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Apparently my Gastroenterologist for some reason wants us to wait another month or two before we even think about an endoscopy for a problem that has BEEN THERE for almost a month. He canceled the endoscopy we had scheduled because he has “Pulmonary concerns” about my breathing and the anesthetic.

(rant begin) I have only been under anesthesia, what, 7 times in the last freaking year!?!??! (end rant) It’s not like adding an 8th is suddenly going to kill me. In other news me and mom upon approval from my pulmonary specialist plan to do my tracheostomy in August, and what makes this even more ironic is we told him that we are planning to do a tracheostomy around August and he said he would gladly do the endoscopy after the tracheostomy.

So the orders list changes yet again, (sarcasm)

• Endoscopy (2 year follow up & suspected internal pressure ulcer from G-Tube + H. Pylori follow up PRIORITY!!!) (IP) <DEAD>
• CT head & spine w/o contrast and with contrast (repeat due to 1 year passing since last CT series) (IP/OP) <WAIT SCHEDULING>
• CT knees w/o contrast and with contrast (new problem by rehab physician, may combine with other CT) <WAIT SCHEDULING>
• Occupational Therapy eval (monitor disease progression) <WAIT SCHEDULING>
• Pulse Oximeter (ordered by pulmonary) <INACTIVE> [WAIT FOR BETTER INSURANCE]
• ETCO2 monitor (ordered by pulmonary) <INACTIVE> [WAIT FOR BETTER INSURANCE]
• Muscle Biopsy – See if there is a muscular dystrophy or other disease directly affecting the muscle such as progressive rhabdmyolysis. (Live – To be scheduled) (OP / IP at doctors discretion) <WAIT SCHEDULING>
  
• Toxicology panels (drug & standard) – See if disease caused by toxic mutagenic agent (Live – To be scheduled) (OP) <INACTIVE>[WAIT FOR BETTER INSURANCE]
• ABGs draw (IP) <WAIT SCHEDULING>
• Urodynamics study (under anesthesia or neuromuscular blockade) (repeat due to question of suprapubic catheter) (IP) <WAIT SCHEDULING>
• Echocardiogram (repeat due to 1 year passing since last ECHO) (IP) <WAIT SCHEDULING>

are also waiting on a few other things to be ordered after the completion of these, the next order batch is. All of the below are considered dead until converted to live orders.

• New wheelchair (CONFIRMED: WILL BE ORDERED, PAPERWORK TO BE SIGNED MORE) (OP, Duh!) <ACTIVE>
• Deep Brain Stimulator insertion surgery talk (new surgery in talks) (IP, Duh!) <INACTIVE>
• Tracheostomy & Ventilator, earlier the better. (IP) <PENDING CONFIRMATION>

sensormedics vmax 229 full view pulmonary test machine

• Pulmonary Functions Test (resp problems, PFT is a default test every 3 months, 4 months passed.) (OP) <DEAD COMPLETE>
• Endoscopy (2 year follow up & suspected internal pressure ulcer from G-Tube + H. Pylori follow up PRIORITY!!!) (IP) <JULY 22ND 8:15 AM>
• CT head & spine w/o contrast and with contrast (repeat due to 1 year passing since last CT series) (IP/OP) <WAIT SCHEDULING>
• CT knees w/o contrast and with contrast (new problem by rehab physician, may combine with other CT) <WAIT SCHEDULING>
• Occupational Therapy eval (monitor disease progression) <WAIT SCHEDULING>
• Pulse Oximeter (ordered by pulmonary) <INACTIVE> [WAIT FOR BETTER INSURANCE]
• ETCO2 monitor (ordered by pulmonary) <INACTIVE> [WAIT FOR BETTER INSURANCE]
• Muscle Biopsy – See if there is a muscular dystrophy or other disease directly affecting the muscle such as progressive rhabdmyolysis. (Live – To be scheduled) (OP / IP at doctors discretion) <WAIT SCHEDULING>
  
• Toxicology panels (drug & standard) – See if disease caused by toxic mutagenic agent (Live – To be scheduled) (OP) <INACTIVE>[WAIT FOR BETTER INSURANCE]
• ABGs draw (IP) <WAIT SCHEDULING>
• Urodynamics study (under anesthesia or neuromuscular blockade) (repeat due to question of suprapubic catheter) (IP) <WAIT SCHEDULING>
• Echocardiogram (repeat due to 1 year passing since last ECHO) (IP) <WAIT SCHEDULING>

are also waiting on a few other things to be ordered after the completion of these, the next order batch is. All of the below are considered dead until converted to live orders.

• New wheelchair (CONFIRMED: WILL BE ORDERED, PAPERWORK TO BE SIGNED MORE) (OP, Duh!) <ACTIVE>
• Deep Brain Stimulator insertion surgery talk (new surgery in talks) (IP, Duh!) <INACTIVE>
• Tracheostomy & Ventilator, earlier the better. (IP) <PENDING CONFIRMATION>

Abilities Expo 2009 Click For Photos Image

Welcome Abilities Expo visitors and Alinssite normals. If you are in a rush for seeing the photos then just click the image above! Below you will find a detailed description of what I saw at the show yesterday and links to the exhibitors that I came in contact with. Unfortunately I am only one man and I did not cover every single exhibitor in depth.

Let the information and bad jokes flow!

Schaumburg Convention Center Sculpture

Immediately upon arriving I started taking photos and so did dad knowing that we had a goal to meet of 50 pictures, we burned the goal to the ground hitting a whopping 76 photos! All available in FULL resolution by clicking above!

Workin' it right to left | Rascal Scooters

Upon getting into the show we decided to work from the right to the left. First thing we sighted was the prominent Rascal Mobility Scooter’s booth, they had a large amount of scooters freely ridable by anyone in the show, just don’t try stealing it.

Invacare Top End Handcycle | Freedom Concepts HSR

After that I took a quick look in the tricycle and adaptive top end sports section. In this section I spotted an Invacare Top End cycle. The section was majorly dominated by Freedom Concepts Inc. who makes custom Tricycles, Bicycles, and Tandem bikes. I mostly looked at their HSR series.

PAWS For A Cause Disability Assistance Dogs

Moving on we saw PAWS With A Cause and their representatives, the main focus at their booth was autism and physical disabilities touching on hearing impairment. I discussed some of the things their dogs are trained for and also some of the specialty training that they receive for service for someone with both autism and a physical disability and I myself will be applying for a PAWS dog. I will keep the blog updated about that.

Paralyzed Veterans of America & Sports n Spokes booth

After that we made a short stop at Sports N Spokes booth which is a magazine that is published by the Paralyzed Veterans of America. Pretty cool magazine, they were giving out free copies!

Frog Legs suspension assembled

Next booth we stopped at was the Frog Legs Inc. booth which featured their full line of wheelchair suspension’s and products including a chair that has Frog Legs on it that has been used as a stunt chair. We discussed a bit about the Frog Leg and what chairs you can put it on, if it is a RWD FWD or Manual chair then you can probably put it on. If you drive MWD / Center Wheel Drive, you are unfortunately out of luck because of how they are built! Make sure to check them out if you hate bumps!

e-motion rims | scalamobil | THE DUET

After that we decided to wheel into some semi-powered chairs with the e-motion power assist rims and Frank Mobility Systems I got to see the cool new BlueTooth remote that controls the assist level of the e-motion rims and monitors basic parameters. We also saw the Scalamobil which is a stair climber Al’a’ iBOT3000 for manual wheelchair bases, on top of that we saw THE DUET which is a Tandem bicycle-wheelchair hybrid. All very cool products! Now all we need is a Scalamobil for Powerchair’s since the iBOT is no more.

The Quadriciser

Ahh, quite a bit of stuff we explored, time to get into the Quadriciser which is put simply, a medieval torture device… NOT! It’s a passive motion physical therapy system that is totally automated. Just strap in and fall asleep and let the machine do the work for you! More information about the torture… I mean therapy device at their website.

TeddysTs "Our Homes Not Group Homes"

After seeing the torture… I mean therapy devices I decided it was time to take a short break from all the rehab noise and get some humor from TeddysTs T-Shirt designers and sellers! Awesome shirts guys, and cute girls to boot! Their T-Shirts have witty sayings and come in custom sizes for those of you wanting it cut a certain way to fit a certain chair.

Time for a shower, Luxury Bath Systems

More like Accessible Bath Systems, Luxury Bath Systems a Chicago based company has been around for quite a while and has been spotted on my television during the brief periods I see their infomercials. Great product, by this time at the show I was feeling a bit pekid and could have used a warm shower! Too bad they weren’t plumbed!

CCS Medical, Catheters, Catheters, and Singing? Nah!

Now that we got one part of the bathroom deed done, we had to get the #1 done so we decided to stop over at CCS medical and take a look at their selection of catheters, condom catheters, and other urology and ostomy supplies. And no, apparently CCS does not stand for Catheters Catheters and Singing, Thank god! Cause I am unsure how good this guy would be at singing. Kidding again!

Swift Golf Carts drive right on the greens

A newer venture on technology, the Swift Golf Cart allows a mild to moderately disabled person golf right from the cart! The cart is accepted by most / all country clubs and golf courses as it distributes weight of the cart and person evenly leaving no more imprint than a person and their caddy! Pretty sweet, I bet the lazy beer chuggers and genuinely disabled golf enthusiasts will eat this baby up!

Stopping in at Roho

I stopped in at ROHO group to discuss some wheelchair seat cushion stuff and they showed off some of their brand new cushions including their RetroBack which allows you to make a real good back out of a crappy sling back wheelchair. We also talked about “Merlin” ROHO’s system that alerts you when your cushion is over-pressurized or under-pressurized.

I'm giving a keynote speech!

Xtreme medical supplies really got Xtremely interested in me and my condition and my knowledge and I ended up practically having a whole Keynote Speech at their booth, at least 10 people gathered around the booth mid speech and end speech as I spoke, more about that in the photos department. These guys deal with general medical supplies, ostomy, and urology, just like CCS. In the end the guy on the right put his tag on me and said “I lost my job to him!” We all laughed. Very fun guys to deal with!

Permobil C350 seating | Steve The Cheater, Walking one minute, in a chair the next!

After having some Xtreme fun with Xtreme medical supplies I stopped over at the Permobil booth to talk chairs, chairs, and chairs, and also talk about my next powerchair which possibly might not be an Invacare and might be a Permobil. All depends but they will bring a demo unit to the hospital or my house before I decide on a chair so I can try it out. The standing feature seems really useful for after I get my contracture surgery done to fix my contractures. We talked a bit on totally tricked out chairs and then finshed with Steve demoing a chair for me and it’s tight turning radius, after which he refused to get out of the chair. Thus I gave him the new name “Steve the Cheater!”

WHAT!!! for 25,980 dollars that better include the fire extinguisher!

Notice my emotion here, its kind of a WHAAAAAAT! HOW MUCH IS THIS VAN!!!?!??!! THIS BETTER INCLUDE THAT FIRE EXTINGUISHER!!!

There are PLENTY more photos than what I just showed here. Shown here is an overview! Click any photo here to be whisked off to the main photos site for all of the 76 photos I and dad took! Enjoy!

I Will be at Abilities Expo 2010 It is already in my calendar!

Jeff on the deck

Today it was a nice 87°F outside so me and Jeff my caretaker went outside as both of us like the heat, especially me. I was wearing as usual one of my silky long sleeve shirts and him a sweater and sweatpants, I still beat him because I win with thick neoprene harness against sweatshirt, but he wins for sweatpants though I’d have worn some if I had them… whatever. Click through for the photo gallery, we had fun with the camera.

Rodrigo, friend / nurse at the hospital

Today we went to the hospital and my doctors office. At the hospital we started with Dr. Sun my rehab specialist physician whom ordered me a new Occupational Therapy evaluation per our request to refresh an old one from two years ago. And she also ordered a CT Scan of my legs / knees to see what is going on with my contractures because they are unusually painful right now. After Dr. Suns appointment we went over to the Gastroenterology section and lucky us the surgery scheduler was there (not pictured) so we got my endoscopy scheduled for 8:15 AM July 22nd, you know what that means! Another countdown clock on the front page! You must be thinking “God this kid is nuts, him and his freaking countdown clocks.”

After scheduling my endoscopy I noticed a familiar face behind the nurses desk, my old buddy Rodrigo was there and I quickly drew him over for a hug since he is a good buddy of mine and also gives awesome hugs. After that I finally got his correct E-Mail, for the past year I had a @gmail E-Mail when his is an @hotmail, now I know why some other Rodrigo said “You have the wrong Rodrigo I don’t work in a hospital.” hehe. Rodrigo was complaining his hair is too long and he urgently needs a hair cut, I said it looks fine if not quite cute. After that I decided to talk a little bit with the surgical team about anesthesia and we got into some humor about Sevofluorane and even got into the Anesthetists Hymn which is a song by Amateur Transplants. After which everyone was laughing their asses off. Oh well, looks like everyone had to work five to ten minutes of overtime to offset the time I burned.

After that we went to my general doctor to get some CT scan orders sorted out along with some endocrinological and urological issues. Orders list is as follows

• Rehab Physician visit (Order follow up OT eval, Add Knee CT for contractures) [DEAD - COMPLETED]
• General Physician visit (Fix CT scan order, hormone issue fix) [DEAD - COMPLETED]
• Pulmonary Functions Test (resp problems, PFT is a default test every 3 months, 4 months passed.) (OP) <JULY 1ST 12:15 PM>
• Endoscopy (2 year follow up & suspected internal pressure ulcer from G-Tube + H. Pylori follow up PRIORITY!!!) (IP) <JULY 22ND 8:15 AM>
• CT head & spine w/o contrast and with contrast (repeat due to 1 year passing since last CT series) (IP/OP) <WAIT SCHEDULING>
• CT knees w/o contrast and with contrast (new problem by rehab physician, may combine with other CT) <WAIT SCHEDULING>
• Occupational Therapy eval (monitor disease progression) <WAIT SCHEDULING>
• Pulse Oximeter (ordered by pulmonary) <INACTIVE> [WAIT FOR BETTER INSURANCE]
• ETCO2 monitor (ordered by pulmonary) <INACTIVE> [WAIT FOR BETTER INSURANCE]
• Muscle Biopsy – See if there is a muscular dystrophy or other disease directly affecting the muscle such as progressive rhabdmyolysis. (Live – To be scheduled) (OP / IP at doctors discretion) <WAIT SCHEDULING>
  
• Toxicology panels (drug & standard) – See if disease caused by toxic mutagenic agent (Live – To be scheduled) (OP) <INACTIVE>[WAIT FOR BETTER INSURANCE]
• ABGs draw (IP) <WAIT SCHEDULING>
• Urodynamics study (under anesthesia or neuromuscular blockade) (repeat due to question of suprapubic catheter) (IP) <WAIT SCHEDULING>
• Echocardiogram (repeat due to 1 year passing since last ECHO) (IP) <WAIT SCHEDULING>

are also waiting on a few other things to be ordered after the completion of these, the next order batch is. All of the below are considered dead until converted to live orders.

• New wheelchair (CONFIRMED: WILL BE ORDERED, PAPERWORK TO BE SIGNED MORE) (OP, Duh!) <ACTIVE>
• Deep Brain Stimulator insertion surgery talk (new surgery in talks) (IP, Duh!) <INACTIVE>

---

• Rehab Physician visit (Order follow up OT eval, updates on new chair) <JUNE 24TH 1:00 PM>
• General Physician visit (Fix CT scan order, hormone issue fix) <JUNE 24th 3:00 PM)
• Pulmonary Functions Test (resp problems, PFT is a default test every 3 months, 4 months passed.) (OP) <JULY 1ST 12:15 PM>
• Endoscopy (2 year follow up & suspected internal pressure ulcer from G-Tube + H. Pylori follow up PRIORITY!!!) (IP) <WAIT SCHEDULING>
• Pulse Oximeter (ordered by pulmonary) <INACTIVE> [WAIT FOR BETTER INSURANCE]
  
• ETCO2 monitor (ordered by pulmonary) <INACTIVE> [WAIT FOR BETTER INSURANCE]
• Muscle Biopsy – See if there is a muscular dystrophy or other disease directly affecting the muscle such as progressive rhabdmyolysis. (Live – To be scheduled) (OP / IP at doctors discretion) <WAIT SCHEDULING>
  
• Toxicology panels (drug & standard) – See if disease caused by toxic mutagenic agent (Live – To be scheduled) (OP) <INACTIVE>[WAIT FOR BETTER INSURANCE]
• ABGs draw (IP) <WAIT SCHEDULING>
• Urodynamics study (under anesthesia or neuromuscular blockade) (repeat due to question of suprapubic catheter) (IP) <WAIT SCHEDULING>
• Echocardiogram (repeat due to 1 year passing since last ECHO) (IP) <WAIT SCHEDULING>
• CT head & spine w/o contrast and with contrast (repeat due to 1 year passing since last CT series) (IP/OP) <WAIT AUTH INSURANCE>

are also waiting on a few other things to be ordered after the completion of these, the next order batch is. All of the below are considered dead until converted to live orders.

• New wheelchair (CONFIRMED: WILL BE ORDERED, PAPERWORK TO BE SIGNED MORE) (OP, Duh!) <ACTIVE>
• Deep Brain Stimulator insertion surgery talk (new surgery in talks) (IP, Duh!) <INACTIVE>

Yay! Correctly fitting G-Tube

Yesterday morning we inserted my new correctly fitting G-Tube, why is it correct fitting, it looks the same from above you ask.

If you saw the old G-Tube which was 3.0 cm you will notice that it is so long I can fit my entire finger under it. A G-Tube like that is DANGEROUS it causes the stomach to fill too fast because it occupies more space than a smaller tube, it is at risk of being pulled out because it is easier to catch on objects. Therefor a properly fitting G-Tube is crucial. No, I am not saying you should get a G-Tube that fit’s so tight that you can’t get anything under it.

A properly fit G-Tube should only allow you to fit a pop can tab or dime under it. Any less and it is probably too tight, any more and it is probably too loose!

Click for more pictures.

Safari Logo

WARNING! AVERTISSEMENT! ACHTUNG! Whatever other language I can use to say ATTENTION / WARNING!

DO NOT UPGRADE TO SAFARI 4.0.1 IF YOU WANT 1PASSWORD AND OR THE OLD LOADING BAR TO WORK. IT RUINS OUR CURRENT HACKS.

Hot and sweaty me

Yesterday I had a lot of fun going to Long Grove to Beans & Leaves for one of moms Saturday concerts. I let dad do sound because the bushes there contained many wasps and I just felt like relaxing in the heat and sun. Grandma Lillian was there so we said Hi and did some basic meet and greet stuff, I mostly spent my time hogging all the sun and working on my laptop. I ended up coming home a sweaty mess but very happy. I could have fallen asleep if the band was not so loud, LOL!

I made a Youtube video which describes probably 100 times more than this stupid blog post will ever describe, the photos are also more useful. Cue the horrible jokes and adiblasi style whateva’s for the video.

Click here to go to the youtube player

Click here for photos

Victor Sikevitz (right) click for more

June 18th, Thursday of this last week was one of the days of Shiva for Victor Sikevitz, a man who will be remembered in Chicago and around the Jewish community that he has touched forever. On June 17th Victor Sikevitz was peacefully laid in his final resting place at Memorial Park Mausoleum in Skokie, Illinois. Victor Sikevitz was 93 years old at his time of departure. He is survived by his wife Catherine, and is the father of Gail Sikevitz and Stuart Sikes. He was grandfather to Jessica Carleton, Peggy Danishefsky and Eric Sikes. He was proud to be great-grandfather to 10. He was brother of Marty Sikevitz, Helen Krakow, and Leo Sikes; devoted friend, cousin, and uncle. Victor Sikevitz was not a run of the mill man, he touched many people both personally and professionally. He touched many in his professional career as vice president of Northern Metal Products, a company that was strongly involved in manufacturing metal products for World War II. To all who knew him he was a respected role model. He has volunteered in many places among Chicago in his lifetime. He was a board member and was the treasurer of Mount Sinai Hospital and very active in Chicago’s Jewish community for over 70 years. Victor was vital in the building of the Bernard Horwich Jewish Community Center in West Rogers Park and served as its second president. After retiring from his position as vice president of the Jewish Federation in 1981 he continued his volunteer efforts.

Shiva was moreso on a positive note the night that I had attended.

Those of you wishing to donate, please donate to the Jewish United Fund.

Victor’s Biography is available Here

A story named MILK written by Jessica Carleton is available Here

Please respect the above documentation’s copyright. These documents are NOT released under Creative Commons licensing like the rest of this website, nor are the photos! These documents are considered ALL RIGHTS RESERVED.

Not only do the documents carry legal protection they should be held as a sacred part of the memorial, so please do not abuse them! They are there in honor of Victor’s passing.

If you feel a need to re-post or want to copy this or any content linked from this post to another place please contact me immediately.