How funny is this, the fact that we would wind up going back to Children's Memorial Hospital again. The reason, we have to get a VCUG and CMG at the Urodynamics laboratory to find out why I have the urinary problems I do with the burning. I no longer have the huge burning issue YAY. But according to the urologist I don't void completely. The VCUG is a Voiding Cysto-Urethrogram in which they insert a catheter and inject radioactive dye mixed with water and watch as I urinate on the X-Ray. During the VCUG they will at the same time have electrodes hooked up to me like for an EKG but with more electrodes in odd spots to monitor the muscles, this is called CMG Cystomyogram which is similar to an Electromyography (EMG) for other muscles. The CMG will tell us if it is spastic muscles that are causing me to be unable to void completely. This happens next Friday.

This is NOT a declaration that I need surgery, well, its not a declaration, yet. But it is very possible I might need serious spinal surgery. My last X-Ray series did come out ok and it was enough images to tell that my spine has gotten worse. We are going to see the orthopedic surgeon David. L. Spencer at Advocate Lutheran General Hospital next Thursday. I will keep you all posted on updates.

We finally decided to install carpet in the lockdown area to make it less ugly and shabby looking. The carpet looks great in photos. I will have to look at it in person next time I go in the van. Anyways, dad got the carpet at the hardware store. One side of it is sticky with adhesive. It is actually carpet tiling.

Ok, my room has been re-furnished for a while now. I think two weeks now. But anyways, they are here, we FINALLY got around to taking the photos. Sorry for keeping all of you waiting. I know some of you were clamoring into my E-Mail address about it with messages like "WHERE ARE THE STINKING PHOTOS OF THE RE-FURNISHMENT!!! GAWD GET THE CAMERA AND TAKE THE PHOTOS ALREADY!" So here they are. The bed is an Invacare Semi-Electric homecare bed. The table is a LUMEX economy roll over table, the dresser is an IKEA HEMNES white.

LUMEX economy over bed table & Invacare Semi-Electric home-care bed.


IKEA HEMNES dresser.

Click any of the photos to go to the gallery.

Dad has added a little upgrade to our front porch. A little cool elegant black gate! If you ask me it makes the house look kind of english. Really designed to keep the dog in the porch if she gets out the door. Which she does all the time. But I think it also makes the house look more appealing and upscale. I mean not everyone has a gate in front of their door. Especially in a ramp, deck, gate, door configuration.

Click the picture for more.

Yesterday me and dad had to get some stuff done out on the deck. So I took the camera out with me. Got some cool photos. Who would have known the tilt system would give a good photographic advantage. Optimism in a disease like this is important. So trust me, while I do have a degenerative disease, you can still get a nice set of advantages in a powerchair. Anyways, click above to go to the new photos. They are not much but hey, they are new! and I have not taken pictures for quite some time.

Click the picture for more

It took me a very long time to decide if I am going to pull the plug completely or freeze the podcast for a while. I decided that I am going to freeze it for now because we are going into more medical problems and my time to do things like podcast is very short to nil. However I am finding time to do some Youtube videos. All are now accessible at my Youtube page on the sidebar!

It's about time that I updated my About Me page. Dad helped me do the writing for it. Hope all of you check it out and give me your opinion on how it is. This is the page that the news media will take when they discover my website while I am in New York.

Today we went to Carol Booth at the Advocate Parkside center which is attached to Lutheran General Hospital. She saw me in the hospital when I was getting my G-Tube and we did our follow up today. She will be running some further genetic testing to see if we can possibly find out what disease I have. Before she can run any tests she will contact my neurologist and see what tests were already done. She may run a test involving a company called Athena Diagnostics in Germany in which an Athena office near us will send someone to collect a blood sample at our house and then ship it to the lab in Germany for testing. She also explained to us again like the geneticist from last year, it is very possible that we might never get a name for the disease I have.

This has never happened to us before, but we have a bit of an X-Ray trouble going on. We are questioning if the right X-Rays were preformed on me today as there were only two images taken, a rear view projection and A/P Lateral view of my spine. Usually they take 12 images of my spine and neck. So we are currently questioning if my doctor ordered enough images or possibly ordered not enough. So we are going to contact my doctor tomorrow. I think its pretty likely that we may have to go back and get more images taken. Luckily it is not the dead of winter like last time.

Immediately following my G-Tube surgery one of my child life specialists at the hospital came in and discussed Make-A-Wish with us. We explained that we called them last year and were declined. They had explained that the reason we were declined was we were self nominating and didn't have a solid diagnosis. She explained that we now have the entire hospital behind us and also a finalized diagnosis of neurological disease. She decided to nominate us. A few days after we got discharged Make-A-Wish chicago called and talked to us and told us that I was going to be granted a wish since the hospital and all my medical stuff proved that I am eligible for Make-A-Wish. They decided to schedule us for a wish granting team to come out to the house and gather my life story and take down final paper work and information. After this they would begin preparing things to finally grant the wish. We had a great time with them talking laughing and having fun. In the end it all came down to the wish. They require both a primary and a back up wish. As my primary wish I wish to go to the New York Stock Exchange and ring the opening bell and then go down on the trading floor. They said that if I do make it to New York I will be there for at least four days, so we have to plan three more days worth of activities, for the second day I said maybe a helicopter tour. If New York were to not work my back up wish is to go to Luton Airport in the United Kingdom and spend a while with all my friends in the United KIngdom. Both wishes will be tricky to grant, but one will come out on top and work. This marks the beginning of the great alinssite.info boom. Upon the wish being granted it is expected that alinssite.info will boom and have huge visitor numbers. When I am on my Make-A-Wish trip I will make very frequent blog posts every few hours and there will be truckloads of photos for everyone to look at. I really look forward to this.

It's X-Ray time again! We are going to Advocate Lutheran General Hospital's Yacktman Pavilion again for my spinal X-Rays. It is almost six months since my last series but we are deciding to do it a little early due to my spine causing pain again, even while I am in my powerchair. We will also be calling my rehab technology specialist at Quality Healthcare Equipment to schedule me in to get the back of my powerchair re-moulded for me. If my spinal condition has worsened we may need to talk to orthopedic surgeons and neurosurgeons about doing a spinal fusion and instrumentation.

Last Wednesday night we had to disassemble and dispose of my old bed, forcing me to sleep on the couch in the living room. My new hospital bed was delivered Thursday which marked the beginning of remodeling my bedroom. This last Sunday we went to IKEA and brought a new dresser. Hence why no photos of the hospital bed or my room were taken on delivery of the bed. I have decided that we will take all the photos all at once when the remodel is done so you don't get messy photos of a messy room.

Another usual day today on the computer, do some surfing hear my E-Mail ping, check the E-Mails, Go reply to some message boards. At 10:22 AM a not so normal message came in. Apparently the company i use for quickly downloading cumbersome files like Apple SDK's and Hackintosh files and various miscellaneous files quickly without using a considerably illegal P2P network decided to throw $100 dollars into my PayPal account. I am really thankful for this as I don't see many companies flocking to donate and help us make it through with all these medical bills piling up. So do me a favor, if you are looking to access USENET legally and quickly please use http://www.newsdemon.com their low cost high efficiency system will blow any other provider out of the water.

Saturday night we decided to go out to eat at Old Country Buffet, dad decided to feed me a little bit of steak with a lot of BBQ sauce to help lubricate it so I could swallow it. After that we came home and around 10:00 PM I started puking. I puked 7 times and then stopped around 7:00 AM sunday, every time I tried to drink something I puked it right back up. We called my doctor and he told us to go to Advocate Lutheran General Hospital's pediatric emergency room, we were at Advocate Lutheran General Hospital for my G-Tube insertion. So around noon we were all ready to head to the hospital, me with an empty stomach and not drinking anything was miserably nauseated but luckily no longer puking. We arrived at the hospital at 12:30 PM and went to the emergency admitting desk and gave my information. We then waited a few minutes and then were taken into a triage room. They took my blood pressure, blood ox and pulse along with my temperature. He then inserted a pediatric 24 Stubs Gauge needle and then threaded in an IV line. Surprisingly due to the small needle size this was no where near as painful as insertion of the IV when I was in the operating room for my G-Tube insertion, they explained that an OR line is much larger around a 16-17 in pediatric operations just in case very fast large volume of lifesaving blood or medication is needed it can be infused much quicker in a high gauge line. Once the IV line was inserted he connected a small line with a blood collection connector and inserted several blood vials one after another to collect blood for testing. After this I was taken to a private E.R room and waited for about an hour before the E.R doctor came. The doctor examined me and then asked some questions and then ordered that I have X-Rays taken. After another thirty minutes I was taken to X-Ray and they took 10 pictures from various angles, all with intent to visualize gastroenterological systems. After this I was taken back to my room and we waited a while longer. After another hour or two they came in and explained that my white blood cell count was high and that my potassium level was quite low along with the fact that from the blood tests i was obviously dehydrated. They brought in my "little friend" the IV pump and hooked my line up to it and began pumping hydration fluids along with potassium and multi-vitamins. After another half hour they talked to my surgeon and doctor again and all three agreed to admit me overnight for monitoring and more hydration. It took another two hours for them to get me a room as the hospital was already very full. We got a room on the same floor with the same nurses from the G-Tube surgery, all of the nurses already knew me and some even came to give hugs. I was set up in a room much larger than the room i had when i had the G-Tube surgery. They then had the surgical team come up and examine me and they then cleared me to drink ice water and suck on ice chips. This morning they woke me up around 7:00 AM for some more blood tests, since the IV line was already pumped into they could not use that, only a brand new IV line can be used to draw blood. Thankfully the lab tech was very good and got the blood out pretty easily without much pain, again using a 24 Stubs Gauge needle. After this we simply waited around until I finished most of my third bag of fluids and they introduced some flavored juices. They concluded that I am no longer allowed to eat any solid food unless it is very soft like veggies in chicken soup. We discharged around 3:00 PM, all E-Mail delays are already cleared as of this news posting.

All communication systems are back up. There is no longer any type of delay processing E-Mails. The failure was easily fixed by resetting all of the network equipment. The reason it took a whole day is I had to wait for dad to do it since i cant get to the network equipment on my own

The website is unaffected by this news however this news directly affects any communication from web visitors today and for the next few days. Take note that the midwest is getting hit by an array of bad storms. Our internet provider is not very good at keeping my connection up even though it is a mission critical augmentative communication necessity. At this time I am using my Verizon AirCard to get onto the internet via the cellular network. Please note that any visitors who have sent emails will continue to get a response, responses are DELAYED at this time... Further updates will be given.

This report tracks from April 1st up to the last minute before May 1st. The report is a 1.0 MB JPEG image and may take a while to load on slower connections.

This report tracks from April 1st up to the last minute before May 1st. The report is a 1.0MB JPEG image and may take a while to load on slower connections.