Neck Brace

The pictures above are of me when I wore my neck brace. These were taken about eight or nine months after my accident, when I was 16 years old. After getting my halo removed in February of 2003, I was ordered to wear this neck brace until I was fully healed. I remember not liking it very much, although it was a lot better than having metal screwed into my skull. After wearing this brace for a few months I switched to a soft collared brace. That one was even worse, and I mostly only wore it when I had a doctors appointment.

Jenni

Fire Rainbow

"This is a fire rainbow. The rarest of all naturally occurring atmospheric phenomena. The picture was captured on the Idaho/Washington border. The event lasted about one hour. Clouds have to be cirrus, at least 20,000 feet in the air, with just the right amount of ice crystals and the Sun has to hit the clouds at precisely 58°F."

I thought this picture was amazing; to know that this phenomenon can only occur at specific elements. I guess that's true with a lot of naturally occurring things and events, but supposedly this is the rarest. I can see why.

Jenni

Snowed In

Merry Christmas everyone! The picture above is of our backyard and deck. This is the amount of snow we've gotten so far. I've had a great Christmas. We have celebrated four times in the last two days with family and more to come this weekend. Some people couldn't make it because of the snow. Hope everyone else has had a good holiday season. Looking forward to the new year.

Jenni

"Wherever you go, whatever you do, may the joy of the season always be with you."
-Anonymous

White Christmas

We're definitely going to have a white Christmas in Minnesota this year. There is a winter storm warning out tonight. I think by Saturday were supposed to get close to 20 inches of snow. One thing that concerns me during times like these is a nurse not being able to show up due to the weather. It's happened before and I'm hoping that it won't happen again, especially during the holidays.

I will definitely be hibernating in my house for the next few days. It's hard to go out in the snow. Sometimes my wheelchair gets stuck if it's not shoveled. Maybe I should just get chains on my wheelchair, like my grandpa Rich suggested. Then I'll be ready for anything. Or I could hook a shovel to the front and plow my way through.

Jenni

Time to Relax

I'm so relieved. Classes are now over for the semester and I am officially on winter break. Finals were tough and took a lot of time and effort, but I got through them. I received an "A" in both of my classes. Looks like all that hard work paid off! Now I can enjoy the holidays and relax. I promise I'll be blogging a lot more now that I have some free time.

Jenni

Finals Week/Spring Semester

I'm just finishing finals for my classes this week. I have a final skills test due today for my communications class and my final portfolio for my creative writing class due on Monday morning. I'm done with my first final; just working on the other one. I'm hoping to get it done by Friday so that I don't have to be stressed about it over the weekend.

I had mentioned in an earlier post that for spring semester I signed up for psychology of spirituality and religion and two online classes, but I hadn't decided which one to take yet. I decided to take the Mass communications class instead of the creative writing nonfiction/memoir class. Eventually I will take the writing class because I love to write and hope to someday write a book, but I think I need a little break from writing creatively. Don't worry, that doesn't include my blog.

Jenni

Cute Poem

Little drops of water, little grains of sand
Make the mighty ocean, and the pleasantly land:
So the little minutes, humble though they be,
Make the mighty ages of eternity.
Little deeds of kindness, little words of love,
Help to make earth happy, like Heaven up above.
-Julia Carney

Questions Answered

Ryan said...

I'm kind of curious about some stuff. You mentioned before that you used to be able to breathe off of the vent for like 45 minutes, but now it's down to less (10 minutes, maybe?) And also I know you're incomplete and that you can actually move your arm(s) (saw the video), can feel, and can move your fingers and toes.

I'm not sure if you can move your head, though, or what else you can do completely. BUT, I was wondering, why did you stop practicing breathing on your own? How often do you try to move your arms and fingers and toes? What else can you do and how much do you do it?

Matthew said...

I would be interested to read Jenni's answer to Ryan's above post, but I would like to point out to him that if he read again the posts in which Jenni describes her movement and feeling, but I did notice that it was not complete and that she could move her arm into a position but not back again, etc.

Jenni, does your "neck breathing" have to be conscious? Most of us don't breathe consciously, after all; our body breathes without our having to do it, much as it does so much else. If you can't, it may answer Ryan's question as to why you don't do it more or all the time.

Ryan and Matt,

First, I'm going to answer the questions about breathing. What I do to breathe is actually called neck breathing. It's not like just taking a breath; my lungs and diaphragm don't work like they should. I use my neck muscles to pull air in through my trach into my lungs. The breaths are very small, so I have to take about 40 breaths a minute versus the 18 my vent gives me. In answer to Matt's question: yes, it is all conscious. In other words, voluntary.

I used to practice once every day, and after a couple of months I got up to about 15-20 minutes at a time. However, Neck breathing is extremely exhausting and straining. It takes a lot of time and energy to practice. I do neck breathe now for a few minutes each day while changing my shirt, but not to the extent that I used to. It would be great to be able to breathe on my own. Hopefully I will be able to start practicing to breathe with my physical therapist soon.

In answer to the question about moving. I work hard to get as much movement as possible back. I'm not able to just lift my arms up. It takes a lot of focus and strength. In order to bend my elbow, I have to know which muscles to tighten. Then I have to think about it as I do it. There is one main thing that prevents me from moving more: my spasticity and tone. My muscles are extremely tight. As Matt said, I am unable to straighten my arms once I have bent them. If someone straightens my arm for me, I can bend it again, but only a few times in a row before I get too tired. I am able to move my fingers, toes and wrists easier and without as much thought as my arms and legs. I'm constantly trying to move things everyday, whether they move or not.

I know this all may sound very confusing. Spinal cord injuries often are. If you have anymore questions feel free to ask them.

Jenni

Oh Christmas Tree...

We got a Christmas tree last week. It's about 9 feet tall and extremely full. My mom just got done decorating it on Sunday. She wrapped gold ribbon and white lights around it. She also hung glass balls on it. Well, something happened early Monday morning at about 3 AM. My nurse heard a huge crash upstairs. Turns out, Toby, one of my cats knocked the whole Christmas tree over. He must've been trying to climb it or something. Water went everywhere along with hundreds of pine needles. He broke eight bulbs and the tree stand. Needless to say, it was a mess. My mom cleaned it all up, bought a new tree stand, and re-decorated the tree.

All day Monday he was crouching down like he knew he did something wrong. He wouldn't even go upstairs because he was so scared. On Tuesday, I brought him upstairs in the elevator on my lap to try to help him get over his fears. Kitty therapy I called it. After I sat there for a while he jumped off my lap and started scoping things out. I think I cured him. He's not scared anymore! The bad thing is now he won't stop hanging around the tree. My mom's not very happy about my therapy session.

Jenni

The Brick

I received this story in an e-mail. Thought it was worth sharing:

A young and successful executive was traveling down a neighborhood street, going a bit too fast in his new Jaguar. He was watching for kids darting out from between parked cars and slowed down when he thought he saw something.

As his car passed, no children appeared. Instead, a brick smashed into the Jag's side door! He slammed on the brakes and backed the Jag back to the spot where the brick had been thrown.

The angry driver then jumped out of the car, grabbed the nearest kid and pushed him up against a parked car shouting,

'What was that all about and who are you? Just what the heck are you doing? That's a new car and that brick you threw is going to cost a lot of money. Why did you do it?' The young boy was apologetic. 'Please, mister...please, I'm sorry but I didn't know what else to do,' He pleaded. 'I threw the brick because no one else would stop...' With tears dripping down his face and off his chin, the youth pointed to a spot just around a parked car. 'It's my brother, 'he said 'He rolled off the curb and fell out of his wheelchair and I can't lift him up.'

Now sobbing, the boy asked the stunned executive, 'Would you please help me get him back into his wheelchair? He's hurt and he's too heavy for me.'

Moved beyond words, the driver tried to swallow the rapidly swelling lump in his throat.. He hurriedly lifted the handicapped boy back into the wheelchair, then took out a linen handkerchief and dabbed at the fresh scrapes and cuts. A quick look told him everything was going to be okay. 'Thank you and may God bless you,' the grateful child told the stranger. Too shook up for words, the man simply watched the boy! push his wheelchair-bound brother down the sidewalk toward their home..

It was a long, slow walk back to the Jaguar. The damage was very noticeable, but the driver never bothered to repair the dented side door. He kept the dent there to remind him of this message: 'Don't go through life so fast that someone has to throw a brick at you to get your attention!' God whispers in our souls and speaks to our hearts. Sometimes when we don't have time to listen, He has to throw a brick at us. It's our choice to listen or not.

Thought for the Day:

If God had a refrigerator, your picture would be on it.

If He had a wallet, your photo would be in it.

He sends you flowers every spring.

He sends you a sunrise every morning Face it, friend - He is crazy about you!

God didn't promise days without pain, laughter without sorrow, sun without rain, but He did promise strength for the day, comfort for the tears, and light for the way.

Read this line very slowly and let it sink in...

If God brings you to it, He will bring you through it.

Jenni

Being Alone

I have 24/7 nursing care because of my trach and ventilator. If my injury was any lower, I wouldn't have nurses. Sometimes I'm glad that I'm on the ventilator so that I can have nurses to do all the care that comes along with being a quadriplegic. I don't think I would be as healthy or come as far as I have without nurses. On the downside, I'm never alone. This is one thing that I struggle with. Even if I'm alone in my room, there is always someone within hearing distance of me in case something happens. Sometimes I get frustrated with always having someone by my side, constantly talking and doing stuff for me. It is hard to always think of the positive side to having nurses and people around me. I would never want to not have nurses just for the sake of being alone in the chance that my tubes were to pop off and I wouldn't be able to breathe and put them back together. It's just a feeling that I wanted to share.

Jenni

Quote for the Day

"I will act now. I will act now. I will act now. Henceforth, I will repeat these words, each hour, each day, every day, until the words become as much a habit as my breathing, and the action which follows becomes as instinctive as the blinking of my eyelids. With these words I can condition my mind to perform every action necessary for my success. I will act now. I will repeat these words again and again and again. I will walk where failures fear to walk. I will work when failures seek rest. I will act now for now is all I have. Tomorrow is the day reserved for the labor of the lazy. I am not lazy. Tomorrow is the day when the failure will succeed. I am not a failure. I will act now. Success will not wait. If I delay, success will become wed to another and lost to me forever. This is the time. This is the place. I am the person."
-Og Mandino

Classes

The picture above is of me on Thanksgiving. We had 18 people here and ate turkey, mashed potatoes, rutabagas, green bean casserole, croissants etc. It was delicious!

I signed up for classes for next semester. I am taking Psychology of spirituality and religion at Normandale. I also signed up for two online classes but I'm not sure which one I'm going take yet. Once I figure it out I'll drop one of them. They are mass communications and creative writing nonfiction.

Jenni

Happy Thanksgiving

"Almost 400 years ago the Pilgrims held a celebration feast to thank You, God, for the blessings in food You provided them. Their heartfelt thanks were genuine and sincere as they clearly understood survival thru the bitter New England was totally dependent on Your Grace. Lord, help us to remember today is no different. While we have warmth and shelter and plenty of food, help us to remember that we also live in Your Time according to Your Plan.

Regardless of our situation, no matter if we are battling disease and illness, or suffering the loss of a loved one, or faced with under-employment and economic distress, or other problems in our lives, we all have many things for which to be grateful. Thank you God for this day we can celebrate with family and friends. Thank you for the simple pleasures-the joys of preparation and cooking, the smiles and laughter, good times remembered, and the bond of faith, family and friends. Thank you for Your continued blessings. Amen."
-Jim West

The other day I received a card with this message inside. Everything in it is so true and genuine. I know that not everyone who is reading this lives in a place where they have a Thanksgiving, but I can guarantee that most people have something that they are thankful for. I am thankful for good health, my life, family, and friends. What are you thankful for?

Jenni

Trapped

The picture above is Rom Houbon, 46, who was diagnosed as being in a vegetable state after an accident in his 20s but can now communicate by computer keyboard. The article below tells his story. I found it on the Internet and thought it was interesting. I couldn't even imagine. Some people look at my situation and say the same thing. I just think about the fact that my situation could be worse, and that there are other people out there who are facing bigger challenges and bigger struggles. It makes me feel grateful for what I've been given-life. If you'd like to visit the actual website where the article is from click here.

Trapped in His Own Body for 23 Years-the Coma Victim Who Screamed Unheard

For 23 years Rom Houben was ­imprisoned in his own body. He saw his doctors and nurses as they visited him during their daily rounds; he listened to the conversations of his carers; he heard his mother deliver the news to him that his father had died. But he could do nothing. He was unable to communicate with his doctors or family. He could not move his head or weep, he could only listen.

Doctors presumed he was in a vegetative state following a near-fatal car crash in 1983. They believed he could feel nothing and hear nothing. For 23 years.

Then a neurologist, Steven Laureys, who decided to take a radical look at the state of diagnosed coma patients, released him from his torture. Using a state-of-the-art scanning system, Laureys found to his amazement that his brain was functioning almost normally.

"I had dreamed myself away," said Houben, now 46, whose real "state" was discovered three years ago, according to a report in the German magazine Der Spiegel this week.

Laureys, a neurologist at the ­University of Liege in Belgium, published a study in BMC Neurology earlier this year saying Houben could be one of many cases of falsely diagnosed comas around the world. He discovered that although Houben was completely paralysed, he was also completely conscious — it was just that he was unable to communicate the fact.

Houben now communicates with one finger and a special touchscreen on his wheelchair – he has developed some movement with the help of intense physiotherapy over the last three years.

He realised when he came round after his accident, which had caused his heart to stop and his brain to be starved of oxygen for several minutes, that his body was paralysed. Although he could hear every word his doctors spoke, he could not communicate with them.

"I screamed, but there was nothing to hear," he said, via his keyboard.

The Belgian former engineering student, who speaks four languages, said he coped with being effectively trapped in his own body by meditating. He told doctors he had "travelled with my thoughts into the past, or into another existence altogether". Sometimes, he said, "I was only my consciousness and nothing else".

The moment it was discovered he was not in a vegetative state, said Houben, was like being born again. "I'll never forget the day that they discovered me," he said. "It was my second birth".

Experts say Laureys' findings are likely to reopen the debate over when the decision should be made to terminate the lives of those in comas who appear to be unconscious but may have almost fully-functioning brains.

Belgian doctors used an internationally-accepted scale to monitor Houben's state over the years. Known as the Glasgow Coma Scale, it requires assessment of the eyes, verbal and motor responses. But they failed to assess him correctly and missed signs that his brain was still functioning.

Last night his mother, Fina, said in an interview with Belgian RTBF that they had taken him to the US five times for reexamination. The breakthrough came when it became clear that Houben could indicate yes and no with his foot. "Powerlessness. Utter powerlessness. At first I was angry, then I learned to live with it," he tapped out on to the screen during an interview with the Belgian network last night, AP reported.

Laureys, who is head of the Coma Science Group and department of neurology at Liege University hospital, has advised on several prominent coma cases, such as the American Terri Schiavo, whose life support was withdrawn in 2005 after 15 years in a coma.

Laureys concluded that coma patients are misdiagnosed "on a disturbingly regular basis". He examined 44 patients believed to be in a vegetative state, and found that 18 of them responded to communication.

"Once someone is labelled as being without consciousness, it is very hard to get rid of that," he told Der Spiegel.

He said patients suspected of being in a non-reversible coma should be "tested 10 times" and that comas, like sleep, have different stages and need to be monitored.

Houben hopes to write a book detailing his trauma and his "rebirth".

Jenni

I Tried

I went to the oral surgeons office today to see if I could get a panoramic done. I had never been there before, so I didn't know if it was going to work or not. Turns out, this machine wasn't accessible either. I had to turn my wheelchair around and back up to the machine. They took my headrest off my chair so the thing could take the x-rays around my head. When they tried to lower it, the machine hit my handlebars and it wouldn't go down far enough so that I could rest my chin on it. After we figured out it wouldn't work in my wheelchair, I suggested that I could transfer into a regular, smaller wheelchair. Before I did they tried to see if that would work, but the same thing happened.

The only thing I can do now is call around to different hospitals to see if they have machines that are big enough to do it. I may have to get like a CT scan or something like that. How do other people in wheelchairs get a panoramic done? Any suggestions? It's a good thing my teeth stopped hurting, otherwise it would be more urgent.

Jenni

Getting Wiser

According to the unbearable pain in my teeth and gums in the upper left quadrant of my mouth, I'm in my wise years. I have a wisdom tooth coming in; my first out of three. I was reading on the Internet about wisdom teeth and how you know if you have one starting to come in and I learned something. Apparently they call them wisdom teeth because people get them in their wise years (in this case 18 to 25 years of age).

I am going to an oral surgeon appointment on Monday. They are going to attempt a panoramic x-ray on me so they can view the wisdom teeth. Wouldn't you know my regular dentist office is not accessible. It's very small and they are not able to do a panoramic because with my wheelchair and the length of it I can't get close enough to the machine. I am hoping that the oral surgeon's office will be a little more accessible and able to do one because that's really the only way they can tell if they have to surgically remove my wisdom teeth. Personally I would just say go ahead and slice my gums open and pull those suckers out because it hurts like a word I won't say which obviously means that it's not growing in right. Maybe I should've gone to dental school. I think this is what they mean about being wise. It really does help to rant out loud. Thanks for reading my complaints; I feel much better now.

Jenni

Humor

I saw this video on a friend of mine's blog and just had to post it for you to watch. It is a quadriplegic on a ventilator with an inspiring message doing a comedy routine. One thing I use everyday is humor. I believe it is a great tool. It keeps me going and always lightens situations. It brings people up when they are down. It can be casual or really out there. This video says it all. The humor that he uses is exactly the type that I say everyday. Enjoy!



Jenni

It's That Time Again

This year seems like it's gone by so fast. It's already the middle of November; getting closer to the holidays. Which means that it's around the time that people start making lefsa. Yesterday my dad and sister came over to make some. You can click here to read my post about it from last year if you don't know what it is or need a recipe to make it.

I'm watching the Minnesota Vikings right now. They're leading 17-10, but that could change very quickly. It's only the middle of the third quarter. For those of you who are followers of football, it's been an interesting season with Brett Farve on the team. This is the first year I've really gotten into watching football. I find it actually quite exciting now that we have him on the team. Not everyone feels the same way. Especially fans of his former team, the Packers.

I've never really talked about sports on my blog before. I do like to watch them. After all, I did used to play basketball and softball. I'd like to know how you feel about sports and weather you watch them on TV or play them so feel free to comment.

Jenni

Stories from the Past

This is my creative nonfiction essay I wrote for my online creative writing class. It is just the rough draft, but I don't think I need to change much so I thought I'd post it anyways. By the way, the paragraphs and dialogue are structured wrong only because blogger won't allow me to use the tab key.

Hair Today, Gone Tomorrow

I am 16 years old. It is the end of the first week in November, 2002. I am in the ICU of Hennepin County Medical Center lying in a hospital bed. It has been seven days since I was in a terrible car accident that left me paralyzed from the neck down and on a ventilator. My mother, a beautiful, blonde-haired, blue-eyed woman is sitting by my bedside. She is examining my long dark brown hair.

"Jenni, I think it would be better if I just cut them all out," she says, staring into my blue eyes, leaning on the edge of the bed softly touching my forehead with her right hand.

"Please no," I beg, "promise me you won't!" I am looking at her with sad puppy eyes and a frown, trying to show her with my face how badly I want her not to do it.

She is talking about the six giant matted clumps of hair on my head. They are like rats' nests; a combination of blood, grease and filth. I have been lying on my hair for a week. The doctors and nurses are more concerned about my health and keeping me alive than my knotted-up hair. My mother is letting me know that it's time to get rid of the nasty bunches. I am pleading with her more, asking if there is any way that she could try to salvage as much hair as possible. My mother's intention is to cut every chunk to avoid further matting.

She spends a grueling 3 hours trying to de-tangle the masses. I am fading in and out of sleep due to the heavy drugs given to me for pain relief. While I am partially asleep, my mother asks the nurse on duty for a pair of scissors. The nurse turns around and looks at my mother with a puzzled face. She tells the nurse that it's necessary; she has been trying so hard, but this one clump is too big and too tangled to get so she is going to have to cut it.

I wake up to the sound of an alarm going off. I am relieved to see my mother still at my bedside. She looks at me with a concerned face. I ask her what is wrong. She tells me that she cut a chunk out of my hair while I was sleeping.

"Don't be mad, I had to do it," she exclaims. "It's just hair, it will grow back."

"But it was my hair!" I yell back. I'm sure she can feel the hurt in my voice.

***

It is mid-October, 2005. I am on my way to Rocco's hair salon a few blocks away from my house. My mother is driving me in our handicap accessible van that is custom fit for my wheelchair. We arrive at Rocco's and I get out of the van using the wheelchair lift. As I enter through the double doors, the first thing I notice is the smell of hair products; shampoo and conditioner, hair spray, gel. I am looking around, checking the place out. There are photos hanging on the walls of people posing, showing off their hairstyles. I go in further and check in at the reception desk. They take me over to a spot that they have prepared for me. They have moved the barber chair before I got there so that my wheelchair can sit right in front of the mirror. As I get into position, I hear blow dryers running and clients gossiping to their stylists about their seemingly busy lives.

I am going to be cutting 12 inches of my hair off and donating it to an organization called Locks of Love. They use the hair to make wigs for kids with alopecia, a disease that prevents them from growing hair. My decision to donate my hair came about when my mother told me that my hair was getting long. It is down to my elbows, the longest it's ever been. I decide that I just want to snip it all off and give short hair a try. My mother suggests that if I'm going to do that, I might as well donate it. I tell her it's a great idea, and wish I'd thought of it myself.

After a few minutes the hairstylist shows up in front of me. Her name is Sandy; she has brown spiked hair with highlights. She is wearing blue jeans with a white button up blouse on top, tucked into her waistband. She has a black vest draped over her blouse and cowboy boots on. Her personality strikes me. I can tell she is an eccentric free spirit who is positive and willing to go for anything, just by first glance.

"Are you ready?" asks Sandy in a husky voice.

I pause for a moment and then say, "I think so; as ready as I ever will be."

Sandy puts my long hair in a ponytail. She picks up a scissors and begins to cut right above the hair tie. When she is done, 12 inches of my hair is free from my head. She holds it up next to me and looks at my face in the mirror. I am overwhelmed with feelings. Thoughts and emotions are filling my head like water seeping into an open hole. My feelings are very strong, and I begin to show it. I am realizing that I am giving a piece of myself away; a piece that I once fought so hard keep.

My hair is now chin length. Sandy sprays it wet with a squirt bottle full of water. She then cuts the uneven ends straight before layering it all around. Then she cuts the front to the shape of my face. When the cutting is over with, she starts blow drying it and uses a round brush to curl the ends under.

"So, what do you think? Do you like it?" asks Sandy.

"It feels so different," I respond, "but I really like it. It makes me look older."

"Great! Anything else I can get you?" Sandy says as she looks at me and then my mother.

"I think we're good," replies my mother. Then she glances at me with a smile, "I am so proud of you! You're an amazing person and I'm glad you're my daughter. You're going to make such a difference on someone's life."

"Thanks," I say as we exit the salon. "I may not be able to walk or breathe on my own, but I can grow hair."

Jenni

Angel Light

I'm not quite sure where this picture is taken, but I think it is interesting. It is not digitally enhanced in any way. I do believe in angels and think it's cool how light can make shapes like this. I've actually seen another picture before of light making an angel.

Jenni

Personal Ad

For my interpersonal communication class I have to write a personal ad for myself. I've never done one before, so I've been searching the Internet to see what other people have written. I have to say, I found some interesting people out there. I'm seriously considering going on one of those dating websites. Not that I'm really looking for anyone right now, but it would be kind of interesting to see how it works. I've heard of many people meeting on the Internet and actually getting married.

The only thing I'm worried about is if no one responds or tries to contact me. I mean, there aren't many people who would actually seek out a quadriplegic on a ventilator. The statistics for me finding someone who can see past my disability are low. This is one of the things I struggle with the most. The future and what it holds. I'm trying to be optimistic though. I don't really tell a lot of people this, but it's easy to talk to a computer because it doesn't talk back. It's hard to explain these feelings to other people. I'm sure there are other quadriplegics or people with disabilities who feel the same way.

Jenni

Free Book

This is a press release sent to me in an e-mail from Danielle's foundation. I thought the book looked interesting, even for families of kids with other disabilities besides cerebral palsy and brain injury.

Danielle’s Foundation Empowers Special Needs Families with Free Book

Growing non-profit devoted to helping families of children with cerebral palsy and brain injury commits to mission of informing and supporting parents

PHILADELPHIA—Danielle’s Foundation, a growing non-profit organization dedicated to helping parents of children with cerebral palsy and brain injury, announces the publication of its new book, Getting the Therapy, Benefits, and Resources Your Child Needs: A Guide for Parents of Children with Cerebral Palsy and Brain Injury.

Authored by Richard P. Console Jr., one of the volunteers at Danielle’s Foundation, the book was written to help parents navigate the complexities and challenges associated with successfully raising children with brain injury and cerebral palsy.

The comprehensive, 176-page guide includes the following topics:

• Understanding your child’s diagnosis, and what it means for the future
• Funding your child’s care
• Securing effective and cutting-edge therapies
• Negotiating successfully with your insurance company
• Demystifying the often confusing world of government benefits
• Ensuring your child receives the education he or she deserves
• Estate planning for families of special needs children

“My reasons for writing this book are personal,” said Console, who helped found Danielle’s Foundation in memory of Danielle Vick, the daughter of a friend who passed away in 2008 from complications associated with anoxic brain damage at just 4 years old. “While Danielle’s life was short, it was incredibly inspirational, and though she is no longer with us, we take comfort in knowing that we can make her legacy live on forever”.

Console said the purpose of the book is to educate and empower families of children with brain injury and cerebral palsy, so they can effectively advocate for their children. While he admits that families of special needs children face difficult challenges, he feels that with knowledge and education comes hope. “Every parent wants the best for their child, but getting the benefits their child needs is not always easy, and a lot of parents don’t know where to turn for help and support. We want Danielle’s Foundation to be that guiding light to which families can turn.”

“Getting the Therapy, Benefits, and Resources Your Child Needs: A Guide for Parents of Children with Cerebral Palsy and Brain Injury” is FREE to parents who call Danielle’s Foundation today toll free at 1-800-208-3494.

Parents interested in learning more about Danielle’s Foundation, and the support and services it offers, may visit http://www.daniellesfoundation.org/ for more information.


About Danielle’s Foundation

Danielle’s Foundation is a non-profit resource that is committed to helping families of children with cerebral palsy and brain injury gain the knowledge to secure the therapy, benefits, and resources their children need. It was created by a team of grassroots volunteers whose mission is to help parents navigate through the challenges and complexities that arise while caring for their children. Their website, http://www.daniellesfoundation.org/, also offers hundreds of articles related to treatments and therapies, education, estate planning, and legal and financial issues. Join Danielle’s Foundation today to become a part of their support network, where parents can unite to share and exchange their knowledge to educate and empower each other via their online forum.

Jenni

Update

On Monday I went to the doctors to get more Botox injections in my neck and shoulders. It's so nice to have my muscles loose again. The downside is that in three months I will have to go back because it will wear off. I also got my H1N1 flu shot.

Yesterday I had my interpersonal communication class and we had a quiz on chapter 8 which was all about listening. I got 15/15! I guess that proves something, I know how to listen. I have a six page fiction paper rough draft due on the 14th for my online creative writing class. I'm looking forward to writing it. I got great reviews from my teacher on my creative nonfiction paper that I turned in about a week and a half ago.

This afternoon I got in the standing frame with my physical therapist, Nicole. Usually the nurses and PCA's just get me in but lately I haven't been able to get up to 90° before my blood pressure drops. Nicole wanted to try to figure out why I could only get up to about 60°. I had a feeling this would happen, but I ended up getting up to 90° in about 20 minutes. Half the time it takes me to get to 60° when I do it without her. We figured out that it was probably due to the fact that I do the standing frame in the morning because that's the time I have a PCA. Today I did it in the afternoon. I had been sitting up in my wheelchair all day versus just getting up from lying in bed all night long. That's partly why my blood pressure had been dropping.

Jenni

A Sudden Change

Today is the seven-year anniversary of my accident. I went to church this morning and they aired My Faith video that I made. It's very ironic that it just happens to be November 1; they didn't plan that on purpose. The pastor saved my video for last, and after showing it he read the first part of the about me section that I have on blog. It was very good and I think I made an impact on a lot of people. After the service, many people came up to me and said thank you for sharing my story. I posted the video below. I say basically everything in the video that I probably would have written in the post today talking about the anniversary of my accident.





Jenni

"Nobody can go back and start a new beginning, but anyone can start today and make a new ending"
-Maria Robinson

"It takes a lot of courage to release the familiar and seemingly secure, to embrace the new. But there is no real security in what is no longer meaningful. There is more security in the adventurous and exciting, for in movement there is life, and in change there is power."
-Alan Cohen

"There came a time when the risk to remain tight in the bud was more painful than the risk it took to blossom."
-Anais Nin

Happy Halloween!

The picture above is of my cat Ty showing off his best Halloween pose.

The link below is to an e-card that my sister sent me for Halloween. She used pictures of my dad, his dog, herself, me and Arnold Schwarzenegger to make up the characters. I tried to get the video on my blog but it wouldn't work, so you have to click on the link to view the video.

http://sendables.jibjab.com/view/dDjRtp813MVAl9ie

Jenni

Things To Think About

I found these to be quite funny. Check them out for yourself and let me know what you think:

If at first you don't succeed, skydiving probably isn't for you.

Before you criticize someone, you should walk a mile in their shoes. That way, when you criticize them, you are a mile away from them, and you have their shoes.

Under-Achievers Anonymous has an 11-step program.

Why do people park on a driveway and drive on a parkway?

Why is it that when we send something by car we call it SHIPment, but when we send something by ship we call it CARgo?

Why isn't there a mouse-flavored cat food?

Warning: dates on calendar are closer than they appear.

Make it idiot proof and someone will make a better idiot.

No sense being pessimistic; it probably won't work anyway.

I thought about joining the Optimists, but then I had my doubts.

Why doesn't glue stick to the inside of the bottle?

Funny, I don't remember being absent minded.

If quitters never win, and winners never quit, what fool came up with, "Quit while you`re ahead?"

Always remember you're unique, just like everyone else.

If marriage were outlawed, only outlaws would have in-laws.

Nostalgia isn't what it used to be.

There are 3 kinds of people in the world: those who can count and those who can't.

Why is "abbreviation" such a long word?

Why isn't phonetic spelled the way it is pronounced?

Of course I believe in free will. Do we have a choice?

I'd give my right arm to be ambidextrous.

I wonder how much deeper the ocean would be without sponges.

A journey of a thousand miles begins with a cash advance.

I went to a restaurant that had a sign, "Breakfast Anytime". So I ordered scrambled eggs during the Renaissance.

Never raise your hands to your kids. It leaves your groin unprotected.

I'm not into working out. My philosophy: No pain, no pain.

A baby-sitter is a teenager acting like an adult while the adults are out acting like teenagers.

Any married man should forget his mistakes. There's no use in two people remembering the same thing.

Don't take life so seriously...it's not permanent.

Don't worry about the world ending today...It's already tomorrow in Australia.

Give a man a fish and you feed him for a day; teach him to use the Net and he won't bother you for weeks.

I drive way too fast to worry about cholesterol.

Suburbia: Where they tear out the trees and then name streets after them.

The really nice thing about not planning is that failure comes as a complete surprise and is not preceded by a period of worry and depression.

99 percent of lawyers give the rest a bad name.

Why is lemon juice made with artificial flavors, but dishwashing liquid made from real lemons?

OK, so what's the speed of dark?

Depression is merely anger without enthusiasm.

Hard work pays off in the future. Laziness pays off now.

Many people quit looking for work when they find a job.

Eagles may soar, but weasels don't get sucked into jet engines.

24 hours in a day ... 24 beers in a case...coincidence?

Experience is something you don't get until just after you need it.

Monday is an awful way to spend 1/7th of your life.

Half the people you know are below average.

Light travels faster than sound. That's why some people appear bright until you hear them speak.

I just got lost in thought. It was unfamiliar territory.

It is hard to understand how a cemetery raised its burial cost and blamed it on the cost of living.

A fine is a tax for doing wrong. A tax is a fine for doing well.

I'd kill for a Nobel Peace Prize.

Borrow money from pessimists - they don't expect it back.All those who believe in telekinesis, raise my hand.

The early bird may get the worm, but the second mouse gets the cheese.

Axe me about eubonics

Jenni

The Month for Birthdays

Happy birthday mom! I want to thank you for everything you do for me. You're the best mom anyone could ever have. I appreciate you so much and love you.

Jenni

Did You Know?

I get autonomic dysreflexia.

According to SCI-info pages, "Autonomic dysreflexia, also known as hyperreflexia, means an over-activity of the Autonomic Nervous System causing an abrupt onset of excessively high blood pressure. Persons at risk for this problem generally have injury levels above T-5. Autonomic dysreflexia can develop suddenly and is potentially life threatening and is considered a medical emergency. If not treated promptly and correctly, it may lead to seizures, stroke, and even death.

AD occurs when an irritating stimulus is introduced to the body below the level of spinal cord injury, such as an overfull bladder. The stimulus sends nerve impulses to the spinal cord, where they travel upward until they are blocked by the lesion at the level of injury. Since the impulses cannot reach the brain, a reflex is activated that increases activity of the sympathetic portion of autonomic nervous system. This results in spasms and a narrowing of the blood vessels, which causes a rise in the blood pressure."

Commen warning signs for autonomic dysreflexia include a fast, major increase in blood pressure, pounding headache, flushed or reddened skin, goosebumps, heavy sweating, blurry vision or seeing spots, anxiety or jitters, a stuffy nose, and tightness in chest or flutters in your heart or chest. When I get autonomic dysreflexia, the first thing that happens is my blood pressure increases. If it goes on for longer, I get goosebumps, a headache, and my skin becomes red and blotchy. I have never experienced any of the other warning signs listed above, but people with lower injury levels tend to get them.

If any of these warning signs appear, there are a few steps that have to be taken. Proper treatment of autonomic dysreflexia includes determination and removal of the triggering stimuli. First, sit up or raise head to 90°. This will bring the blood pressure down. Second, loosen or take off anything tight. Third, check bladder for drainage. Fourth, call your health care professional.

Causes of autonomic dysreflexia according to SCI-info pages:

"There can be many stimuli that cause autonomic dysreflexia. Anything that would have been painful, uncomfortable, or physically irritating before the injury may cause autonomic dysreflexia after the injury.

The most common cause seems to be overfilling of the bladder. This could be due to a blockage in the urinary drainage device, bladder infection (cystitis), inadequate bladder emptying, bladder spasms, or possibly stones in the bladder.

The second most common cause is a bowel that is full of stool or gas. Any stimulus to the rectum, such as digital stimulation, can trigger a reaction, leading to autonomic dysreflexia.

Other causes include skin irritations, wounds, pressure sores, burns, broken bones, pregnancy, ingrown toenails, appendicitis, and other medical complications."

The most common reason why I get autonomic dysreflexia is if my bladder is full. All I have to do is cath and it goes away. The next most common reason is if I am laying on a wrinkle or somethings too tight on my body. If there is any pressure inside or outside of my body, I will get dysreflexia. My blood pressure has never gotten to dangerous levels, and I have never actually called my doctor because of getting dysreflexia. I'm lucky that I can detect it soon enough and do something about it before it gets bad.

Jenni

Faith Story

Yesterday I went to my church and they videotaped me sharing my faith story. It will take about a week for them to edit it. They are going to show the video at all three services next weekend. I'm excited for people to hear my story. In the video I talk about my God and who He is to me and how He is my life. I also talk a little bit about the accident and what happened to me. I will be posting the video on my blog when they finish editing it for people to view if they please.

Jenni

"If you have faith you have hope and if you have hope you have everything."
-Anonymous

Today's Lesson

I received this in an e-mail and thought it was worth sharing:

One day a farmer's donkey fell down into a well. The animal cried
piteously for hours as the farmer tried to figure out what to do.

Finally, he decided the animal was old, and the well needed to be
covered up anyway; it just wasn't worth it to retrieve the donkey.

He invited all his neighbors to come over and help him. They all
grabbed a shovel and began to shovel dirt into the well.

At first, the donkey realized what was happening and cried horribly. Then, to everyone's amazement he quieted down.

A few shovel loads later, the farmer finally looked down the well. He
was astonished at what he saw.

With each shovel of dirt that hit his back, the donkey was doing something amazing. He would shake it off and take a step up.

As the farmer's neighbors continued to shovel dirt on top of the
animal, he would shake it off and take a step up.

Pretty soon, everyone was amazed as the donkey stepped up over the
edge of the well and happily trotted off!

Life is going to shovel dirt on you, all kinds of dirt. The trick to
getting out of the well is to shake it off and take a step up.

Each of our troubles is a steppingstone. We can get out of the deepest wells just by not stopping, never giving up! Shake it off and take a step up.

Remember the five simple rules to be happy:

Free your heart from hatred - Forgive.
Free your mind from worries - Most never happen.
Live simply and appreciate what you have.
Give more.
Expect less

NOW .......

Enough of that crap. The donkey later came back, and bit the farmer
who had tried to bury him.

The gash from the bite got infected and the farmer eventually died in
agony from septic shock.

MORAL FROM TODAY'S LESSON:

When you do something wrong, and try to cover your ass, it always comes back to bite you.

Jenni

Pictures from My Birthday

Above are some pictures from my birthday yesterday when my mom, sister and I went to Benihana restaurant for lunch. I had so much fun! I hadn't been there for about five years or so. I had chicken and it comes with rice, zucchini, onions, and mushrooms. The chef cooked everything in front of us.

The first picture is of me when we first got there. The second one is our chef Aaron. The third picture is a chicken he made out of egg and the fourth is a heart he made out of rice. The last picture is of some of the waitresses singing happy birthday to me in Japanese.

Jenni

Happy Birthday to Me!

Today is my 23rd birthday. I'm going to go out to lunch to a restaurant called Benihana. They cook the food right in front of you. I'll post pictures later today.

Jenni

I'm Back

I was able to get all of my homework done this week. I had a quiz in my Interpersonal Communication class on Tuesday and got 14/15. Last Saturday I went to the Twin Cities Book Festival for my Creative Writing class. I attended a book reading, which I had never done before. It was very interesting to listen to the author read a chapter out of his book. I also had a lot of writing to do that I finally finished this morning, including a detailed paper on the reading I attended.

I had a hard time staying away though. I think I'm addicted to my blog. There wasn't a day that went by that I didn't think about it and want to write a post. Although I couldn't because every time I was on the computer I was writing for class. It did give me a chance to think about things that I want to post about, which is good.

Jenni

Blog Turns 1

Happy birthday blog! Today is the one-year anniversary of my first post. This blog has been the best tool for getting my feelings out and helping other people. Thanks for being a part of it.

I have a lot of writing work to do for my online class in the next week. Tomorrow I'm going to attend a book festival and listen to a reading. Then I have to write a paper about it. I also have to do my weekly discussion posts and two page journal entry.

I'm going to be taking a week off from posting on my blog so that I can keep up with my school work. It's going to be different because I have been blogging for the past year, but I need the extra time. Thanks for your understanding. I will still be checking my e-mails and any comments people make.

Jenni

October Birthdays

I had a really fun weekend. On Friday night my family celebrated October birthdays. There are so many of us with birthdays in October, that every year we have a party. On Sunday it was my aunt Sandy's 50th birthday (sorry I told the whole world Sandy). We had a surprise birthday party for her. We invited a bunch of people including college and high school friends. The only thing she knew was that we were having a "small" get together for her birthday. She had no idea exactly how many people were going to be there. It was very fun to see her reaction. I wonder what I should do next October for my mom's 50th.

Jenni

Without Help

The past three weeks have been long. I have nurses that work for me 24/7. They come for 12 hour shifts from 7 AM to 7 PM and 7 PM to 7 AM. Usually, I will also have a PCA from 7:30 AM to 11:30 AM to assist in my morning cares and getting me out of bed. However, for the past few weeks we haven't had a PCA to help during the weekdays, only on Saturday and Sunday. I think we got a little too used to having help because it was very difficult and time-consuming for the nurses to do everything themselves. My mom came down to help out when I needed it so that the nurses wouldn't get burned out. Last Friday I met and interviewed three candidates. I chose two of them because the PCA that works on the weekend will be on maternity leave in two months. They are going to do a split schedule. One of them trained in on Friday and the other yesterday. It was very nice to actually have a PCA to help out. I can't wait to see what they're capable of starting tomorrow.

Jenni

Happy October 1

It's breast-cancer awareness month. My blog will be one year old in eight days. My birthday is on the 19th and I will be 23. Good month!


Jenni

Update on School

I am doing really well in both my classes. In my interpersonal communication class at school we have been talking about different emotions and feelings. This chapter has actually helped me to dig deep inside and let go of emotions I didn't know I had. On my quiz last Thursday, I got 15/15. For my homework tomorrow, I had to write an emotions letter that described an emotion that I have been unwilling or unable to share with someone else.

Jenni

Help Me Help Others

I feel like I have so much to give, but not enough resources to do the things I want to do. My goal in life is to help others. I understand that I am doing that with my blog and that just by sharing my story it helps people, but I want to do so much more. I see all the people hurting around the world; I hear all the stories of others who need help. It saddens me to think that I cannot do everything and help everyone.

There are people out there who have lost their homes, their jobs, their family and they have nowhere to turn. There are people with disabilities who need medical equipment, physical therapy, even remodeling done on their homes that they aren't able to get around in. I've always said that I wanted to start a nonprofit organization to help others in need. I'm just not quite sure how to go about doing that. If anyone has ideas let me know.

Jenni

I Believe...

I received this in an e-mail. I'm not quite sure who wrote it but I found it to be very true.

Subject: Things to think about

A Birth Certificate shows that we were born. A Death Certificate shows that we died. Pictures show that we lived!
I Believe....That just because two people argue, doesn't mean they don't love each other. And just because they don't argue, doesn't mean they do love each other.
I Believe...That we don't have to change friends if we understand that friends change.
I Believe...That no matter how good a friend is, they're going to hurt you every once in a while and you must forgive them for that.
I Believe...That true friendship continues to grow, even over the longest distance. Same goes for true love.
I Believe...That you can do something in an instant that will give you heartache for life.
I Believe...That it's taking me a long timeto become the person I want to be.
I Believe....That you should always leave loved ones withloving words. It may be the last time you see them.
I Believe...That you can keep going long after you think you can't.
I Believe...That we are responsible for what we do, no matter how we feel.
I Believe....That either you control your attitude or it controls you.
I Believe...That heroes are the people who do what has to be done when it needs to be done, regardless of the consequences.
I Believe...That money is a lousy way of keeping score.
I Believe...That my best friend and I can do anything, or nothing, and have the best time.
I Believe...That sometimes the people you expect to kick you when you're down, will be the ones to help you get back up.
I Believe...That sometimes when I'm angry I have the right to be angry, but that doesn't give me the right to be cruel.
I Believe...That maturity has more to do with what types of experiences you've had, and what you've learned from them.....and less to do with how many birthdays you've celebrated.
I Believe...That it isn't always enough to be forgiven by others. Sometimes, you have to learn to forgive yourself.
I Believe...That no matter how bad your heart is broken the world doesn't stop for your grief.
I Believe...That our background and circumstances may have influenced who we are, but we are responsible for who we become.
I Believe...That you shouldn't be so eager to findout a secret. It could change your life forever.
I Believe...Two people can look at the exact samething and see something totally different.
I Believe...That your life can be changed in a matter of hours by people who don't even know you.
I Believe....That even when you think you have no more to give, if a friend cries out to you........you will find the strength to help.
I Believe...That credentials on the wall do not make you a decent human being.
I Believe...That the people you care about most in life are taken from you too soon.
The happiest of people don't necessarily have the best of everything; they just make the most of everything.
Be thankful for all the wonderful people who help us throughout the journey of life.
Life isn't about waiting for the storm to pass.
It's about learning to dance in the rain.

Jenni

Another Picture

Above is a picture of my sister and I at the art show. She cropped it and changed it to black and white. I think it's a great picture of us. If you're wondering whose fingers are wrapped around my headrest they're my aunt Sandy's. I'm not sure why she was cut out. I'm sure she'll have a talk with me later about that one.

Jenni

Good Comments

Just letting you all know there has been great side conversations going on in the comment sections of my posts (especially my last one). Very interesting thoughts and views. Thanks for reading and commenting.

Jenni

Think about It

I called this post Think about It because I'm going to ask a bunch of real-life questions and I just want people to ponder for a moment. Something that I wonder is what you would do if you were in my situation. Everyone deals with situations and handles things differently. For those of you who have not gone through this ordeal, how would you react to all of the sudden waking up and finding out you were paralyzed? What sort of things would go through your mind? How would you handle it? I know it's hard to imagine unless you're actually in that situation, but try to put yourself there.

Now I want you to imagine a different scenario. What if you knew you were going to become paralyzed before it happened? Again, how would you handle the news? How would you prepare? What things would you do before it happened? I brought this up because there is someone out there who knows they are going to become a quadriplegic on a vent but doesn't know when. It is a very different situation. In my case I just woke up and found out. I didn't get a chance to prepare or figure out what things I needed before hand. Then again I don't know which would be better. It's a lot to think about and imagine.

Don't feel obligated to share your thoughts. This was just to get people thinking. If you'd like to, you can leave a comment. I would love to hear what you have to say. Also, feel free to comment if you have gone through one of these situations.

Jenni

How Great Thou Art Show

Yesterday I went to an art show at my church. I had one of my paintings displayed in it. The pictures above are of me next to my painting and my painting alone. You can click on them to enlarge. The theme for the art show was Wonder. It was based on Psalm 139:14 in the NIV Bible, "I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." Whether or not someone's art was accepted depended on how well the artist interpreted the theme.

It was great to look at all of the other art as well. There were many different medias such as photography, poetry, painting, woodwork, and mixed media. I even got to meet some of the artists. They also had an artist directory that shared each artist, a description/
inspiration for their piece, and a brief bio about them. I went through and looked at every piece of art. For every one I looked up the artist and read the info about them. It was very interesting to read how they described an interpreted their work and shared their life. I hope to do it again next year.

Below is my info that I put in the directory:

Description/Inspiration: For this piece I used a technique involving leaves. I painted watercolor onto the leaves and placed them on a wet piece of paper. I then painted the background. This is the effect it makes after the paper dries and the leaves are pulled off. My inspiration for this piece was the beautiful work God has created and the power that he has to shine through it all.

Bio: My name is Jenni and I am 22 years old. On November 1, 2002 I was in a car accident. I broke my neck at C-1 C-2 and injured my spinal cord. I am a quadriplegic paralyzed from the neck down and dependent on a ventilator to breathe. Despite my disability, I live each day to the fullest. I use art as a form of expression. My unique way of painting involves putting the paintbrush in my mouth while my nurse holds the paper. Another form of expression I use is writing. I maintain a blog online at people from all over the world read.

Jenni

Sun Shining

It is the middle of September and I can't believe how nice the weather is here in Minnesota. The temperature has been in the 80s this whole month; at least 10° higher than normal. We haven't even had any rain. I've been trying to get outside just about every day. It's weird that it is this warm and autumn is 3 days away. The leaves have started to change colors already.

The picture above is one that was taken in my front yard. We have tons of black-eyed Susan's, which the tree frogs love. They sit on the petals all day long sunning themselves. The bees go crazy for these flowers as well. I love just watching all of the little critters. I guess you could say it's my entertainment when I'm outside.

Jenni

The Accident

Many of you know that I was in a car accident, but you may not know how the accident happened. I don't remember anything about it; only what I've heard from others. I guess we were going 60 mph and trying to make an exit. We were going way too fast for the circumstances and the car, a mini SUV, started rolling. The top of the car hit some sort of sign or pole while rolling, crushing the roof in, and then landed back on it's wheels. It was a single car accident.

There were five of us in the car and I was behind the driver's seat. Although I did break my neck and injure my spinal cord, it could've been a lot worse. I did have my seatbelt on, which probably saved my life. The other four people in the car sustained mostly minor injuries except for one person whose neck broke but didn't injure the spinal cord and was in a coma for a month and a half. Everyone has recovered and they are doing remarkably well.

Because the car was crushed, they had to use the Jaws of life to cut me out. I was airlifted to HC MC hospital. From there I began my journey to where I am today. A factor that always seems to amaze me is who was behind the car when the accident happened. In the first car was a woman who called 911. I ended up meeting her a few times while in the hospital. I don't know how the order goes on these last two but in one of the cars was an ER nurse who had just gotten off of work. The other was a doctor going to a high school football game who said that he hadn't taken that road in two years. All three helped in some way to save my life. Coincidence? No one will ever know.

If you have any questions feel free to ask in the comments section or e-mail me. I'll try to answer them as best I can.

Jenni

"Every tragedy contains the seeds of triumph."
-Scott Sorrell

Good Weekend

Yesterday I entered one of my paintings in my church's art show. The show is next Saturday, but it's a juried show so they still have to pick which ones make it in. I'm sure mine will be in it though. I won't know until the 16th when they send me an e-mail.

Today I went to this thing outside in Wayzata, MN called James J. Hill days. They had a bunch of nonprofit booths and also an art fair where people could sell their work. It's pretty big with a lot of people. They closed off a long street for it. There was also about an hour long parade with about 60 entries, including the animal Humane Society with dogs and the Wayzata High School marching band. I like doing things I don't do very often. I'm not much of a parade watcher but it was fun and I enjoyed watching the kids run in the street and pick up all the candy people were throwing.

On Tuesday I have it interpersonal communication class again and I will be taking a quiz on chapter 2. I suppose I better get right on reading the second half of the chapter. I also have to read chapter 3 for this class and chapter 3 my creative writing online.

Jenni

Ride of a Lifetime

A couple of weeks ago I went for a ride in the sidecar. I put a picture above but the video still needs a little bit of editing. That's why it's taken me so long to put a post up about my ride. I thought I would just put a picture up so you can at least believe me. I'd been talking about going in the sidecar for at least two years now. It took a while to plan, but I finally did it! I had so much fun! They lifted me out of my wheelchair and into the sidecar using a Hoyer lift. My nurse took my ventilator off of my wheelchair and put it in the trunk. I know that sounds dangerous, but it was actually really secure in there. We only went down the street and back. I would definitely do it again. I will hopefully get the video on my blog soon, but if for some reason I don't, I will upload it onto YouTube and give you a link to it.

Jenni

Creative Writings

I wrote this for my creative writing class. We had to write a paragraph about a thrilling or anguishing incident either from our childhood or adolescence. I chose to write about the time I woke up in the hospital after my accident. I used all five of my senses and similes and metaphors to describe the experience. I don't really remember the moment that I woke up, a lot of it is from what I've been told and what I have imagined.

My eyes opened to the sound of beeping alarms and glaring lights. Still drowsy from all of the sedatives, I struggled to figure out where I was and what I was doing there. My thoughts thickened like fog as I looked around, imagining the worst. I felt alone like a lost child in a crowd of thousands of strangers. The room was stale. It was breathing with people; rushing to get to their destination. I heard crying from behind the curtain to the left of me. I saw a flash of color brush past the end of the bed I was laying in going towards the cry.

After learning from my family that I was in the intensive care unit, and that something serious had happened to me, chills fell over me. I was in severe shock! I tried to talk but no words came out. My mouth was as dry as cotton and I could taste the plastic from the tube going down my throat into my lungs. I tried to sit up but my body wouldn't allow me to. I was paralyzed. I had broken my neck and injured my spinal cord in a car accident.

The next writing is a poem that I wrote. We had to describe a relationship we had with either an animal or a machine in a paragraph or poem. I chose to write a poem about my vent since our relationship is inseparable.

My Lifeline

My lungs are expanding, in out, in out
I feel my chest rise and fall
I am one with the vent
It's breathing for me
The sound is like an airplane flying ahead
Colored lights flash across the surface
Attached to me always
It flows through me like wind through trees

Can you tell I love to write? I will share more as time goes on. Let me know what you think. I'm always looking for feedback and constructive criticism.

Jenni

Busy As a Bee

For a while I was so bored and now I'm so busy. Classes are going great, but they are definitely time-consuming. It's good though because I would rather have stuff to do than not. I've been doing a lot of writing for my online class. It's been great being creative though. I'll be sharing some of my work in future posts. My communication class is just getting started. We took a quiz Thursday on chapter 1. I have more reading and writing to do for next week. Better get a move on it! Starting tomorrow.

Jenni

"The world is so fast that there are days when the person who says it can't be done is interrupted by the person who is doing it."
-Anonymous

Birdman

The other day I was watching 60 minutes and they re-aired a clip that they had done a couple years back. It was about Forrest Bird, the inventor of the Bird respirator. Bird is now 88 years old, and is still enjoying life flying his planes and working long days. He first invented a makeshift respirator for his friend who had trouble breathing. Soon, he was trying to find a way to make an affordable, portable respirator for anyone to use. He has saved millions of lives. If you'd like to watch the video clip from 60 minutes, click here. I encourage you to take the time to watch it. It is very good.

Jenni

Fill Me up

A couple of weeks ago I went to get my teeth cleaned at the dentist. They took x-rays and then the doc looked at my teeth and told me I had three cavities. I scheduled an appointment to go in to get them filled. Today was the day.

The dentist office isn't exactly accessible. The chairs in the rooms don't move so I had to squeeze my wheelchair in between things. Then I had to tilt my chair back as far as it went; I felt like I was going to fall backwards. He put some topical in my mouth to numb it before he injected the novocaine. It tasted disgusting. I made a face at him and he told me it was supposed to taste like a pina colada. I guess I'll never be drinking one of those. It's probably not exactly the same. Anyways, then he gave me a shot of novocaine and my mouth got all numb. He started drilling my teeth about five minutes later. The noise sounded like a jackhammer, not to mention the pieces of teeth that were flying out of my mouth in every which direction. (Excuse my similes and use of detail. I'm practicing for my creative writing class.)

After he drilled them, he filled the holes. Then he polished it and off I went. Only with a little trouble because my mouth was numb and I was trying to drive my wheelchair with my tongue. I did make it home safely. However, I wasn't able to eat anything for a while. I was starving! It took a while for the novocaine to wear off and the feeling to come back in my mouth. I am still sore from the needle. Don't get me wrong, I do love going to the dentist. It's when they start poking me with needles and drilling holes in my teeth where I get a little nervous. Everything turned out okay though and I have no more cavities.

Jenni

Equipment and Power

Along with being a quad comes a lot of equipment that needs to be plugged in. I think I have at least seven power outlets in my room, not including two power strips. The first picture is of one of the power strips in my room. Each plug goes to some piece of equipment that I need and use. Whether it be my ventilator, my bed, or my suction machine, it's all important. Therefore, so is electricity.

I depend solely on electricity to stay alive because I'm on a ventilator. If there was no power, my ventilator would only run for 30 minutes or so on an internal battery before it would shut off. However, it is able to be plugged into an external battery. The batteries that I use are lithium batteries and can last about 3 to 4 hours. I plug my wheelchair vent into the external batteries when using it. It allows me to go places without having to be plugged in to an outlet.

The second picture above is of my battery shelf. It consists of backup batteries, battery chargers, and an oxygen tank on the bottom shelf.

When I use the ventilator in my room, it is plugged in to an outlet. One thing I have to worry about being on a ventilator is not having power. If the power did go out, I have a back up generator that's big enough to run the electricity in my room. It takes about 7 seconds to kick in after the power goes out. This allows me to stay plugged in in my room and not have to use external power to run my ventilator. Having a generator makes it a little less stressful when the power goes out.

Jenni

Classes Begin

Today was my first day of my Interpersonal Communication class at Normandale Community College. The first day wasn't really all that exciting because all we did was go over the syllabus and listen to a lecture about the first chapter. I think it's going to be a fun class though. The material is very interesting so far. I still have to read the first chapter of our book.

My online class, Creative Writing, started yesterday. I've never taken an online class before. I think it'll be easy as long as I keep up with the discussions and homework. I'm sure you all know from reading my blog that I love to write. We'll be writing poems and nonfiction and fiction stories. Exactly the kind of stuff I like to write. This class will be perfect for me! I'll definitely let you know how things are going and what I'm doing in my classes along the way.

Jenni

Did You Know?

I have hypotension.

Hypotension refers to an abnormally low blood pressure. For most individuals, a normal blood pressure is 120/80. The top number is called systolic and the bottom number is called diastolic. Any sort of drop in blood pressure, even by 20, is considered low blood presure. People with spinal cord injuries usually have low blood pressure due to their injury. The main symptom of hypotension is lightheadedness or dizziness. If the blood pressure is sufficiently low, fainting and often seizures will occur. (Hypertension refers to high blood pressure. The number on the blood pressure cuff in the picture is definitely not mine.)

My normal blood pressure is usually around 90/60. However, blood pressure changes with position change. If I sit up too quickly or stand up in my stander, my blood pressure drops. When that happens I feel dizzy and sometimes things start to go black. As soon as someone lifts my legs up if I'm sitting, or puts me back down into a sitting position if I'm standing, my blood pressure rises.

I do have parameters that I'm supposed to go by. If my blood pressure gets below a certain point (60 for the systolic and 45 for the diastolic) and maintains at that level, my nurses are supposed to notify my doctor. However, in my stander my blood pressure usually drops pretty low and there really are no parameters unless I pass out, according to my doctor. As long as I'm still talking, I'm okay. The lowest my blood pressure has gotten that still registered on the machine is 49/36. If it gets any lower it will read as an error.

Jenni

Just Be Yourself

Just Be Yourself

To be who you are
is to be enough.
To share who you are
is to share enough.
To do what you love
is to do enough.

There is no race to win
and nothing to be proven,
only dreams to be nurtured,
a self to be expressed,
and love to be shared.

Never doubt your worth,
and always know,
without any doubt,
that you are truly valued.
-Donna Newman

A little poem to show that just being yourself is enough.

Jenni

Nurses

I have learned how to communicate better and be very patient because of having nurses. I direct all my own cares. That includes how things get done to me and what I want them to do, which can get exhausting.

I'm trying to learn that there is more than one way to do things. If someone were to do something for themselves, they would do it their way. However, my nurses do everything for me and so sometimes it can be a compromise on how it's done. Sometimes it's hard to explain the way that I would do things and just because it's my way doesn't mean it is always the best way.

I'm very lucky to have such good nursing care. Not many people have full nursing coverage and as great of staff as I do. When I first came home from hospital, I didn't have full nursing coverage. In fact it was barely 50%. Now I hardly have any open shifts, usually only if someone is sick or on vacation.

My nurses have to chart everything they give me and everything they do to me. That includes my intake and output for the day. Sometimes it gets a little frustrating; having someone write down every little detail in my life. That's one reason I put on a smile and don't show much emotion.

Jenni

Another Look

I sent my hair into Locks of Love. I thought I would put up another picture of me with my hair short. It's already grown since I got it cut two weeks ago. I've been able to style it many different ways and it's super easy. Plus, it's a lot cooler without all that hair on my neck; especially on these humid 90° summer days. I'm still planning on growing it out and doing it all over again. It's a nice change every once in a while and definitely worth it. To know that just by donating my hair I am making a difference in someone else's life is an amazing feeling. For me, hair just grows; for others, it doesn't grow at all. I am very lucky and now someone else will be too.

Jenni

"Generosity is not giving me that which I need more than you do, but it is giving me that which you need more than I do."
-Kahlil Gibran

A Little Bored

I haven't really been doing much these past few days. I've been playing games, watching movies, surfing the web and going outside. I'm planning on painting in a little bit. Tomorrow I'm going to church in the morning. Next week I'm going to get my books for class.

Jenni

Sleep Tight

Due to my 24 hour nursing, I don't get as decent amount of sleep at night as I should be or could for that matter. At night, the nurses come in at least every hour, sometimes even more, to do various things. I get turned every three hours, cathed every two and 120 mL (4 ounces) water flush every hour. That's enough to wake someone up a few times at least.

I try to go to sleep around 10 PM, however, that doesn't always work out. If I had a long day and I'm really tired, I may fall asleep sometime between 8 PM and 9 PM. Falling asleep that early usually means that I will be awake a lot at night. My nurses try to wake me up so that I will sleep later, but that doesn't work too well. Sometimes I'm able to stay awake until 10. I get the best sleep if I fall asleep around 11 PM because then I'm so tired I don't wake up during the night. Most nights I wake up in the middle of the night at least once, if not more; sometimes for 5 to 10 minutes and sometimes for an hour or two. It just depends on the night and when I go to sleep. I automatically wake up between 4:30 AM and 5 AM, no matter what time I went to bed or how much sleep I got. That's when I start my cares in the morning.

Depending on how much sleep I've gotten that night, depends on how much I sleep during the day. I usually take an afternoon nap, but if I'm tired enough I can fall asleep at any time just about anywhere. I actually sleep in my wheelchair very well. It's very easy for me to fall asleep in a car while riding to and from appointments. I also fall asleep in school, while watching TV, and when I'm on the computer; sometimes midsentence. If I fall asleep on the computer with the microphone on, when I wake up I find that my speech-recognition software has typed out the word "him"hundreds of times, one for every breath. I've even fallen asleep while driving my wheelchair (no joke, that's why I don't have a license). Especially after I've been asleep in a car, then I start to drive my wheelchair when I'm still half asleep. I guess it is pretty dangerous when you think about it. Sometimes the nurse has to take control over my chair so that I don't run into anything. Probably a good thing being that the other day I was on my way home from a walk and was so tired I started falling asleep; almost rolled into a ditch. Luckily my nurse was able to wake me up and help me get home.

Jenni