Alin's Site

Children's Memorial Hospital Logo

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.

Dr. David L. Spencer Orthopedic Surgeon

Advocate Healthcare Logo

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.

EZ-LOCK after carpeting

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.

Invacare Homecare Semi-Electric Bed With LUMEX Table

IKEA HEMNES Dresser

IKEA HEMNES dresser.

Click any of the photos to go to the gallery.

New Gate Installed On Deck

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.

Cloud and Tree

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

Frozen Disabilities Podcast

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!

Alinssite About Me Page

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.

Geneticist Dr. Carol Booth

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.

Questionable X-Ray Machine

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.