Vol2, Issue3

Volume 2, Issue 3 – March 2002

Welcome

Keep Those Prayers Coming…

By Vinny Distefano

Since the day of the accident, I have had an opened hot-line to The Big Guy upstairs. Often, during the day, someone will ask “…How’s she doin’?” I’ll hand over an Angel-Hawk card and give them the short edition. I’d love to say to them, “Here’s her number. Call her and ask her yourself.” But when they leave, I find myself praying so hard for Angie to be able to come home soon... The prospect of someone Angie’s age, twenty-seven, spending fifty, sixty or seventy years in a nursing home is out of the question. My research shows why…

The Associated Press
N E W   Y O R K, July 23 —Many nursing homes are so understaffed they may be endangering the welfare of their patients, according to a new report by federal health officials. Read this story

Recently, I’d seen a story on the news about a study funded by the government on the healing power of prayer, too. So I did some more digging. There is an enormous amount of data out there supporting prayer. No one wants to report on this kind of study, though. It’s hard to report on prayer and not get lumped in with the religious-right in this country and many of their overboard policies and tactics. 

     Can Prayer Heal?

Scientists Suggest Recovery May Be the Hand of God at Work

Here’s an excerpt…"This study offers an interesting insight into the possibility that maybe God is influencing our lives on Earth," says O'Keefe. "As a scientist, it's very counterintuitive because I don't have a way to explain it."

U.S. Funds Prayer Research

NewsMax.com Wires
     November 14, 2000

NEW YORK, (UPI) - U.S. scientists launched a five-year study to determine if prayer intervention can improve the health of cancer patients. The enterprise was funded by the National Institutes of Health, a federal agency, and was reported in the November issue of the journal Research News.

It seems like a dream, but is it possible that scientists are admitting they can’t explain everything in our universe? Can doctors be far behind?  And, as you’ll read in the story,

"From a purely scientific standpoint, I thought it was illogical," says O'Keefe. "I don't really think of spirituality normally as playing a role in scientific, rigorous, double-blind placebo-controlled scientific studies. It's two different realms."  

There they are again. Those words, double-blind and placebo. Even when the tightest controls possible were followed, these scientists had no explanation as to why prayer worked. Could it be that science will never have the “proof” it needs to say that God and prayers do all the healing in our world? How often have we heard words like, “I’m sorry…We did all we could”. What exactly does that mean? Did the drugs not work properly? Or did they and for some unknown reason, the person was taken from us anyway. Or what about the reverse. Without any explanation at all, a person, who by all medical standards shouldn’t be getting better…is! When I lost my Dad in 1991, I was glad that the pain from his cancer was finally gone. But I was told by my family, a few days before, he was found sitting up in a chair by the window in his room. No one knows how he got there. He was heavily drugged and had a broken hip. He somehow disconnected his I.V’s and got to the chair. He could hardly move when I saw him earlier. Was this some kind of sign to us that he would be OK? And, as I wrote last year as well, I have a photo with him in the background. The photo was taken a year after he died. Yes, I have checked for double exposures. As a photographer, I know what it looks like. This is not.

Are these hints to us to look harder for our answers, beyond what we can see and touch? I know I have heard Angie’s voice from time to time…while I’m awake and working, with no one else around. It’s usually just my name, but some times it’s her giggling. And the dreams just keep on coming. So vivid and real, when I wake up, I have to stop and remember, we’re not quite there yet. Is it all in my mind or is she being allowed to communicate with us so we keep on working and never give up? If anyone could convince God to let her signal us while she’s healing, it’s Angie.

So…do I have your attention yet? Does He have your attention yet? I am probably the farthest thing from a preacher as one can get. I won’t be making any guest appearances on Benny Hin or Jerry Falwell. But as Angie continues to improve slowly, I will ask that the people who read our newsletter, past it onto another and another…to get as many people as we can to pray for Angie’s recovery. I know her name is on a number of prayer lists around the country. She needs your help to spread the word to your friends and family and co-workers. Send this newsletter to your e-mail addresses. I won’t spam anyone with unsolicited e-mails. Please visit Angie’s guest book and tell us who you are. My prayer is that one day Angie will answer you and thank everyone herself.

Till next time, be safe…Hugs and Prayers

Pass it on and tell a friend to stop by. Thanx

Vol2, Issue2

Volume 2, Issue 2 – Feburary 2002

Welcome

I’m Not Blind, ya Know…

By Vinny Distefano

Double blind studies. What are they? Well, it’s where neither the doctor nor the patient knows whose getting a real drug or a placebo. Only the administrator of the study knows. This is the scientific basis for drug effectiveness. Why try to fool them? Are you telling me that if they “think” they are getting a drug, that somehow their minds can help heal them, without the drugs? Hmmm, sounds like voodoo, don’t you think, doc? How could our mind’s be so powerful, that tricking it into using sugar to heal a real medical condition can work? Hmmm, once again. What if you’re not sure if the person knows or as in Angie’s case, was in a coma at the time she was given a drug ( or not ) to protect her brain from the injuries she sustained. I think it’s time for science to take a look at itself and find out what’s really going on.

       Existing programs out there do not cover her HBOT treatments. Why? Because science can’t figure out a way to trick the mind into thinking it’s receiving oxygen under pressure. So, the answer for patients who could be helped is, “NO, it doesn’t work”. If you have a wound, sure. It’s wonderful. The oxygen helps the tissue to heal. Anyone can see that. My point exactly. If you look at where Angie was before she began her HBOT treatment and now, there is a marked difference that can be seen by anyone. Here’s a partial list of conditions covered by HBOT…

·         Actinomycosis - only as an adjunct to conventional therapy when the disease process is refractory to antibiotics and surgical treatment

·         Acute carbon monoxide intoxication

·         Acute peripheral arterial insufficiency

·         Acute traumatic peripheral ischemia - HBO therapy is a valuable adjunctive treatment to be used in combination with accepted standard therapeutic measures, when loss of function, limb or life is threatened

·         Chronic refractory osteomyelitis - when unresponsive to conventional medical and surgical management

·         Crush injuries and suturing of severed limbs - as in the previous conditions, HBO therapy would be an adjunctive treatment, when loss of function, limb or life is threatened

·         Cyanide poisoning

·         Decompression illness

·         Gas embolism

·         Gas gangrene

·         Necrotizing fasciitis - as an adjunct treatment, as above

·         Osteoradionecrosis - as an adjunct to conventional treatment

·         Preparation and preservation of compromised skin grafts

·         Soft tissue radionecrosis, as an adjunct to conventional treatment

A pretty impressive list... In all of these conditions, the oxygen reaches the cellular level as it heals. So why are brain cells so different? It seems to me, of all the cells in our bodies that could be helped by increased oxygen, they are at the top of the list. Keep an eye out for this special…This September the Discovery Channel takes us on an hour long journey inside "The Healing Chamber"

 Let’s Get Wet

Swim with the dolphins?…

OK, let’s move on now. I’ll keep on the HBOT story and update it as we get the info. What about physical therapy? All of us are familiar with athlete’s getting whirlpools, massages, heat/cold packs to keep them in top shape for competition. Who hasn’t sprained an ankle and put ice on it to keep the swelling down. Stretching before exercise is known to reduce injuries, too. And we’ve all heard the phrase, “Use it or loose it”. Our bodies respond to such things. Then why, as in Angie’s case, is it like talking to a wall when we request exercises to help keep her body ready fit. The answer most often given, “It’s not worth it”. Short and sweet. Oh sure, if they’re wrong and Angie recovers, then they want to operate to repair her tendons and ligaments. Sounds nuts. As I have written in past issues, I’ve seen folks “exercising” Angie in a way you would not be able to do to someone who could respond, because it has to hurts!  So we search and search for alternatives. I have said many time, I would like to buy Angie a wet suit and get her over to Discovery Cove to swim with the dolphins. It’s not as crazy as it sounds. Angie really relaxes when she get her twice a week whirlpools at the nursing home. While they are done to help with her hygiene, the benefit to her body is quite evident. All of her muscle spasms are reduced significantly and it’s easier for her to “work out”, i.e., rotating her shoulders and hips. So why not take it a step further? Well, Barbara and Ronnie have found a pool for disabled folks where we can actually get in with Angie and “swim” around. We should know something in a couple of weeks. And as for Discovery Cove, well, the summers coming, The Angie Hobbs Foundation is coming, the wheels are turning to get our documentary wrapped and on the air and nothing is going to get in our way. I want Angie to be proud of what we’re all trying to do here.     

We’re gearing up for the fight of our lives. We’ll use their own logic to convince them that a traumatic brain injury is not the end all they’ve made it out to be. There’s evidence out there. Next month, studies about the healing power of prayer.

Till next time, be safe…

 Pass it on and tell a friend to stop by. Thanx

Vol2, Issue1

Volume 2, Issue 1 – January 2002

Welcome

It’s Coming…

By Vinny Distefano

Well, what can I say?  Angie and we have all come a long way this past year. I was recently speaking to my sister about where Angie was and where she is now. I have a great deal of respect and awe at what the doctors accomplished and how they saved Angie in the beginning. I will be forever grateful. An amazing array of tubes, machines and medicines. But their books stopped where Angie’s real recovery began. As she began to use less and less technology and more and more of what God gave her, the help ends. Just when she needed to shift gears and change to a different regiment of care, it was non-existent.

Naturally, the first year of her recovery was to get her thru the critical stages and get her off the machines. Then to slowly stop the medications to see if she would take over “running” her body again. As we watched her fight her way thru every stage, we asked, “Where can she go now to continue stimulating her body and mind to recover?”  The short answer, “Nowhere!” Whoa…the answer in “the book” is, nowhere? Who ripped out the pages at the end of the book? Do you walk out of a ballgame before the ninth inning? Do you leave the movie theater before her hero rides off into the sunset? How could it be, who wrote these books??????????

Thru August 1999 to January 2001, we searched for answers, on the Web, local organizations, etc. not knowing where to go for help. Slowly, painfully slowly, we were finding information on alternative avenues to try. In January 2001, we began a concerted effort to ask the world thru the Internet and this newsletter, so The Angel-Hawk Times began. We wanted to keep everything we’d found available to other families going thru this. No one should have to search in the dark. Some answers began to filter in to guide us, but the realization of a knowledge void was also evident. So many people with the same questions, so many people getting the same answers from the same “books”. Sorry, there’s no data on this or that so insurance or government programs won’t cover it…It was that frustration that has led us to be begin the process of “covering it”. The process of getting a non-profit organization started is lengthy. It will take four to six months. But the goal is to get a real program of different therapies here in Central Florida for people with Traumatic Brain Injuries. Every program we’ve contacted has rejected Angie for one reason or another, but the bottom line revolves around two scales, The Glasgow Coma Scale and The Ranchos Scale. Each describes levels of consciousness, awareness, mobility, and vocal levels. Each program has a minimum level, which they have found to be necessary for admittance. Fall short of these levels and you’re out of the system on your own. The one’s I have contacted are all doing great work getting people back into this world again. There is nothing out there that will take someone who falls short, Sorry Angie, no pun intended (inside joke)

I have a passion to fill this void. So while we’re getting approval, we will continue to document Angie’s day to day in this newsletter and on film, to be aired in the future. Angie still talks to me in dreams. I pray for her to be able to take over this someday and tell you in her own words to find a way to pitch in. I never paid attention to the Life-Flight helicopter in the past, but for two and a half years, I can’t stop hearing it. It’s constantly in the air. I live just east of downtown Orlando where it is based, ORMC. Look down at the road and see all of the skid marks. The road is completely covered with them. How many of those families are going thru the same things we are? How many could we help? More questions, but this time I will find the answers. And at the same time, we’ll be writing a “new book”- to take over where there was a dead end before. We’re going into uncharted territory as far as awakening the mind, but since no one is willing to risk their reputations on saving even one person, I envision many different unconventional approaches to getting the person out of the dark and back into our lives…back into their lives.

Happy Birthday, Sweetie  XXOOXX

Till next time, be safe…

 Pass it on and tell a friend to stop by. Thanx

Vol1, Issue12

Welcome

 Volume 1, Issue 12 - December 2001

2001...It’s A Wrap…

By Vinny Distefano

Wow. Another year in the can. I mentioned last month, we have made many contacts on the internet. I would like to end this year with a directory of all that we have found useful. I hope some of these links can be helpful to others. Before I get started, let me say have a Happy and Safe New Year to everyone. Some of the links listed thru out the year in this newsletter, have stopped working. The links below have been tested as of Dec 2001 and are OK.

Hyperbarics at Complete Wellness Medical Center - These are exciting times for The Complete Wellness Medical and Hyperbaric Center of Winter Park. We are proud to introduce the area's first Hyperbaric Center for Alternative Medical treatment, one of approximately 24 centers throughout the United States.

Ocean Hyperbaric Center - The Ocean Hyperbaric Center is believed to be the original center specializing in the neurological applications of hyperbaric oxygenation and the potentially recoverable brain.

H B O T Online - This site is designed to give both the expert and the lay person a clearinghouse of information for the benefits and applications of Hyperbaric Oxygen Therapy.

Head and Brain Injury Rehabilitation Resources from FINR - The Florida Institute for Neurologic Rehabilitation, Inc. (FINR) is dedicated to excellence in the provision of rehabilitation, education and vocational services to both children and adult survivors of brain injury.

Traumatic Brain Injury Resource Guide - The purpose of all rehabilitation programs at the Centre for Neuro Skills is to reduce disabilities, maximize independence, and achieve the maximum possible quality of life for clients who have suffered brain injury within the client's existing financial constraints.

Rancho Los Amigos Coma Scale - The Rancho Levels, as they are called, are an assessment tool or scale that does not require cooperation from the patient. Rather; they are based on observation of the patient as he responds to environmental stimuli.

Glasgow Coma Scale - Physicians and other health care professionals frequently use the Glasgow Coma Scale; to evaluate the patient's level of awareness, which indirectly indicates the extent of a patient's Neurologic injury. 

Traumatic Brain Injury - Common Vision Problems from Stroke or Traumatic Brain Injury

Brain Injury Guide - The Brain Injury Guide evolved after my own brain injury and cognitive rehab at Mesa College in San Diego, Ca.

Jason Sykes - I am the child who cannot talk. You often pity me. I see it in your eyes…

Mandy Bradshaw - Mandy Bradshaw is an amazing young woman who has touched many people's lives. She was severely injured in an automobile accident in August 1999 and continues to touch many people even now as they minister to her. Please pray for her complete recovery. . .

CRA - Contact Reflex Analysis and Designed Clinical Nutrition - Contact Reflex Analysis is a simple, safe, natural method of analyzing the body's structural, physical, and nutritional needs.

Hospital Santa Monica - In the past 17 years, we have treated over 15,000 patients with an alternative, holistic approach for cancer, multiple sclerosis, cardiovascular disease, arthritis, candidiasis and other chronic degenerative diseases…

Rancho Los Amigos National Rehabilitation Center - Rancho Los Amigos has been one of America’s rehabilitation leaders for more than half a century.

Recovery Awareness Foundation – Surviving Brain Injury

Welcome to Jodi House - Jodi House is a nonprofit corporation established to provide services to brain injured adults.

Brain Injury Association of Florida - The mission of this Association is to improve the quality of life for persons with brain injury and their families by creating a better future through brain injury prevention, research, education, support services, and advocacy.

MUMS National Parent to Parent Network - MUMS is a national Parent-to-Parent organization for parents or care providers of a child with any disability, rare or not so rare disorder, chromosomal abnormality or health condition.

Quackwatch Home Page - Your Guide to Health Fraud, Quackery, and Intelligent Decisions

Coma Recovery Association - We are a not-for-profit organization for coma and brain injury survivors, family members, friends and professionals.

Brain Injury Association USA Home Page - The mission of the Brain Injury Association is to create a better future
through brain injury prevention, research, education and advocacy.

Undersea & Hyperbaric Medicine Society - The Undersea and Hyperbaric Medical Society (UHMS) is the primary source of information for diving and hyperbaric medicine physiology worldwide. 

EurekAlert! – The premiere Web site for science news since 1996.

HealthAnswers - HealthAnswers.com has a new look with more health info than ever! Visit our Library for our Encyclopedia and Drug Finder. Click on News for what's current. Or try Health Topics for articles, videos, and more.

The Trauma - What is Brain Injury - The most widely accepted concept of brain injury divides the process into primary and secondary events.

Never Give Up – It was December 6, 1990. I had sustained a severe brain injury in a car accident, leaving me in a coma. Over the next 3 months, I gradually emerged from that coma into a strange world that was very different from what I had known before.

Florida Dept. of Health – Health and Human Services

The National Academy for Child Development (NACD) – The National Academy for Child Development, is an international organization of parents and professionals dedicated to helping children and adults reach their full potential.  

Comas.net - Links

Coma Recovery Association, Inc - To provide information and referral to families and survivors of coma and head injury, so that they can make informed choices regarding treatment, rehabilitation and socialization alternatives.

FindADoc: Find Doctors, MDs, PhDs,Physicians, Dentists, Research Scientists – Where Doctors and Patients Interact.

Medscape – Medical links

As we continue into 2002, we will update this list. If anyone comes across a link we should add, please e-mail it to us and it will be included in the future. To the Hobbs family, all my love and continued support and prayers. To Angie, I love you, Sweetie. One day we will be working together again as we build this site and foundation to help you and others.

  

Till next Year, be safe…

 Visit “Angie” and “…For Angela” at www.Angel-Hawk.org and click on details “To Help Angela”. And send your comments and suggestions to: newsletter@Angel-Hawk.org. They are always welcome. Pass it on and tell a friend to stop by. Thanx

Vol1, Issue11

Volume 1, Issue 11 - November 2001

Winding Down 2001…

By Vinny Distefano

I hope everyone had a Happy Thanksgiving. I know this is a “bit late” this month. We’ve had a very busy November this year, so I wasn’t able to see Angie as much as usual. I kept thinking, though, how much she has changed this year, physically and mentally. We don’t have the medical tests to show these improvements in her mind and body, but you don’t have to be a brain surgeon to see it. Something is going on up there. All because we won’t throw in the towel as the “professionals” told us. She, - goes home, has gone “shopping” with her Mom & Dad, is make more sounds, moves her head, arms and legs, especially her right leg and can relax so much that it is hard to lift her. Her two+ year detour is slowly merging back to its original path. That path will now take different turns now, but I believe she has a special purpose and mission to fulfill. It answers the question, Why?

Where We Stand

The Answer Is Out There… Somewhere.

We have learned so much this year. I don’t know how many people are injured in this way, but what I have found out is that a great many more would benefit from personalize, one-on-one therapy. This is not conjecture or wishful thinking. This is based on our observations. For instance, Angie receives a whirlpool twice weekly. The stimulation to her mind and body is so evident. You could almost see the “thank you” on her face. She is so relaxed afterwards, she will be sleepy for a while. No drugs, just a simple whirlpool bath. ( The fact is, she needs considerably less medication. She maintains her blood pressure, heart rate, breathing, etc. All of the functions we were told she would not be able to control because of the injury to her brain stem.) This is a simple therapy that needs to be done daily. It only takes about a half hour. A half hour that helps her in ways we can see. After she wakes, it is so easy to work with her. Her fingers, her wrists, her toes, etc. are more relaxed and can be straightened and exercised without causing her discomfort. She’ll let us know when it’s gone too far and she’s had enough. But now give her another half hour the next day. And the next day…

Here’s my take on it. The only logical reason it’s not happening is that we don’t have “documented proof” to show the benefits of such a program. The only logical reason a program doesn’t exist is that we are fighting against the original diagnosis. The government programs that could help with the costs of therapy and rehabilitation don’t cover person like Angie. She has been place on a shelf with any number of other people with similar challenges. I would like to work with the nursing home to see if we can come up with such a program. It can’t cost any more money. They wouldn’t be able to implement it. Their hands are tied as well. Perhaps we can start with a 30-day,intense study. We can take range of motion measurements before and after. Document changes in concentration, movement and muscle tone. I am confidant we can show at the end Angie will be measurably improved. We notice these changes after just one whirlpool. Could 1 times 30 be better?

We’ve seen changes in her before and after her HBOT as well. She used to need a sedative to go into the chamber. She doesn’t require one now. Most times she’ll just close her eyes and relax, take a nap, or just “kinda chill” looking around. There’s a TV in her line of sight. Does she watch it? You tell me she’s not!  If she gets her right leg in an awkward position, up too high or behind the pillows in there with her, most times she’ll correct it herself. Once again, when she comes out, she’s almost always relaxed making it harder to transfer her from the chamber to her chair for the ride back to the nursing home. And when she gets back to her bed, most times she’ll just relax and go to sleep for a while.

How To Get There From Here?

Changing The Future…

The short answer - I don’t yet know. That won’t stop her family or me, though. We just have to find someone out there who will listen. To that end, we’ve been searching the internet. Don’t get me wrong. We have some great people helping us here in Orlando. Dr. Rhodes and her staff have been wonderful at the Wellness Center. And we need the continued help of the nursing home staff. But I have found so many families plagued by the same questions and still no definitive answers. Why is this so difficult to get someone to listen? If so many people are experiencing the same problem, doesn’t that mean that one exists and something must be done about it?

 So, it has become obvious…just do it! We have to convince the established medical community that its solution for people like Angie is outdated and needs to be overhauled. It’s time to listen to the families and find out what’s working and expand on it. This fence is going to start squeaking. Not in an adversarial way, but in an effort to combine resources and really make a difference in the lives of people with a traumatic brain injury. The time for “let’s wait and see” is now over. It is so difficult to see some you love, so close to a break through, being held back by an antiquated system. There have been extraordinary gains in medicine and stem cell research will take us to an unbelievable future.

Somewhere, one person or a small group of people got it all started. This is the path I mentioned at the beginning for Angie. God has altered the future she had planned. She is the one person who will bring about this change. We, her friends and family, are the small group to implement these changes. The New Year is upon us. We have over 700 hits in this website since we started last January. Not bad for word of mouth. The documentary, begun this past summer, will continue. I envision the end of part one having a “Thank You” from Angie. We still need your support with the HBOT treatments. Thanx to those who have helped. We’re still waiting for the follow-up report on the HBOT conference held during the summer. That could be a large hurdle overcome if the consensus shows what we already know…It Works!

To all, a Great Holiday Season.

Till next month, be safe…

Pass it on and tell a friend to stop by. Thanx

Vol1, Issue10

Volume 1, Issue 10 - October 2001

Here We Go…

By Vinny Distefano

Starting this month, we’ve setup a Guest book on our homepage. Angie’s Dad & Mom had the idea to add it. I don’t know why I didn’t think of it sooner. Even when I can’t get to see her, I’m thinking about her and her family. I’m always on the lookout for something or someone new who can help them. I think I was looking too hard and missed the obvious. Anyway, stop by and send a special message to Angie.

Also, there is another person for you to meet. Mandy Bradshaw. She had arrived in the I.C.U. about the same time as Angie. We met her folks, Pam and Rick and many of their family and friends as well. Her website is Pray4Mandy.com. It chronicles Mandy’s struggles and triumphs. They have photos, poems and letters from those who know her. All who have had a friend or family member, who has been hurt in this way, tell the same stories. The professional rejection of anything positive. The pain of not knowing, but believing in miracles. And the deep pain felt from the immeasurable love for your son or daughter, your sister or brother…your friend.

We live thru their lives. What do they feel? What do they see? Are they in pain? What are they trying to say? It all hurts us. Yet as much as we cry, as overwhelming as it sometimes seems to get, it can only be a trivial pain in comparison to being trapped inside one’s self. Every time I get tired at work and don’t go to see Angie, I feel I’ve let her down. It is rare that a few days will go by that I don’t see her. If even for just an hour or two. I’ll tell you, though, there is nothing in my day to day life, work, bills or any of the normal stressors that will ever again get me down the way they used to. When ever I’m feeling sorry for myself, I think of Angie and her struggle. It really puts life into perspective. None of that really matters if you stop and think about it. All we have is each other. It’s why we’re all here. Our faith, our family and our friends. As seen as a result of September 11, 2001, our toys or status don’t matter. We’re all in this together, no colors…no races. Just people. This is over eleven years old, but wraps it up…

Go Away

words and music

©1990 Vin Distefano

I've seen in my lifetime, too many people cry…

   While others close their eyes hoping it might

   Go Away, Go Away, Go Away out of sight.

We've all heard stories of kids needing to be loved.

    While others close their eyes hoping it might

   Go Away, Go Away, Go Away out of sight.

Nightly reported news, the morning’s front page blues.

We're all the same, no one's to blame.

Maybe it's just a dream to live in harmony.

   But if we close our eyes we all just might…

   Go Away, Go Away, Go Away out of sight.

Where We Stand

Getting Closer…

Angie has her family and neighbors checking up on her daily. Some new friend, too. She is still being challenged with staff changes and having a new CNA that hasn’t had a patient like her before. I don’t know why. So we teach them Angie-101. We request of them to follow their own guidelines: Pillows here, wedge there and switch in two hours. Put her braces on her wrists and remove them in two hours. Alternate with her leg brace so they’re not all on at once. Check her tube feeding is not empty. Make sure she doesn’t have air in her stomach. Don’t pack pillows all around her. She wants to move her right leg around. Be sure to crank the bed up high enough, 30 degrees, so she is not lying too flat. Don’t put blankets on her and don’t turn off the air conditioner! She can still get hot if she’s covered too much. We can kick the covers off, she can’t yet. Don’t work on her as if she wasn’t there. Try to be careful moving her. She can’t complain of pain. Don’t let that fool you. She feels everything. And don’t put a towel around her neck in case she vomits. It drives her crazy. She hates anything around her neck.

Please get her up and out of bed each day and put her in her chair. Tilt it back a bit so she is not sitting straight up. Please don’t let her slouch with her head hung forward. She can’t swallow in this position. And she does swallow! I don’t want to see saliva dripping from her mouth. That drives me crazy! Imagine how you would feel if it was you and you couldn’t tell anyone you were uncomfortable. Talk to her. She loves to hear voices. She “perks up” when she hears the family come in. She really mellows out when we take her out for a “walk”. She loves to feel the breeze in her face. I’ve told her parents I want to take a spray bottle of water out on these walk. That way I could “spritz” her and tell her it was a big wave on the beach. She loves the beach. She can yell at me and call me whatever she wants later for tricking her. I’d really like to get her a wet suit and take her to Discovery Cove to play with the dolphins. Hmmm, sounds like a plan…

So the next time you think it’s all too much and you can’t take anymore, think about helping someone who would trade places with you in a split second. (In NY, that’s the time it takes for the traffic light to go from red to green and the guy behind you blows their horn. Hey, the President said to get back to normal!). It’ll help you and it will surely help them.

Till next month, be safe…and please…

Pass it on and tell a friend to stop by. Thanx.