I am home as of about 6:00 PM. There is a lot of medical stuff that needs to be done this week. Follow up appointments and the such. We also have to work more on the mattress and stuff, and also we need to get a whole new bed so we can get height electronically adjustable since my arm strength is plummeting and I can’t push the syringes easily enough anymore and mom cannot bend to do things. So we need to get an upgraded bed. And also we need to get a bed scale, we have to keep track of my weight and I can’t stand on a regular scale. All that junk aside things are going well with the pain killer patch.

Everything is still fine over here. We are slated to leave tomorrow!

Our pulmonary specialist that we are scheduled to see on the 27th of July came to see me in my room and wants me to possibly have CPT done (Chest Percussion Therapy) It is designed to help slow progression of respiratory failure symptoms, he also wants me to get some other things which I will discuss in more detail after our visit to his office.

Moms friend came here today and gave me a giant “koosh” type ball that I have been obsessively rubbing for the last several hours, it feels nice hehe.

We are still at the hospital. So far everything is going as planned. We are very likely going to be out by Sunday!

Sorry for the ultra lame short “headline”

This morning we called the hospital as we were told to do so. They had a bed available so we packed our bags and arrived around 1:00 PM. We will be in for a few days. I will keep you posted. Today we had an EEG and the new painkiller patch is now on. More doctors will come see us tomorrow.

Today I went to bowling since we did not admit to the hospital today due to no beds being available. Hopefully one will open up tomorrow morning according to the charge nurse we spoke to. I got some video at the bowling today, the video is available by clicking Youtube in the menu to the left side of this post and all other pages. Today I had a great time bowling especially with Brianna, she is really fun to be with. I made some new RECORD scores. Of course these are not records compared to back when I was able to walk and everything. But compared to the first time bowling from a chair it is awesome.

The pediatric floor is full as of today, and so they could not find a bed for me today. They have some discharges going out tomorrow, so more than likely and almost defininitely tomorrow morning-ish. Due to the fact of this, I get to go bowling tonight! Bowling update, count on it!

The domain is fixed!

The reason the domains are so fragile and easy to break unlike the www.gosumosushi-steak.com domain is that the www.gosumosushi-steak.com domain is locked onto the server using an “add-on slot” that allows it to connect directly without using dirty redirects. It costs 35 dollars per domain for an “add-on slot”

The www.alinssite.info domain is broken right now. Apparently a redirect somewhere got broken for some reason. http://alinssite.iguido.com still works as that is a fail safe URL and is unbreakable. Even if that broke it would still be accessible through http://iguido.com/alinssite/

This issue will be fixed as soon as possible! I am working on it!

The front page picture has been changed to prevent “stale” look.

We are home from the doctor. My pediatrician said, if your rehab doctor wants to admit you then she needs to admit you, I don’t know how to write up an admission order for painkiller titration. (dose setting) So we called my rehab doctor and she said that she does not do admitting, she only admits for the rehab center, not general medical. So we will call my doctor tomorrow morning as it is already kind of late to admit. She said that we will tell him that she will be the acting physician (consult) but he will be the admitting physician.

I am heading to my doctor early afternoon, we spoke to my rehab physician yesterday and we all decided that number one, the only pulmonologist at Lutheran General Childrens Hospital that sees people in the office is off till July 27th which is too far to wait. And she also thinks an office appointment is worthless as we both agree’d that I should be in the hospital for my first patch to see if I have a reaction, since the most common reaction is respiratory failure in patients who have respiratory problems to begin with. I have respiratory issues to start with so we really have to do it in the hospital, just in case something does go wrong. Since doing it at home could be catastrophic, at the hospital they got ventilators all over the place ready to go for an emergency.

Yesterday we were at Strawberry fest in Long Grove. Mom and Tom her guitarist were performing. They were awesome, next time I should make a post a few days before so some of you viewers in Illinois can come see us. Me and dad tried to get video footage but none of it came out due to bad background noise issues. But we got loads of photos. Including some photos of me! We did not really go into any other areas other than the normal Beans & Leaves courtyard. Either way we had a lot of fun and I got filled up with ice slushees. As you can see above my tongue turned blue from all the ice slushees. Check all the photos out by clicking on me above!

THIS POST IS BACKDATED DUE TO A GLITCH. IT IS NOW FIXED! TRUE POST TIME AND DATE IS 6/20/2008 1:00 PM

We went and saw my doctor Amy Sun today and finally got all the justification documents signed for the various wheelchair upgrades that are now needed. We also discussed pain management and we all finally came to conclude that my current painkiller is not doing good enough, she gave us a prescription for a better medication however this new medication is known to cause respiratory depression. I already have respiratory issues so she is requiring us to get cleared by a pulmonologist before we can get the prescription filled. We will keep you updated on the status of the pulmonologist situation. They are still working on getting us those quotes for the powerchair parts. We will continue updates on that situation

Sorry about the “stale” photo. I took some photos this week but they were all of people and so I will need to get photo release permission before I can post any new pictures. So the “stale” photo above takes you to the “stale” gallery from last week.

This week all of us exchanged our details while we were bowling, We had another wheelchair here this week instead of just me and Brianna it was me Brianna and Greg who also has CP and also gave me his contact details. All three of us plan on doing things outside of NWSRA when the bowling program ends.

This is just a short update notifying all users that the “Orthopedics appointment done” and the “CMG and Uro-Flow study done” blog posts had some typos that have been corrected. No new content has been added to the post’s, so if you read it already you probably don’t need to read them again.

Thanks JLD902 (Jess) for alerting me to the errors!

Most errors involved transposition of a letter or two and some involved some letters completely missing.

Sorry this news is coming in a day late. But it is not very interesting. Yesterday we went to see the new orthopedic Samarjit Jaglan. The wait times were nearly nothing, he came right into the room. He evaluated things a little bit and tried to see if my legs can straighten out, yes but it was extremely painful and really tight feeling like my tendons were going to snap. This is because of the contractures I have which are still semi-flexible. He then unclipped my harness and I don’t know if he was surprised at how much kyphosis I have. He then told us that surgical correction is not possible due to the fact that it is not a problem with the bone or formation of the bones, it is a problem with the muscles that support the bone, they have failed. He said the only thing that we can do is wheelchair modifications and bed modifications to help reduce pain and increase comfort. Ok thanks, lets state the obvious. We will follow up with him in 1-3 years as we see necessary. But due to the fact that he is an orthopedic surgeon there is nothing much he can do. The person who we really need to visit more often and will be visiting next week is my rehab physician.

I went bowling tonight. The bus came to pick me up at 6:00 PM which is not the usual time. But it ran late due to how backed up the roads were today by the house. When I got on the bus I immediately locked onto a girl who in a wheelchair in front of me. I more than likely have a new friend. Will be getting her E-Mail next week, I am quite excited about that! We got to the alley’s and then unloaded and got me in and to our assigned lane. The style of bowling was so different. I mean I watched people bowl like this all the time. But I never bowled like this before. It was totally new to me. Next time I will take pictures of the device we all use to bowl. I was a bit hesitant to take pictures today since I didn’t know about release laws and that. But I found out as long as I ask the person I am photographing and explain that it may wind up on the blog or in my gallery I am fine. The device is put simple similar to a bridge used in pool. But it consists of a metal ramp upon which an assistant places the ball upon. Then user is to push ramp into desired angle, and then push the ball or spin then push.

Starting tonight and going on every Wendesday night for a while, I don’t know when this ends. I will be going bowling. Tonight will be the first time I have ever bowled since loss of my walking ability. The last time I bowled I was sluggish moving around the place but still walking. I will see if I can get some pictures. But don’t expect extremely high quality pictures as I will only be taking my iPhone / iCamera / iCamcorder.

I will report when I get home.

Some of you may already know that Quality Healthcare Equipment is no longer able to service us for G-Tube feeding supplies and we ran out of supplies for their pump which was a Kangaroo 224 about a week ago around Monday give or take a day or two. I absolutely loved that Kangaroo 224, very quiet and easy to use pump. We first tried switching to one company which was a huge mistake, their representative would not stop talking while we were trying to convey my initial order and needs and one of those needs was a quiet pump du to my autism and sound sensitivity, he said that we would get a Zevex Enteralite Infinity pump. They lied, the next day they delivered a Novartis COMPAT pump which was huge and loud and very difficult to use. We tried it for a few nights and i could not sleep with this monster pump ticking and clicking in my ear. Last Friday they finally delivered the Zevex Enteralite Infinty pump which was a tiny and nearly silent pump, the problem, they sent 500ml bags when I require 1000ml bags. Which were shipped with the first pump. We got so sick of this we finally called on Saturday to Apria’s emergency line and made an emergency order which was delivered on Monday night at 9:00 PM by a woman named Jill who was very friendly got us set up, warehouse did not give her the correct clamp for my pump model but that was fixed on Tuesday. But for monday night and Tuesday morning we had the pump duct taped from the bottom to the rolling hospital table. I love this pump like I loved my old one. If you ever need a feeding pump ask for a Kangaroo pump, they are the only pump I will ever use.

I will work on getting photos of it on the pole tonight or tomorrow.

I just got the new release Everything works fine. Even the bugs I reported got fixed. Hope it stays fixed!

Last Friday we went downtown to Children’s Memorial Hospital Clark & Demming outpatient building to the Urodynamics office to get the testing done. I was stupid on my last blog post regarding the CMG and V-CUG and mistook the Uro-Flow study written on the papers for a V-CUG which involves X-Ray. The test last Friday did not involve X-Ray. Today’s test involved several sensor’s a urodynamic study catheter, and a specialized pump and computerized monitoring system. The first step was inserting the catheter. This was a quite painful for me due to my spasticity causing my muscles to clamp down on the catheter and make insertion difficult. Then they did an initial sterile urine culture to be sent to the lab. After this they shaved small areas on my legs and butt and stuck electrodes similar to an EKG on those areas. They then hooked the catheter up to the machine using two ports on the catheter. One was for infusing liquid into my bladder, another was for pressure sensors. They infused 1475 ml or 1.47 liters into my bladder before I felt pain, they really want to see the muscles of the bladder contract and react to being full but mine did not for some reason. After that they immediately opened the catheter drain port and let me urinate. Then they repeated the infusion again and got an approximately same result. Overall this test was among some of the most painful tests I have had. But the nurse named Brenda made it a much easier test for me by keeping me emotionally stable throughout, only around the end did I tear from the pain of the catheter being removed, If you have spasticity this test is a curse!

*hugs for Brenda!*

It is the exact same problem as the powerchair. No one but one company that is out of network has the mattress I need. I will call Quality Healthcare Equipment monday and find out if they have the mattress, I can’t call tomorrow since the rehab person is not in until Monday due to vacation this week. This also means that the network deficiency claim on the powerchair has to wait until Monday because we have to get quotes on the equipment needed. On monday I will also ask if they have the mattress. There is another company here in our city called MedServ who can order the mattress for us if we need it. But they are like Quality Healthcare Equipment and do not take our insurance. Aetna insurance to me seems quite anemic in the selection of Durable Medical Equipment Providers.

Due to that IEP meeting we had at 1:00 PM today we had an issue when we came home. By the time we got home it was already too late to get the scanner out and digitalize the stuff from the doctor to fax over to Apria to order the new Invacare Solace Therapy 3000 mattress and be able to get it faxed in by 5:00 PM. The good news is that we will for sure be able to get the order in tomorrow as we have nothing to do tomorrow except go to the hospital in the morning and pick up some X-Ray disks’s from my recent spinal series. We ordered two disk’s one for us and one for the doctor. We like to keep as much of our own file as we can.

Today at 1:00 PM we had to go for my IEP meeting to begin working on organizing the new online system that should start this summer. I do NOT foresee any changes in the way I maintain my website and communicate with all of you. But please note that if needed I will make cutbacks starting with non vital things like the forum. Mind you that in the event of that I would NOT close the forum, just not be on it as much. Again I don’t forsee any problem as I can just stop burning time online. About two to three, sometimes four hours per day wind up burnt.

The doctor has signed the papers for the Invacare Solace Therapy 3000 mattress. But we JUST got home so I can’t get it ordered today. Will have to order it from Apria tomorrow, to deliver hopefully thursday. My doctor also had me fix some things on his computer, he is definitely a gadget whore!

We switched to a new orthopedic, without even seeing David.at Advocate Lutheran General Hospital. The reason we decided to do this switch was the disocvery that Dr. David is not a pediatric specialist, he is an adult / pediatric combo. Me and mom prefer to go to pediatric only specialists due to my size and medical fragility so we decided to look on Advocate’s website for a pediatric only specialist and found Samarjit S. Jaglan at the Yacktman, he doesn’t have an office at the Yacktman Pavilion but he is staffed at that hospital. And he is a socliosis, spinal deformity, and hip dysplasia specialsit. I have all three. The appointment will be Next Thursday

Boy my sleep sucks, don’t we all know that already. Here is a little news clip I forgot to put out there. Make-A-Wish had to contact my doctors for travel clearance due to the unstable nature of my medical condition. They all came to agree and allow the travel. I decided to do some research as to what we would do in the event something went wrong medically. In the event something goes critically wrong I know that Morgan Stanley Childrens Hospital of New York-Presbyterian is nearby and very accessible looking in the event urgent transport to the hospital were necessary. Google reports that it would be a 1 hour and 10 minute drive with traffic direct from the door of the NYSE, but I figured in for how ambulances get around and came out with the caculation of maybe 10 to 20 minutes to get to the hospital. I do not forsee any immediate dangers however anything can happen, especially with how pressure affects the body in air travel! I will continue to make frequent updates immediately after a status update is received from Make-A-Wish.

We are having big issues with the insurance company and my powerchair. As you all know I need to get a new moulded back made because my spine has changed and the current one that is on the powerchair is for my spine as of six months ago and it has changed drastically since then. We got the powerchair when we had Blue Cross Blue Shield of Illinois, a great insurance company, the powerchair had a few small stupid claim errors that we are in the midst of fixing like “what are the batteries for and why does he need them?” and “What is the headrest for and why does he need it?” along with “What are the Transport Brackets for and why does he need them” were some of the questions the insurance company asked, I laughed my ass off at the stupidity of them but we explained the justification and need for the components. They said that it is very likely it will get paid for.

But now we have a big problem, we now have Aetna insurance, this Aetna thing has been a real pain in the butt, we had to switch from our good old company Quality Healthcare Equipment for my G-Tube feeding supplies because they are not “In Network” with Aetna. Quality Healthcare Equipment was the ones who got me the powerchair, they are the ones who know how it was configured and how it needs to be configured. They referred us to Apria but their office for rehab technology is in Burr RIdge, IL which is way too far for us to travel. I contacted Aetna, and tried calling several other medical suppliers. None of which do custom powerchairs. Quality Healthcare Equipment is the only one that can serve me and is close enough for us, they are only about five minutes away. We are currently using Walgreens HomeCare - Optioncare for my G-Tube supplies, but they do not do custom wheelchairs, and we are currently using Apria for the hospital bed and its related things, but their custom powerchair office is all the way in Burr RIdge! So we will need to file a “Network Deficiency Claim” with Aetna so that they can take an “Out Of Network” provider, namely Quality Healthcare Equipment and consider them “In Network” I will keep all of you updated on this situation.

Tomorrow we are going to my doctor to get an order for a specialized pressure relieving mattress from Invacare. To be specific the Invacare Solace Therapy 3000 which is the highest end of the pressure sore prevention mattresses, we are having problems with pressure sores with me as of right now. I already have a few Stage I pressure sores which are simple reddening of the skin with very minor internal damage, pressure sores progress rather quickly so we are going to get this mattress RED HOT RUSH ordered so we can get it on hopefully Wednesday. The pressure sores are being caused from several things, one major one being my bed since that is where I am spending majority of my time due to my powerchair’s moulded back being no longer suitable. And also the second cause for the Stage I sores is my incorrect back on my powerchair and I have no choice but to use the incorrect back for now due to the need for mobility. We hope that the pressure control mattress will help us avoid the pressure sores from advancing and hopefully allow them to heal and prolong the time we can go until we can get the new back for my powerchair made.

I decided to upgrade to RapidWeaver 4 and am having a few issues with it. When importing large resolution images like ones taken with my camera it tends to slow things down by a large scale. My typing will seem “laggy” or delayed by half a second for everything I type. Luckily its not data loss. But it still is a very annoying bug. The image above was no sweat due to its small resolution! I contacted support and am waiting for a reply. I found another annoying little bug in the software in the way the preview system works. Clicking on the preview button in the old version after resizing an image refreshed it right there and then. On this version it took two clicks to get it to refresh. What a dumbass I am for upgrading to new software the day of release. I thought upgrading instantaniously on a mac was fine, but I am proven wrong, its just as bad as upgrading the day of a Windows program update. At least unlike Windows it still functions only with annoyingness.

Yesterday at 4:00 my mom and her friend Tom had a concert in Long Grove, IL. I as usual stationed myself at Beans & Leaves coffee shop and had some free drinks After that I took some photos at the stage and then headed back to the coffee shop for more drinks and also some talk. I took lots of photos so check them out by clicking the ones above.