Alin's Site

Rehab Dr. Amy Sun

Whoa boy, this was a big visit for getting orders and prescriptions. I communicated my need for several wheelchair components including a communication device mount, which the laptop will go on. A power converter, and a recline system. She approved them all and signed them on the spot.

Next we discussed how my new headrest has impacted my neck positively, we wanted to take that effect whenever I am not in my chair too. She suggested a cervical collar so I be off to research cervical collars now, toodles! The reason she suggested it is several. One it will help correct the kyphotic deformity in my neck, two it will compensate for my weakening neck muscles supporting my big heavy head hehe.

Toshiba Digital X-Ray Machine

Today I Had my X-Rays taken. This included my standard full spinal series and cervical spine series. They also threw in a chest X-Ray to check on the infection I had in my chest which showed barely on the last chest X-Ray but it was there, so if it does not show up now I am clear and the coughing spasms are something else! The they also did a Baclofen pump series to check the placement of the pump and catheter to make sure nothing slipped out of place.

I had a lot of fun with my Radiology technician and Radiological nurse, we were all talking X-Ray geek speak about the newest machines and also X-Ray technology and where it is headed.

The X-Rays were taken with James and Tammy who are my most loved pair of Radiology technicians in the entire pediatric radiology center.

And yes, you bet there were lots of hugs as usual. Gotta get hugs before – during – after my X-Rays. It’s a tradition me and my technicians have built hehe.

Neurosurgeon Dr. Shaun T O'Leary

Yet again today I got my Baclofen pump kicked up 20% we went from 180 Micrograms per day to 216 Micrograms per day. Every time we see a small improvement in something. Today we saw my arm range of motion increased a bit. We also had a long talk about various things. Mom will be going to him to handle her compressed disk and nerve issues.

I also asked him about my idea of a neck brace to help with my cervical spine issues and also with my weakening head and neck support and he completely supports the idea. (pun intended)

Neurosurgeon Dr. Shaun T O'Leary

Toshiba Digital X-Ray Machine

Rehab Dr. Amy Sun

Today I am going to my neurosurgeon to get my baclofen pump kicked up yet again and also discuss some plans for toehr things. After that I am going to go down to X-Ray for my favorite X-Ray series, my spinal series. Then we will head over to Dr. Amy Sun to get some new wheelchair ugrades signed.

Neurology Dr. Mohammad Ikramudden

Advocate Healthcare Logo

Not much interesting going on with the whole illinois state to get me a new IEP one that actually works for me not against me.

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Advocate Lutheran General Childrens Hospital Ambient Suite

Today I had my renal and pelvic CT scan done. This is my second CT scan in my life, last time was in E.R at Northwest Community Hospital. This time I had it in the Yacktman Pavilion at my own hospital for the first time. I swear to god I am going to make sure all my non emergency CT scans are done here.

Square rooms are out, oval is in. Static unlit walls are out. Movies and bright colorful lighting is in. Plain ceilings are out, again movies on the ceiling bright lighting. Dull sound of nothing but the CT scanner running is totally out. Soundtracks from your scene scape are totally in. Once you are in this room you wonder if this is amovie theatre,or a radiology suite, or a night club. It’s a bit difficult to tell the three apart. Absolutely felt awesome getting my CT taken today, my mind was in another world while my body was getting poked and prodded, that is the exact goal of the Philips ambient suite, is to get the mind somewhere else leaving the body for poking and prodding. So I had huge fun today! Hey doc, order up another CT why don’t ya!

I am now registered on patientsllikeme.com under ALS/Motor Neuron Disease. Now we don’t have confirmation that it is ALS/Motor Neuron Disease, but that is our most likely candidate. That aside you can now get a really good grip on my medical progress through this button. Click at and learn more about me from the medical end!

Warning: Misuse of any of the information displayed at the external site is a federal crime, if you are found to be abusing the information you will be kindly asked to cease usage. If you use the information to attempt to physically harm me or my family you will be prosecuted to the fullest extent of the law.

In other words, just read it, and use it to gain knowledge and learn about me, don’t do anything else with it.

It is also on the side bar permanently!

Me and my Cough Assist Machine

Today a cute girl named Courtney from Apria came once they had received the programming parameters for my Respironics Cough Assist machine. She set the settigns and then ran me through the procedure and made me repeat it back for safety. This machine is very powerful, definitely not something to go willy nilly and tweak on your own. I have been ventilator’d before but this thing is ridiculously powerful. Think of a ventilator that fills your lungs near bursting point in air at high pressure in about two seconds, only to suck it out in two more seconds. Once you get used to the way it feels it feels pretty good since you can feel the stuff in your chest moving up and out. Although there is no trach and I only use it about 20 minutes a day it is still considered a ventilator because it sucks and blows. And I would have to say, this thing really sucks.

Hope the dang “cough” spasms stop soon. I think they should now that I am working on removing the gunk from my lungs.

Respironics CoughAssist

Today my Cough Assist machine was delivered. Or should I say for now, my Cough Assistless. Our Respiratory Therapist Suzanne was awesome. She waited for us for a whole two hours as we badgered the doctor’s office to get the programming info out of them. She set it up anyways. We had a lot of fun making ventilator jokes and talking about ventilators and respiratory equipment. After about two hours we finally decided to give up. Hopefully tomorrow we will get the programming details!

Until then, the cough assist machine is a cough assistless machine.

Dr Gabriel Aljadeff Pulmonary

Respironics CoughAssist

Drug Bottles

Today we went to my pulmonary specialist for an emergency visit. Things did not turn out good today. A ventilator did not get involved today, but no one knows when one could suddenly get involved. However today he checked me out and noticed I was on the Biaxin and said, forget Biaxin switched me to another, maybe stronger antibiotic. Pending this switch he sent me down for an emergency chest X-Ray to rule out rolling pneumonia, which is walking pneumonia reworded for us people in wheelchairs. The X-Ray was “stat – wet read” which I laughed at since it’s digital, I love it when they use archaic terms that totally contradict technology. They read it and I was extremely lucky, I was pretty damn close to pneumonia. The Cough Assist order that was delayed until further research into the device could be done is being activated. He is hopeful that I will be able to tolerate the device, if not then we are going to have huge problems.