The Site That Breathes

Finals Week/Spring Semester

jtic20@gmail.com (Jenni) — Thu, 17 Dec 2009 16:22:00 +0000

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

jtic20@gmail.com (Jenni) — Wed, 16 Dec 2009 20:17:00 +0000

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

jtic20@gmail.com (Jenni) — Mon, 14 Dec 2009 04:18:00 +0000

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...

jtic20@gmail.com (Jenni) — Thu, 10 Dec 2009 21:47:00 +0000

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

jtic20@gmail.com (Jenni) — Mon, 07 Dec 2009 19:43:00 +0000

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

jtic20@gmail.com (Jenni) — Sat, 05 Dec 2009 20:58:00 +0000

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

jtic20@gmail.com (Jenni) — Thu, 03 Dec 2009 16:05:00 +0000

"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

jtic20@gmail.com (Jenni) — Sun, 29 Nov 2009 21:26:00 +0000

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

jtic20@gmail.com (Jenni) — Thu, 26 Nov 2009 16:14:00 +0000

"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

jtic20@gmail.com (Jenni) — Tue, 24 Nov 2009 16:00:00 +0000

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

jtic20@gmail.com (Jenni) — Mon, 23 Nov 2009 22:15:00 +0000

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

jtic20@gmail.com (Jenni) — Fri, 20 Nov 2009 18:30:00 +0000

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

jtic20@gmail.com (Jenni) — Tue, 17 Nov 2009 22:01:00 +0000

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

jtic20@gmail.com (Jenni) — Sun, 15 Nov 2009 20:01:00 +0000

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

jtic20@gmail.com (Jenni) — Thu, 12 Nov 2009 21:29:00 +0000

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

jtic20@gmail.com (Jenni) — Wed, 11 Nov 2009 21:51:00 +0000

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

jtic20@gmail.com (Jenni) — Mon, 09 Nov 2009 03:23:00 +0000

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

jtic20@gmail.com (Jenni) — Sat, 07 Nov 2009 02:56:00 +0000

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

jtic20@gmail.com (Jenni) — Wed, 04 Nov 2009 20:14:00 +0000

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

jtic20@gmail.com (Jenni) — Sun, 01 Nov 2009 19:48:00 +0000

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!

jtic20@gmail.com (Jenni) — Sat, 31 Oct 2009 18:55:00 +0000

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

jtic20@gmail.com (Jenni) — Fri, 30 Oct 2009 02:07:00 +0000

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

jtic20@gmail.com (Jenni) — Thu, 29 Oct 2009 03:04:00 +0000

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?

jtic20@gmail.com (Jenni) — Tue, 27 Oct 2009 02:30:00 +0000

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

jtic20@gmail.com (Jenni) — Sun, 25 Oct 2009 03:33:00 +0000

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