. If it does happen I am sure hilarity will ensue throughout the entire hospital.

Today we went to the Yacktman Pavilion and saw Dr. Aljadeff my Pulmonary specialist. Today we reviewed my results from the sleep study and pulmonary function tests. My pulmonary function tests came back pretty good, everything was good but my expiratory flow and muscle ability is non existent. As you know The Vest system was working really well for us but we had to send it back because the insurance wouldn’t touch it and MedTronic advises against heavy vibration of the Baclofen pumps. So we are going to have to resort to a slightly more invasive method, the Respironic’s Cough Assist.

The Respironic’s Cough Assist can be considered to be in the same class of device as ventilators. It is considerably similar to a ventilator in the way it forces air into the lungs and then takes it back out. However, the Cough Assist is not designed to breathe for you, it is designed to cough for you. It slowly pushes air in inflating the lungs to a specified pressure. Then it sucks all that air out really quickly. So I guess you could say the Cough Assist sucks and blows.

The sleep study is where things get more disappointing. My Oxygen levels were getting as low as 93% which me and the doctor think may be a component of my really horrible sleep quality. So my doctor and I have decided that I should start using Oxygen at night to help my system work better in my sleep. We should be getting the Oxygen gear delivered soon.

As usual I will keep you all up to date.