Thursday, August 6, 2009

The perfect day

Friday, July 31, 2009

Home at last!

Sunday, July 26, 2009

Friday, July 24, 2009

Mitch at the Movies

Please bear in mind that i'm new to video blogging so there are a few mistakes. I'm unable to figure out editing so it's pretty rough.

Tuesday, July 21, 2009

My first attempt at video blogging

Please ignore the ending It cut off before I could finish.

Sunday, July 19, 2009

Adam Lambert: "Mad World"

This is my favorite performance of Adam Lambert performing "Mad World" one of my all time faorite songs. He performed that very song at the American Idol Live concert. Seeing him perform it live totally blew me away. In my opinion Adam should have won American Idol...At least this way he won't be under Idols control and he can do the music he wants.

Sunday, July 12, 2009

A Friday Night to Remember

You might not know this from reading any of my previous blogs but I have a love affair with American Idol, the best show ever made or it least it is in my opinion. What does this have to do with my Friday night? Well I got to see all the top 10 finalists give a performance of their life front of thousands of people at Arco Arena the legendary home of the Sacramento Kings. Okay they're not so legendary anymore but I wanted it to sound exciting lol. Anyway back to the story at hand. For my birthday this year my 24th birthday my generous loving mother purchased tickets for me, herself, and my little brother. The day of the concert started out pretty mundane and boring... my wheelchair needed an evaluation to see if it needed any repairs so it had to be brought to the shop without me in it and since I have no backup wheelchair that can adequately fit me I had to lay in bed the whole day, it felt just like I was back in the hospital except I knew by the end of that day I'd be in for a huge treat. My wheelchair finally made it back to my house at around 4:30 PM- that's right folks I spent that many hours in bed how fun. At five o'clock I was finally up and adam and ready to see the show of of lifetime and to see my favorite idol Adam Lambert perform. Our seats were way up in the stratosphere at the absolute highest point in the arena, from these seeds the performers look like ants moving about on stage, although they were nosebleed seats we still worth site just to be in the same room room with our favorite performers. When I first arrived at my seat I started to feel a little funky; I felt a little light headed. What sunds like a benign symptom can be a serious problem for someone that is on a ventilator... it could mean that I wasn't getting enough air or possibly too much air it's a very fine balance so I had to be checked out. My mom rushed downstairs to find a medic ad she was successful in her mission. After what seemed like an eternity my frantic mother returned with the medic who to my great surprise I recognized! She was of all people the woman who was one of the medics to respond to my mother's 911 call about we choking back in August of 2008. You could say he saved my life. anyways after we set our hellos he immediately got to work checking my oxygen saturation and heart rate with a portable monitor which simply slips onto my finger. Luckily everything checked out my 02 was that 97% a normal reading whew! I jokingly stated that the high-altitude of our seats cause what I was feeling and my mom and brother got a kick out of that.Now that everything was okay we proceeded to enjoy a fabulous show, I soon forgot about my lightheadedness and had an awesome time. I wouldn't let a little thing like my health keep me from having an enjoyable time, I have learned to just forge ahead when things get tough if I sat and dwelled on things I would miss out on a lot of opportunities that make life worth living. Luckily the lightheadedness faded about halfway through the show.

Saturday, July 4, 2009

Happy Independence Day

wishing everyone a fun and safe day.

Sunday, June 28, 2009

Long time no hear

No I wasn't abducted by aliens, kidnapped by terrorists, and I am not deceased. There simply hasn't been much going on that I deemed interesting enough to blog about. I know you must be missing me very much or at least I hope so lol. Anyway here is a quick update.

My health is doing pretty well despite a very low grade temperature of 99.0°F that quickly went away the day before yesterday. besides that everything with my health has been pretty much normal nothing really stands out in my mind that warrants reporting.

For the past two Fridays I have been spending time with the pride and joy of my life my nephew Zayne. He's an adorable 15 month old with the biggest brightest smile I've ever seen a baby make. He is the only son to my older brother Matt and his lovely wife Laura. Zayne is my first nephew and my younger brother Brett and I are very proud to be called uncle :) He just learned to walk and now he's all over the place getting into everything, he's especially interested in my medical equipment and even tries to grab my trach! Maybe he wants to be a doctor or a nurse? Kidding asside what he really seems to be interested in is baseball and playing instruments. He loves playing catch and adores the maracas and xylophone we bought him for his first birthday. He takes his maracas all over the house and hardly ever puts them down. I am pretty sure he's going to be a musician; he must take after my grandfather since he was the only one with musical talent in the family. My mom loves to be "Grammy" and Zayne brings so much joy into her life, he really makes her laugh. Zayne brings so much joy into my life as well, he has a way of brightening even the gloomiest of days.

Sunday, June 14, 2009

Follow-up Article

This Thursday I again met with Chelsea Phua a reporter for the Sacramento Bee. the previous article was such a big hit that she decided it needed an update as to not let down the fans.

Thanks again Chelsea for your wonderful contribution to my life, you are truly an amazing person and words cannot describe how thankful my mom and I are to you. None of this would've been possible without you.

You can read the article here

Thursday, June 11, 2009

Stress Relief

Amidst all the craziness going on with my health lately; chest pain, x-rays, a CT scan, blood tests, an EKG and a new discovery that I am extremely anemic due to lack of iron, I decided I needed some stress relief so today I decided to catch a movie. This time it was Disney Pixar's Up a charming tale about Carl Fredricksen, a 78-year-old balloon salesman, finally fulfills his lifelong dream of a great adventure when he ties thousands of balloons to his house and flies away to the wilds of South America. Yes I did copy that from the offical movie description from; I know i'm a lazy guy. Joking asside the movie was absolutely brillant. It has something for aferyone, action check, drama check, comedy check, stunnig 3D visuals check, an enthralling storyline that kids and adults can equally enjoy check and check. Somehow the folks at Pixar were able to create the perfect movie, a movie for everyone! Up was by far one of the most entertaining movies I've seen in years and it was just what the Dr. ordered to Relieve Stress.

Sunday, June 7, 2009

one hectic week

Today marks the end of one heck of a week in my life filled with ups and downs twists and turns and help you understand all that has gone on in this week I'll have to break it downin a numbered list.

1. I have been feeling chest pain on and off for the past week as well as an irregular heartbeat and even had to go to the ER. They ran a CT scan to check for a pneumothorax for hole in my lung, drew blood to test for signs of a heart attack, and took a chest x-ray. What did this battery of tests show absolutely nothing everything looked completely normal which was a shock and a release at the same time. At least I know it's nothing life threatening. I would like to know what caused the pain though so I am going to go to my cardiologist for a full cardiac check.luckily my heart rate has been steady for the most part and I haven't had a more effective pain.

2. The fund raiser has achieved something I thought was impossible we have reached a $15,000 mark all thanks to that amazing article. the amount of love in this world astounds me. thanks again from the bottom of my heart for anyone who has donated to our cause. God bless you!

4. in spite of everything that has gone on with my health I decided I needed to do something to take my mind off of all of the stress so I caught a WNBA basketball game featuring the Sacramento teamknown as the Monarchs and their fiercest rival in the Seattle Storm. my wonderful friend Amy hooked my mom and myself up with amazing seats in a suite!The game was amazing those women can keep right up with the Guys, if they weren't sporting ponytails and breasts I would have never known women were actually playing they are that good. I was amazed at how tall they were for women tallest member of the storm was 6 foot five. both teams put up a valiant effort and for most of the game and the score was very close. In the end my favorite the Sacramento monarchs met defeat but not after putting on one heck of a the end the Explorer was 61 to 71. We had a blast.

Wednesday, June 3, 2009

Overwhelming Support

Amy Bush my dear friend who put together the fundraiser got the surprised of her life when she walked into work yesterday. Sitting on her desk were over 80 checks, money orders, and letters. Apparently my article had touched the hearts of a enormous amount of wonderful people. I knew my article would have impact but I had no idea how big the impact would be. I am so touched by the outpouring of support and love I have received. With all those checks and money orders we were able to raise a grand total of $10,000 an amount that made my jaw drop and eyes pop out of my head. I thought it was dreaming when Amy told me how much love we have received. I have a newfound faith in humanity that I never thought was possible. From watching the news and other media you get the impression that the world is filled with awful people with no heart. Let me tell you that that is NOT true in any way shape or form there are plenty of decent, kind hearted, selfless individuals who really do care. Today I am tasked with writing thank you letters and all those individuals who helps us keep and repair our home. Life is amazing!

Monday, June 1, 2009

The Cadillac of Trachs

For the last 4 months or so I've been having an unusual problem that has effected my quality of life immensely. Mucus has been pooling above my tracheotomy tube in the back of my throat that I was unable to cough up no matter how hard I tried. Having the secretions above my tube made it very difficult to talk, when I would talk it would often sound like I was underwater or in desperate need of suctioning, sometimes no sound would come out at all. This made it very hard to socialize since my voice could cut out at any time, it was embarrassing frustrating and very depressing. I went months thinking I would always sound like that and I would have to live with it for the rest of my life. This all started when an experimental tracheotomy tube was placed in me back in February when I had surgery to open up my stoma or hole in my neck. It turned out there was a problem with this experimental tube, it didn't fit in me properly and stuck up in the air 45° out of the hole which was very harmful to my trachea. After two months of having this tube in my neck it had caused my trachea to change shape. This is what I believe cause my problem with secretions pooling. It around this time a glimmer of hope began to shine, a knowledgeable ear nose and throat nurse told us about a brand-new tracheotomy tube that had a port to section above the cuff which would allow the secretions to be removed alleviating my problem. Only one thing these tubes were in very short supply as they were only being used on a trial basis by the hospital. Luckily today after months of waiting I was able to get my dirty little hands on one my doctor found one and put it in me. Today I went in for my routine monthly trach change, everything was routine about it except for the fact I would be using this coveted new tube. This too was exactly 1 mm in diameter larger than my previous model so the Dr. was unsure that it would fit. She informed me that the it may be quite painful to insert disc two has the larger tube. This had me quite anxious but I knew I had to go through a fit if I wanted to improve the quality of my life. To my astonishment the new tube slid right into place with no problem! I was so relieved I felt like singing. I no longer had to live with embarrassment and shame about a speech problem I could finally breathe a sigh of relief.

Sunday, May 31, 2009

Hot Off The Presses

Today I was awoken at 9am by the familiar sent of fresh newspaper wafting through the air. My Mom greeted me with a smile and an ordinary newspaper, ordinary in every way except for the fact that my face was plastered on the front of it! Nope I wasn't still dreaming while in a peaceful slumber this was real as real as anything can be. The article I've been eagerly awaiting had finally been published!

Special thanks to Chelsea and Brian for doing a phenomenal job on this article and for giving me this wonderful opportunity to show people what life is like with Duchenne muscular dystrophy.

copy and paste this address into your browser to read all about it

Thursday, May 28, 2009

Interview day

Today I had a small audience while going though my daily routine. Who were these people? you ask no I wasn't being stalked by the paparazzi I was being observe by an intrepid reporter named Chelsea and her sidekick an over 6 foot tall photographer named Brian. As I mentioned before I was being interviewed and observed for a newspaper article about me, my mom, and my life with the devastating disease known as Duchenne muscular dystrophy. This in-depth article will cover every aspect of my daily routine and how I deal with this disease on a day-to-day basis it also covers what things are like from my mom's perspective as my almost full-time caregiver.they got to see every aspect of my complicated routine which starts by rolling me being rolled onto my back when I wake up, positioning me to watch TV, administering my morning meds, feeding me two cans of nutrition via G-tube (one can by gravityand one by feeding pump), after that comes a breathing treatment using an IPV machine which gives me percussions and moisture into my lungs to loosen up And mobilize secretions, after that 20 minute treatment it's time for a bed Bath, after the bed Bath it's time for trach and G-tube care where we clean around both of the stoma's or holes, after that it's time to get me dress which takes about 15 minutes, after I get dressed my mom moves my ventilator from my bedside to my wheelchair, now it's time for a transfer which involves using a hoyer lift or Crane to lift and maneuver me to my wheelchair, once I am safe and secure in my wheelchair I simply have too shave, brush my teeth, and call my hair now I'm all set for the day. While the reporter was observing my routine and the photographer was snapping pictures I was asked some questions about life on the ventilator and how having a life-threatening disease has changed my outlook on life. unfortunately the reporter got called to another story and had to leave halfway through my routine. Fortunately the reporter stayed to snap pictures which in my opinion can say more than words ever can. This guy must've snapped over 600 pictures while he was here he even followed me to an appointment with my Department of rehabilitation counselor.for those of you who don't know little barware rehab is the state run organization that is helping me find employment. after the meeting with my counselor the photographer Brian conducted a mini interview with a tape recorder to use with the online article. He let us talk about what we wanted to and didn't ask us any questions. My mom and I decided to talk about how this disease has impacted our lives and how it changed our outlook, life.

I admit it was very weird to have someone watching my every move for a day but it was more than worth since this article will give outsiders an idea of what living with a disability is all about. I would do it again in a heartbeat.

Tuesday, May 26, 2009

Terminator Salvation mini review.

the good: The special FX are of top notch quality, right up there with movies like War of the Worlds and Transformers. You could swear the 50 foot killer robot was really standing in front of you about to squash you with it's giand robo foot. It's that realistic.The action was also top notch, this was the most explosive adreniline pumping lightening fast action I have experienced in years. You literaly feel exausted after the experience that is Terminator Salvation. Don't come to this movie expecting a relaxing time you will be dissapointed. This movie is every action fans dream.

the bad: Yes this movie is great but that doesn't mean it doesn't have it's share of problems. For one the plot is pretty thin, don't expect anything deep or revolutionary here. It's the standard mindless action movie fair with little time spent on character development. This is somewhat excusable as the other movies in the series fleshed out the character of John Connor. This however does not excuse the the lack of devolopment for new characters like Connors pregnant wife who you really learn nothing about. All you know are three facts she's pretty, she's pregnant, and her name is Kate. Besides that the movie really is great. The action and FX more than make up for the weak plot.

I give this movie a 3 1/2 stars out of 5

Monday, May 25, 2009

Happy Memorial Day

Wishing everyone a fun safe memorial day. Please take a moment of silence for all the brave men and women who died fighting for our freedom.

On a lighter note I'm just relaxing today enjoying the gorgeous 80 degree day and I'm going to a movie with my brother later on one of my favorite passtimes. We're seeing Terminator Salvation. I'll post my full impressions and a mini review tomorrow.

Friday, May 22, 2009

Extra! Extra! Read all about it!

Yesterday I recieved some very surprising news. My humble little family and I(my younger bro, mom and I) are going to be featured in the newspaper. You heard correctly folks this quaint little blog and my fundraiser made it to the attention of a reporter of the Sacramento Bee! Chelsea a very accomplished human interest reporter heard about our plight through Amy Bush who put together a fundraiser to either pay down or payoff our mortgage. (You can read more about my fundraiser in an earlier post. This reporter wants to do a human interest story about us and is conducting her first phone interview today with my mother Heidi. Then next Thursday she is going to come to our house and watch my whole routine so she can get a feel for what it's like to both care for an individual with a life-threatening disability and what it's like to be an individual with such a disability aka me. She will also did do it interview with me searching their feel for what my life is like. This groundbreaking development should do wonders for our fundraiser and for my quaint little blog it might not be so little anymore I am going to have a serious following I have a feeling. I am very humble about all this as I don't think my life is all that interesting or really all that difficult. I just live my life giving little thought to my disability it's what I'm used to. I never thought I would be featured in newspaper especially a big one like the Sacramento bee. It should be a very interesting experience to say the least.

Tuesday, May 12, 2009

a 24th birthday to remember

for those of you who are unaware Saturday May 9th was my 24th birthday. It's hard to believe that another year of this life has gone by, I can't believe I'm already 24 it seems like yesterday I turned 21. To celebrate my birthday's it's usually a immediate family affair consisting of a small get together with a cake and something delicious for dinner. We open presents talk and just enjoy each other's company friends are usually left out of the mix. This year I decided to do something a little different this time I wanted to hang with my buddies. I have decided to go to a movie with my friends but besides that I couldn't think of anything else to fill the day. So my mom brainstormed for a few days and finally came up with the perfect idea of going to a comedy club. It's a great place for people my age to meet with a couple of buddies on a Saturday night. The buddies that I invited were Kenny 23, he is a friend of mine that shares my same disease and we go way back all the way back when I was six years old. the other friend I invited was Austin 20, he and I have only been friends for about a year but we already have a great friendship. He's a very kind and compassionate guy it was a lot of fun to be around. We met about a year ago at the disabled teen ministry called walk on water which I mentioned in a previous post. The movie we decided to see was X-Men origins: Wolverine... Wolverine is my favorite X-Men character and I thought the movie looks spectacular thiazide it would be the perfect movie for my birthday the movie turned out to be just as spectacular as I had imagined for the best action movies I've seen in a very long time and all three of us had a blast. The movie started at 3:15 in the afternoon and the comedy show didn't start until 8:30 at night.that left us plenty of time to go back to my house to enjoy a meal of spinach ravioli and a green salad I myself cannot eat such things so I had a strawberry milkshake. after we ate there was enough time to relax and open up presents before it was time to the comedy club. The first the comedy club that night was featuring three comedians one of which was on a sitcom called Gary unmarried and I can't for the life of me remember his name. He actually turned out to be the least funny of the three in my opinion go figure, most of his jokes were dirty and sexual in nature and I'm not the kind of guy who enjoys that brand of humor. The other two were a riot, the first guy made fun of things people encounter in their everyday lives, nothing dirty just good clean humor he didn't even swear! To me the best comedians are the ones who can make people laugh without putting their minds in the gutter. The second guy was slightly less cleanbut still hilarios, the "Loser" as I call him made fun of himself the whole time about how dirt poor he was it was a hoot. This has been one of the best bdays I ever had.

Friday, April 24, 2009

We need your help

Amy Bush a very dear compassionate friend of my mom and I put together a website to help us stay in our home and she needs your help to make it happen. Since my mother had to quite her full time job as a physical therapist assistant back in August of 2008 to take care of me full-time due to my chair becoming more complicated we have been struggling to make ends meet. We have tried to get a loan modification through our lender countrywide but they refused to help us and they say they would rather have us lose our house. We need donations from generous people like yourself to keep our wonderful home. Visit the website below to donate. Every little bit counts even one dollar. thank you so much for your support!

Mitch Ball

Monday, April 13, 2009

Trach Change successful!

Today I had my first trach tube change since my surjury to open up my stoma back in february. The reason for that surgery was to make the trach changes much easier. Before the surjury trach changes were a living nightmare, the doctor had to pull hard and twist the tube until it ripped out of my neck causing severe pain and bleeding. It literally felt like my throut was being torn out! Today things are much different the surjery did the trick and the tube slid right out with only the mildest of discomfort and only a slight amount of bleeding. I couldn't believe how easy it was, I no longer have to be tortured for what is supposed to be a routine prosedure. Before to today it was anything but routine, I would get so worked up before a Trach change I'd have to take an antianxiety drug Adavan beforehand even with that my hands would sweat and I would feel as if I were going to my execution. Now a mountain the size of Everest has been hoisted off my shoulders. This momentous day has improved the quality of my life imensly and I couldn't be happier.

Sunday, April 12, 2009

vacation planning

For the past four months my mom and I have been planning a trip to Carlsbad California which is just outside of San Diego. About four or five months ago one of Lynelle's puppy raisers Amy approached us with a very generous offer, she offered to let us use her timeshare at a beautiful five star resort in Carlsbad for the week of April 26th. Now this lady is the kindest and most generous of people she has done so much for me and my family, she is truely a rare breed and she gave me a new found faith in humanity that I never had before. There really are wonderful people in this crazy messed up world! Anyway of course I accepted her generous off who wouldn't. If I didn't take it not only would I be passing up the opportunity of a lifetime but I would be letting the timeshare go to waste since Amy was not able to use it at that time which would be a tragic thing being as grand and luxurious as it is. This place has got everything one could possibly imagine and desire in a Olympic size swimming pool, three Jacuzzis,a waterpark, a fully equipped fitness center, Activity Center with video Game Room & Pool Table and much much more! I know I sound like I'm making infomercial lol. This place looks over the ocean of Carlsbad and the beautiful Carlsbad flower Fields so it has quite a view. Although this place has everything one might need we won't be spending our days there we have many many places to see in Carlsbad, nearby San Diego, and Hollywood that's right we're going to Hollywood baby! in Carlsbad we plan on visiting Legoland, the flower fields, and the ocean. In San Diego we are going to the air and space Museum and the magnificent Sea World. And last but not least we are going to Hollywood California to visit the set of the greatest game show on earth the price is right! that's right we are going to try to get on one of the most popular game shows ever created! just last week I called and got tickets for free, now it may sound like it's a sure thing that we get in but they give away far more tickets than seats so we are going to have to get there very early if we want to make it in the door. My mom and I plan to do everything we can to make it on that show. This could be the best trip of my life! as you can probably tell I'm super excited about this trip. this will be the first trip lasting more than one day since I was hospitalized back in August and trached. the ups and downs in my health prevented me from traveling far from home until recently when my health has really improved. Not to say that it will be without risk or burdens. My mom will have to care for me without the support of family, we will be 9 hrs from family and doctors who are familiar with my special needs. Even though it will have it's dangers I can't live my life in fear never venturing far from home, what kind of life would that leave me with? An unfullfilled one not worth living. Sometimes you have to throw caution to the wind and grab life by the horns. That doesn't mean we aren't taking care to make sure the right things are in place to ensure my comfort and safety. We contacted a local respirtory company in Carlsbad so if something goes wrong with my life sastaining equipment there somewhere we can turn to to resolve the problem. We have also contacted a local medical supply company to rent two crucial pieces of equipment that are much too large to fit in my van. We will be renting for the week a Hoyer lift which is used to transfer me from my wheelchair to my bed and vice versa, and a hospital bed. You may be wondering why I don't just use a regular old hotel bed and that's due to the fact that the head and foot can be raised to position me in bed which is crucial to my care as many of my treatments require me to be sitting up. Besides that are van will be crammed with enough medical equipment to run a small hospital, I am definitely not one of those people who can travel light. We need everything but the kitchen sink when we travel there are really too many things to list on my blog it would take up an entire page so I'll let your imagination do the rest sorry. Here are just a few things I'll be bringing; Suction machine, IPV machineand its attachments, cough assist machine, nebulizer and its attachments, extra circuits for my ventilator, ventilator heater, tons of medication, extra pillows for positioning, and much more I won't get into. As you can see we will have our hands full on this trip but I won't let that deter me from having fun issues part of life living with this devastating disease. I won't let it control my life though and I try not to dwell on the negative. This trip will really give me a chance to show this crippling disease whose boss I won't let it control me! under a fight this thing with every ounce of energy have until the day I die. I am truly a fighter.

Saturday, March 28, 2009

Fun In The Sun

It was such a gourgeous day outside we just had to get out and soak it all in. It was brilliantly sunny with no clouds in sight and a high near 80 degrees...ahhhh spring how delightful :) Today my Aunt was visiting (the brown haired one from the pictures on my previous entry) so my mom and I decided it would be the perfect day to show her a beautul little place we love to take Lynelle. This spot I speak of is called Lake Natoma which is a beautul man-made lake (most are man-made in California) about 15 minutes from my house. When we got there I anxioysly ran Lynelle toward the sparling water, I was moving at a pretty good clip when I suddenly went off an invisible raied portion of the sidewalk causing my chair to slam down on the pavement 4 inches belowe. It scared the living daylights out of me but fortuanately I was unhurt and my precious wheelchair was not damaged. After I shook that off We let Lynelle run, swim, and play to her hearts content with a young couples dogs for about 30 minutes. She ran circles aroud those dogs, she is one of the fastest dogs I've ever seen! She's my little greyhound. After thoroughly enjoying seeing Lynelle be a dog we went on a long meandering walk around the lake taking in the scenery, watch the various varieties of water foul, birds of prey, and girls in bikinis ..I...I mean sailboats and kyaks gliding smoothly through the water ;). After we walked we just sat and took in the beautiful surroundings. It was the kind of day that made you happy to be alive. I can't wait to do it all over again.

Sunday, March 22, 2009

Crab feed pics


Tuesday, March 17, 2009

Doctor I need your advice

yesterday entailed another trip to the doctors this time for an examination of my stoma or hole where the trach is incerted to see how it was healing up after the surjury over a month ago. The visit was also to do a trach change which would be the first since the surjury. The doctor had mixed news about my stoma, she noticed it healed fairly well but It also showed signs that my body was rejecting the trach tube. She said since this tube is made out of a different material than the old one my body wasn't used to it yet and was fighting it. she went on to say that eventually my body will adjust and it will just become part of the body and no more rejection will occur, she assured me that this was quite normal and nothing to be alarmed about. Any time you put a foreign object in your body it tries to get rid of it until it realizes that the object isn't so bad. She also noticed some scar tissue called granulation tissue was growing around the trach and she decided to cauterize it with a substance known as silver nitrate. Silver nitrate kills the tissue very gently and eventually just falls off. It does sting a little but it is well worth it to get rid of the tissue which can make trach changes very difficult. After the cauterizing it was time for a trach change only one problem I didn't have my replacement trach! it turns out somehow the item got left at home so the doctor decided since they had no extra tubes to reschedule for a later date in this case April 14th. Not a big deal when it would've been nice to get it over with.

Next we addressed my swallowing issues. We told the doctor that we were eating puréed food that was basically a liquid texture. She acknowledged that there was a significant risks to eating but that was up to us to make the final decision she agreed that it was not reasonable to expect me to eat nothing for the rest of my life and she agreed to do a swallow study. In this case the swallow study was done by inserting a scope with a camera down my nose into my windpipe down to just above my vocal chords. She showed me that there were areas where the food after swallowing was pooling up when it should've been going down into the stomach. This gave me an idea of exactly how risky eating is which is significant but as long as I eat slow and take breaks between bites the risk would be significantly reduce just have to be very careful. the doctor completely ruled out anything other than extreme purée such as a smoothie or a cream soup with note chunks. That made me a little upset but at least I could eat something. I had hoped that I would be a lucky things a little more chunky such as spaghetti or macaroni and cheese but after seeing the video I realized that was not a viable option for me now have to make do with extremely puréed food. There is a risk but it's a risk I'm willing to take for my quality of life.

Sunday, March 15, 2009

The CCI Crab Feast

A crab feast might sound like a very strange place for somebody who is unable to eat to be but that's just where I found myself last night. Ordinarily I would avoid such an event since watching people eat is a little bit of a torturous thing but I wouldn't miss it since all the proceeds go to my favorite organization Canine Companions for Independence the wonderful organization that gave me my precious Lynelle. The yearly crab feast held at the Placer County Fairgrounds in the Roseville California is a massive event where hundreds of people who support the organization gather to celebrate and Dine. Besides a delicious feast of crab and shrimp there was a silent auction, a raffle with amazing prizes, and lots of time to mingle and talk to me others who share your passion for the CCI organization. There were at least 300 people there and many many dogs some of whom were in training others were graduate dogs for people like me. This is my first year attending since this is my first year with Lynelle. I attended the event with my mother and my wonderful aunt whom I adore. Since I was not able to eat I didn't have to pay, I just gave my ticket to my aunt so she could enjoy the meal and I just had a smoothly from Jamba Juice to give me a little something to snack on. I am able to drink liquids afterall. The first thing I did is check out the silent auction. After browsing through the various pieces of art and sports and movie memorabilia I came across a very charming painting of three labradors sitting in a row, one chocolate covered, one yellow lab, and one black and they each had a puppy sitting in front of them of the same color which appear to be the same adult dogs only younger. I looked at the sheet and the starting bid was $175 which is a little steep for my income level but I did anyway assuming that I probably would never win I thought for sure someone would come along and outbid me but guess what it never happened I ended up winning the expensive artwork! Lucky for me my mother stepped in to purchase it for me, I will take her back I promise so don't get the wrong idea. I was stunned but the same time happy that I won the beautiful painting. It will be the perfect edition to my bedroom above my headboard. Between placing my bid and winning at the end of the night alot had happened, some pleasent and some downright disturbing. On the positive side I got to meet a variety of incredibly nice women who knew Lynelle as a puppy, they all had very pleasent things to say about her. Now for the not so pleasent. While waiting with my family for the crab meal I had to go to the bathroom. Now you gotta be thinking what's the big deal about that? Ordinarily nothing for the average person but wen your disabled it's a whole different ballgame. When I'm out and about with my Dad it's no problemo as long as theres an accessible bathroom we just cruise into the mens room and he helps me do my buisness. This time hovever I was with my mom so simply cruising into the mens room insn't a viable option. What we do in this situation is have a man go into the restroom to make sure it's empty then we have someone in this case my aunt to guard the door and politly ask any patrons to wait for us to finish our buisness. This usually works fine as people are usually very understanding. This time however my aunt was confronted by an extremely beligerant man who wanted to have none of what was going on. As my mom and I were finishing up we heard yelling coming from outside. The mn was going on and on yelling "WHOEVER IS IN THERE BETTER GET THE HELL OUT!!" "I HAVE A BLADDER PROBLEM" "YOU CAN'T CLOSE DOWN THE ****** BATHROOM!" as we left the restroom my aunt told him "Don't you feel ashamed of yourself?" and the crazed man replied "NO I DON'T" "I HAVE A BLADDER PROBLEM PROBABLY WORSE THAN HIS" I was livid and above all horrified, it took everything I had to bite my tongue all I said was "there's no need to get upset" then I just drove by and left the man standing there like the ignorant fool he was. In all of my life I never experienced such hostility and I'm left stunned. I could have easily let the encounter ruin my night but I refused to let it. I went on mingling while sipping my delicous mango smoothy which really took my mind off the delicious delicacies being devoured around me. After the meal it was time for the highly anticipated raffle. I didn't win but my aunt did she won a $40 fire/watertight safe. After the raffle it was announced that the silent auction was over so I rushed over to the table where I placed the bid and saw only my name. I had won the auction! That was the end of a mosly funfilled evening. I look forward to doing it all over again next March. Aside from any please excuse my language a**holes. Thanks for reading Mitch Ball's World

Sunday, March 8, 2009

Snow Day

Yesterday was another fun filled action packed day in a glistening snow covered landscape. This time however it wasn't just myself, my mom, and Lynelle having all the fun, we were accompanied by at least 50 people and just as many dogs at a Houston in Truckee California for an event known as snow day. This is an event that takes place every March at a house owned by a couple who are CCI (Canine companions for Independence) puppy raisers and breeders. Every year they invite puppy raisers, CCI graduates like myself, breeders, and their canines to their amazing wheelchair accessible home for a day of food fun and conversation. They have a large fenced in back yard where all the dogs can run and play together to their hearts content and I spend hours watching them play with my beautiful Lynelle. There is something very magical about the way they play that captures my imagination and I can be engrossed for hours just watching them run around like the carefree animals that they are. I met very nice people and had a wonderful time soaking up the sun and taking in the sights. I can't explain how amazing it is to watch dogs in their natural environment, it's like they know how to have a better time than humans ever could.we can really learn something by watching them.

Sunday, March 1, 2009

without a hitch

Friday's procedure which I outlined in my previous post I am happy to reportwent off without a hitch. It was far quicker and easier than I ever imagined it would be, I have had anxiety about this for months and it turns out my anxiety was unfounded. The simple procedure started with the nurse giving me a small dose of very powerful drug Versed which alters your consciousness and makes pain much less severe. Getting the medicine into me however was a little bit of a challenge. Once again I needed an IV which for me is not a simple task as my veins are very hard to see and are very tiny so it took three tries to finally get the medicine flowing. Once I was in a medicated blissful state they numbed my throat with a disgusting tasting spray that smells like bananas of all things to make the insertion of the scope more comfortable, they also put a mouthpiece in to help guide the long snakelike camera. I have to admit it wasn't the most comfortable thing in the world but I've had far worse done to me without medication. Next the scope was slid into my stomach and on the monitor set up next to the gurney I could see the image of my stomach on the screen, it was far cleaner looking and empty than I thought. No fluid or anything just a nice pink chamber with glistening walls. After they maneuvered the scope in my stomach I was able to see the mushroom or rubber stopper that was holding the stomach tube in place. Since the stopper appeared small enough the doctor decided just to yank it out after all, 1...2...3 bam! that tube was gone all I felt was a slight stinging sensation at the site which only lasted a split second. I was shocked and relieved at how easy it was I was all worked up in my mind that this is going to be some horrible experience that turned out to be nothing more than a mosquito bite. After the tube was removed they inserted the new tube and it was all over. what a huge feeling of relief I felt when it was all said and done it's a feeling I really can't describe. after the drug wore off they got me back up in my chair and away I went home feeling like I could conquer the world.

Wednesday, February 25, 2009

I'm back!

Sorry it has been so long since I last posted I've been a bad blogger recently. The reason for this is there really hasn't been all that much to report my life has been pretty uneventful lately and that is a good thing. My health has finally stabilized after all those months and I feel better than ever ready to take on the world, okay maybe not that good but it is a lot better than I have felt along time. that's not to say there isn't anything medical going on right now. Last Friday I had an appointment at gastroenterology at UC Davis Hospital to have my feeding tube replaced, this is usually a very routine procedure that is done every three months or so to keep the tract going into my stomach healthy and clean. Usually it is pulled straight out after a special balloon holding it in place as deflated bur, I do not have a tube with a balloon I have an old-fashioned kind with a simple rubber stopper at the end so it cannot be simply pulled out like the other tube without causing severe damage to the tract and tremendous pain. In my case the doctor decided putting a scope down my throat into my stomach to remove the rubber stopper would be the best way to take it out with minimal discomfort. Last Friday I was all set to have my tube replaced but since the doctor discovered I had a different type of tube as I described it had to be put off until this Friday so they could get everything ready for the procedure. I will be sedated with a drug called versed so it won't be at all uncomfortable and I should have no recollection of what happened. This really is a routine procedure that should not cause any damage that needs to heal and I will not have to stay in the hospital after the procedure I can go home the same day which is a big relief to me because I hate hospitals! this is just a minor bump in the road that I have to get over and move on, It's just part of the life of living with muscular dystrophy, I can expect many more procedures in my lifetime and I just have to deal with them as they come. Thanks for reading it really brings me joy to know that people actually care about my little life. I never thought I would have as big of a following as I do, I even have movie producers for IMAX commenting me, what a small and wonderful world!

Wednesday, February 18, 2009

I went deep sea diving

Or at least that's what my mind, eyes, and ears had me believing monday as I sat in front of the monsterous screen at the Sacramento Esquire IMAX theater. Monday was a blistery, windy, wet, and cold day so I decided to spend my afternoon catching a 3D movie at the IMAX. I decided to see two movies that day since the movies were only 45 minutes each, I saw Under The Sea 3D and Deep Sea 3D. As you probably already know I'm a big nature freak and love anything to do with the beautiful creatures of this planet so these sea life documentaries were the perfect fit for me. You may be thinking booooooooorrrrring but you'd be gravely mistaken as these documentaries put you right in the action in glorious 3D...It literally feels like you can reach out and touch the magnificant creatures as they appear to swim right into your lap! It really is a surreal experience that you have to see to believe. Thanks to technology even someone as disabled as me can go diving.

Friday, February 13, 2009

Lynelle having fun with her buddies

Here are a few pictures of Linnell having fun with her best friends jersey and windy about a month ago. They belong to the women who raised her from a puppy. Lynelle is the one with the red collar in case you were wondering.

Monday, February 9, 2009

Snow Day

This afternoon my trusty sidekick Lynelle and I took yet another impromptu trip to the snow. The night before there had been low snow falling all over the foothills and Sierra and it was a winter wonderland up there with trees weighed down with snow as far as the eye could see. It was one of the most beautiful sights I have ever seen I had never seen so much snow in my entire life! Yes I know I'm crazy about snow, when I see snow in brings up the little boy in me and I get giddy as a schoolgirl lol. This time we had to drive just an hour to see snow which ended up being just above Apple Hill which is about 50 minutes from our house. We ended up at campground called sly park. There we stopped at a beautiful lake surrounded by snow covered trees with the beautiful sunset coming down. We let Lynelle run around a bit and she just went hog wild running around like a greyhound I've never seen her move so fast, where she gets the energy I do not know because at home she lays around most of the day snoring. As soon as she saw that snow she perked right up! I've never seen a dog that loves snow as much as her. It was truly a wonderful day that I will not soon forget. Below are some pictures capturing the joyous event. Enjoy!


Yesterday was an interesting day. I went bowling with my disabled teen ministry Walk On Water or WOW. I know you must be thinking "how does someone with hardly any use of their arms bowl?" well it's actually pretty simple the bowling alley has a special ramp made of wood that you can place the ball on and have someone roll it down once it is pushed into position by the person in the wheelchair by gently nudging it until lying to with the pins you want to my case I did pretty well considering that the ramps can be pretty inaccurate. It may be challenging but it is a lot of fun, anything is possible if you put your mind to it and things that seem impossible become possible when you've put yourself out there and try.

Friday, February 6, 2009


My surgery today was a huge success, it went better than I could have ever imagined and I am thrilled. It only lasted about 15 minutes instead of the estimated hour and a half and afterwords I felt no pain at all! this is how it went down. I was rudely awoken at the ungodly hour of 6:30 AM and I arrived at the hospital at 9 AM to check in and get everything settled. Around 11:30a.m. I was brought up from the preop station to the OR waiting area where I was transferred from my wheelchair to a bed, given an IV for the anesthesia which let me tell you wasn't easy, you see I am a very hard stick and it always takes several attempts before getting a good line. That was the worst part of the whole surgery was getting that darn I V. I swear it took longer to get an IV in than the whole surgery itself! Around 12:30pm or so I was wheeled into the OR where they gave me an awesome drug that made me feel like I was in seventh heaven floating on air it was really good stuff! During the surgery I was completely unaware of what was happening to me although my eyes were open and I was semi-aware of where I was but I was so out of it that can barely remember what happened. The surgery was over in what seemed like a heartbeat and no problems occurred. What a big success I was worried for nothing!

Thursday, February 5, 2009

surgery tomorrow

Hi everyone Mitch here how are you all doing? That's right tomorrow I'm having surgery, brain surgery just kidding it's nothing as dramatic as that is just a simple surgery where a little bit of scar tissue will be removed from my stoma or hole in my throat where the trach is inserted. this is a very routine surgery and the risks are extremely minimal so I really have nothing to be nervous about. surgery is surgery however so I do have the normal butterfly sensation in my stomach about it. I will only be hospitalized for one day and I will be back on my wheels in no time.

Today I'm just relaxing and enjoying my time out of the hospital, I'm catching up with friends, surfing the web, and is trying not to think about tomorrow.

Monday, February 2, 2009

say your prayers!

Yesterday was quite the exciting day for me, I had to say a prayer in front of my entire church congregation. I have never been one to get up in front of people and talk, in school I used to hate getting those oral reports and presentations and I would get so nervous that I would make myself sick. These days things are a little bit different for me I have more confidence in myself and public speaking is not nearly as nerve-racking as it was back then. It still isn't easy however but this was an opportunity I couldn't miss, stepping out of my comfort zone and talking to all those people was a real opportunity for me to grow as a person. It's how I got into this was a disabled youth ministry that I am a team leader of put on the service which was about disabilities and why God allows bad things can happen. I was confront confronted by the leader of the group to do the prayer. At first I was reluctant but he reassured me that things would go okay and that I definitely could do it and that this was a way for me to grow in my relationship with Christ. So yesterday I did just that. Another leader of the group held the microphone and I began to pray. It was a very powerful experience and it made me feel closer to God than I have been in a while. I know God chose me for this for a reason that reason being getting closer to my loving God. I thank God and the prayer for the wonderful group that touches so many lives and gives hope to many disabled children and young adults.

This group I am part of is called walk on water or WOW for short. It is a ministry for children and teens with disabilities to get together and play games, sports, eat snacks and most importantly make long-lasting meaningful relationships with the leaders and other kids that make them feel accepted and important. WOW is a place where they will not be judged for their disability and they can feel like normal kids which is something that doesn't happen in very many places for them. I feel very privileged to be a part of this ministry, nothing makes me happier than the smile on the kids faces and the love I feel from all the wonderful volunteers that make this group possible. It has brought me closer to God than I have ever been and I am forever thankful to him for bringing this group into my life. Helping start that group was one of the best things I've ever done and it makes me feel very proud that I can make so many lives better.

Tuesday, January 27, 2009

I was driving!

Or at least that's what my mind believed as I lay in a deep slumber last night. I had the truly bizarre yet very positive dream, I was doing what I have wanted to deal my whole life that was an American right of passage, driving an automobile! This is something that can only exist in my dreams however since the cost of modifying a vehicle for someone with my level of immobility is astronomical, I don't have to be a millionaire can afford it or at least fairly wealthy. In my dream however this was not problem since I won a very large sum of money by simply shopping. I was at some sort of store where in order to win a large sum of money one simply had to buy a bunch of toys, how easy is that! After winning the money I found myself at a car dealership specializing in vehicles modified for the disabled, I found myself drooling over a shiny new P T Cruiser cutting convertable set up for someone like me to be able to drive. It had a lowered floor, electric ramp that folded up, the drivers seat removed so I could drive my wheelchair into it's place, and instead of a steering wheel there was a control panel with buttons to go forward turn left and right and reverse. With the money I purchased the amazing vehicle and I was on my way cruising down the road! It took me a little getting used tobut once I got the hang of it I was like Mario Andretti passing everyone on the streets and leaving them tiddly inhale my exhaust. It was one of the coolest dreams I've ever had and I felt that it was worth sharing.

Sunday, January 25, 2009

Another hospital stay :(

Yes that's right I had yet another stay in the hellish hospital. Just when I thought I was out of the woods I was sucked back in by another set of medical problems. This time one of those problems was completely unexpected. I developed something called a pneumothorax, you must be asking yourself what the heck is that well I'm going to try to explain the best I can. A pneumothorax is a hole in the lungs that allows air to escape into the area between the lung and the chest wall, these can be very serious and can lead to the collapsing of a lung. Luckily for me it was a very small one and I felt no pain, and of course my lung did not collapse praise the Lord! What they do as a treatment for this is stop all of my respiratory treatments which can be the cause of the increased pressure at causes in the lung, they also give the patient 100% oxygen for 24 hours, and in severe cases insert a chest tube to drain the escaped air. For me the 100% oxygen and a lack of respiratory treatments worked wonders and it cleared up within a few days. My other medical problem was the fact that my pneumonia that I was being treated for at-home had gotten worse since the week before. it had gotten to the point where it was causing me physical pain in my chest and causing my oxygen saturation to decrease. What they decided to do this is for me on a new type of antibiotic, through chests in a lab may determine that might pneumonia was most susceptible to this wonder drug. I am home now and doing quite well, the pain has subsided in my chest, my secretions have dried up to a point, and my pneumothorax is almost completely gone. It was a relatively short stay in the hospital but it sure didn't feel that way, due to the lack of activity you become very bored and that makes the time go by very slowly. It was not a fun time but I took in stride and try to think positively, that's all you can do in this situation is ride it out and hope for the best. My life may seem like hell to an ordinary person but when you're faced with this type of thing on a regular basis it becomes routine and relatively benign. It still gets to me once in a while because I'm human but I do my best to overcome the challenges I am faced with. thanks for reading my blog it really means a lot to me that I can reach out to others who face similar challenges and I can teach those with relatively easy lives but life with a disability is all about. It's all about surviving and thriving and getting stronger with each new challenge and not letting your disability define who you are as a person. It is very easy to make your life all about her disability and to become bitter and withdrawal from the world but it is not healthy and you will be miserable if you live that way. The key is to look on the bright side and focus on the things you can do rather than what you cannot. It also doesn't hurt to have faith in the Lord for he heals all pain. Thank you and God bless everyone!


Saturday, January 17, 2009

we want food!

Way back in August which feels like an eternity now I had my tracheotomy after choking on a bagel, causing me to develop severe pneumonia. the reason I choked was the muscles in my throat responsible for my swallowing are very weak from my disease. Back then it was determined that eating solid food was no longer an option for me. choking was too high a risk and that was a gamble I was not willing to take so I stuck to the puréed diet for the next several months. the food I was able to eat was fairly limited but I made do, I was able to eat things such as ice cream, cream or tomato soup, re fried beans, finely chopped overcooked spaghetti, and my favorite overcooked macaroni and cheese. Overcooking those last two dishes was to make them soft and easy to purée. It wasn't fun not being able to eat a juicy burger or a T-bone steak but at least I could enjoy some food.That was until December 20th when I was hospitalized for my second bout of pneumonia. The doctors determined that the cause for my pneumonia was aspiration caused by eating and drinking so they decided I should not eat anything at all which was a huge disappointment for me. I was denied one of the greatest pleasures in my life and I was devastated. Now I live food free and it's one of the hardest things I've ever had to do, almost every night I dream about food and in the day I'm tormented by a food imagery in the media. It seems like every time I turn on the TV I am haunted by images of mouthwatering entrées. This is by far the hardest thing I've had to give up besides giving up walking. I never realized how much food was a part of my life until I was denied, now I see what a big part of my life it really was and how much it meant to me. In case you're wondering how I survived without food I get all of my nutrition in liquid form for a feeding tube that goes directly into my stomach. I guess five cans of liquid nutrition a day and that's what keeps me alive. I have been thinking of taking the risk and eating puréed food again but then again I might end up in the hospital once again with pneumonia which is something I'll do anything to avoid.

Snow day

Yesterday's impromptu trip up to the mountains to see snow was a big success! The reason I say impromptu is there was with hardly any planning, we just decided to go on a whim. Sometimes it's nice to do things on the spur of the moment and let caution fly to the wind and that's exactly what we did. After a pleasant and relaxing 70 mile drive we arrived at soda Springs ski resort where we stopped at a lodge overlooking a frozen lake, the sheer beauty was unbelievable I felt like I was in a postcard! We let Lynelle run and play to her hearts content in the frozen landscape. I've never seen Lynelle so excited in my life as when she saw the snow, she proceeded to frolic and prance around like a puppy. After a while of playing solo a young woman who lives in the area brought her eight-month-old puppy and we let them play. They chase each other for what seemed like forever eventually they got out of sight and my panic stricken mom and young woman had to chase them down. I can't believe how much energy Lynelle had that day and how much she loves snow. Once the sun started to go down we went to a rustic restaurant bar where we enjoyed a hearty meal before we headed back down the hill in calm darkness. the only negative was the trip was Lynelle injured her paths on the hardpacked sharp ice like snow. It hasn't snowed up there for a couple weeks in the snow hardened. Her pads are red and sore from the rough surface and I feel terrible the poor baby! dogs heal quickly so I'm not too worried she'll be back to her old self very shortly. All in all it was a very nice trip and I can't wait to do it again only next time it will be after a snowstorm when the snow is nice and soft and fresh.

Friday, January 16, 2009

head for the hills!

That's exactly what I'm doing today in about 15 minutes. I'm packing my equipmentthen heading up to the breathtaking Sierra Mountains to see the snow. You see in Sacramento Snow is a very rare sight so it's worth the Long drive to see the white stuff. It's been a couple years since I have seen the snow so this will be a rare treat! I will try to find a place to let Lynelle run in the snow. Stay tuned to see how this little adventure turns out.

Tuesday, January 13, 2009

a beautiful day in the neighborhood

Today was truly a beautiful sunny California today without a cloud in the sky. Temps were in the mid- 60s, children were playing, birds were singing, and dogs were barking... It seems that everyone was enjoying this day the same as me. Having just left the hospital this was truly uplifting and made it feel wonderful to be alive! My mom and I, mom on bike me in chair took my gorgeous girl Lynelle for a long-run around the neighborhood. We stopped in the middle to feed a stunning champagne colored horse carrots, the steed thoroughly enjoyed it and gave my mom some affection. What a day! Now I'm going to watch a movie with my family then relax in my bed to watch a little TV, the perfect end to this wonderful day.

Monday, January 12, 2009

where have I been?

In case you're wondering where I've been for the past three days I was in the hospital for the second time in the last month with pneumonia. don't worry I'll be fine this is a very common thing for someone with Duchenne's. Due to our very weak muscles in our chests we are unable to adequately cough up stuff in our lungs and things settle her along and we get sick. Lucky for me it was caught rarely and with antibiotics I'm back on my feet so to speak. It certainly wasn't fun but have nothing to do but move on with my life and hope and pray my health holds out. The reason I got pneumonia twice in one month is my antibiotics were stopped too early and the pneumoniae came back. Back in August I choked on a bagel and ended up getting severe pneumonia that almost took my life, that is when I was trait to help my severely weakened lungs fill with air once again. I was in the hospital for two months then it took everything I had to get through it. Hospitals are a part of life for someone with Duchenne and we just have to live with it. like they say, what doesn't kill you makes you stronger and I definitely feel that it's true. Those two months in the hospital changed me forever, before I was an angry, negative, and downright mean person but now I am filled with compassion and I look on the positive side. Coming near death will do that to you! In a way I am thankful for those two months I am much happier with myself and life in general, it's a miracle how I've changed!

Thursday, January 8, 2009

Marley and Me.

today I saw the most amazing dog movie I have never seen. It made me laugh, made me cry, and gave me a deeper appreciation for my loyal companion. I recommend anyone that has the slightest interest in dogs could see it if you can handle the sad and believe me it is sad but that's part of life, it can be all smiles and sunshine all the time after all. I can't wait to read the book!

Wednesday, January 7, 2009

A busy day!

Today I had a preop appointment since I'm going under the knife on January 6 for a small procedure. Today they read me the risks which were minimal, made me fill out a ridiculously long survey on the health, and walked me through the procedure. The procedure is the removal of scar tissue around my stoma, a stoma is a small hole in my trachea in which a tracheostomy tube is inserted onto which my ventilator is connected. The procedure involves using a scalpel and acauterization tool to remove the excess tissue which makes changing my trach tube very difficult. Trach tubes are usually are changed every two weeks to avoid it being permanently embedded in my throat and to avoid infection from a dirty trach tube. They will put me under light anesthesia for the procedure which will take about an hour and a half or so. There is very little risk this surgery and I will only be in the hospital overnight.

Another thing I did today was pick up my new cushion from my local wheelchair shop. The old cushion I have was causing me severe pain on my buttocks so I had to go. I opted for a Roho cushion which is a cushion made up of dozens of small compartments that are filled with air and can be adjusted to fit anyone. I'll be sitting on error when I try it out tomorrow. Hopefully this will end the pain in my butt.

Well that's it for today thanks for reading.

Tuesday, January 6, 2009

How I feel about Lynelle

In no way shape or form is Lynelle just a dog! Click the picture for a larger view.

Monday, January 5, 2009


My beautiful canine friend Lynellemay look like your typical yellow Labrador but she is anything but typical. She can't fly, she can't leap tall buildings at single bound, she doesn't wear tight fitting spandex, and bullets will not bounce off her but she is a super dog. She is what is known as a canine companion or service dog, a canine companion is a dog that helps disabled people be more independent in their daily life. She is very specially trained in over 40 commands, she can open doors, open drawers, pick up items that I drop and deliver them to my lack, get a cold drink out of the refrigerator if I choose to train her to do so, bark on command and much much more. Try to get your dog to do that! I got Lynelle completely free of charge from a nonprofit organization known as Canine Companions for independent or CCI, there they trained her in all that she knows. I had to go to their facilityin Santa Rosa California for a two-week training coursethat taught me how to handle Lynelle and all her commands. I had Lynelle since May of 2008 but it feels like a lifetime, it's hard for me to remember life without my trustworthyand loving friend. Words cannot express how much she has changed my life. She has given me Independence and I can only dream of before and she is the best friend anyone could ask for. I love her as far my family and I am forever grateful to her for her loving service. I recommend anyone with a physical disabilityto get a canine companion, it's a lot of work he worked in the end. For more information go to

Sunday, January 4, 2009

welcome to my blog!

This is my first post and first blog so bear with me, I'm not sure how all this stuff works but I'm figuring it out. I am going to use this post to tell you a little bit about the things I love in life.

The number one thing in my life is my family and that will never change. They are a wonderful support system for me and I don't know how I could live my life without them. I live at home with my younger brother Brett (19), my amazing mother Heidi (50), and my beautiful canine companion Lynelle. a close second are my friends many of whom share the same disease I do, they always offer me great advice and help me see the positive side of life and disability. another huge thing in my life is m amazing Lord and Savior Jesus Christ, without him nothing else would matter. He is my pillar of strength and is what has kept me going all these years. Life isn't worth living without God! lastly I love the amazing technology that makes my life bearable mainly my power wheelchair that gives me mobility and independence. I am so glad I was born in the 20th century! My second favorite piece of equipment is my ventilator that is small and portable enough to take with me on the back of my wheelchair. not too long ago people on ventilators were bedridden for life. thanks to technology I'm up and running or rolling in this case.