Cate’s Progress Video

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Ryan, Cate, and I made it to Philadelphia yesterday! Cate did very good on the plane and in the car. Charlie is at home with papaw playing with her new Buzz doll and very happy.

We are staying with our friends who are here with their son too. They have an amazing story, http://www.defyingthediagnosis.com. I am so impressed with how hard they work and how far their little boy has come!

Each time we visit or send in a report to IAHP  we also make a video so the experts can see her progress and the execution of her program at home. This is done every 3 months. Here is the video of Cate. I have taken out her oxygen enrichment (so no one tries it at home) and kinesiology tapping (because it is long). If you are interested in learning more about these things let me know. I also wrote a blog about the oxygen enrichment last year that may explain it better, http://www.injuredtoincredible.com/2014/07/24/respiratory-patterning-machine-and-masking.

 

I look forward to brining you more updates this week!

 

Going to Philadelphia! Revist time already at IAHP!

We will arrive in Philadelphia today to start our revist week at The Institutes for the Achievement of Human Potential, iahp.org. I love this time with our friends, Cate’s advocate, and all their experts. They will do a full day of evaluation to see all of the accomplishments of the past 6 months, the parents will have 2 full days of course work, and we will finish off the week with 2 more days of learning Cate’s new program for the next 6 months.

The past few weeks have not been great for Cate. She injured her arm (just now feeling better) and she had a serious seizure this week. She did not have to be admitted to the hospital but she did have to be sedated. We have pretty much given up on trying to figure out what triggers her seizures but we do our best to be prepared when it happens. This was her first seizure of any kind in 5 months.

Cate is now feeling good and ready for her trip. She does pretty good with airports and flying so we are ready to arrive. I will post her revisit video this week. She is crawling really well!

Thank you for your prayers and support!

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Cate at the airport waiting for our flight.

Crawling on carpet, hard wood, gym mat, everywhere!!

Cate crawling on a smooth surface.

Cate crawling on a smooth surface.

Cate and Charlie are doing great! They have had their ups and downs over the past few months with a few minor viruses, teething, and typical 2 year old stuff.

Charlie has been spending more time with “friends” and she is such a sweet little girl. She is happy to play independently but she loves interacting with other kids her age and older. She shares, plays games, and fits in so well in unknown situations. Sometimes I wonder since we stay at home most of the time how she will do with new people and new places and I am one proud mom!

Cate overall has been doing exceptional! During the time of year where the flu is everywhere, viruses, strep, and other sicknesses I am always concerned that we will repeat last winter when she was sick for over a month. She had several seizures and could not progress in her program. This winter she has been so much healthier. Even when the girls have gotten a virus Cate’s symptoms have been minor and have not slowed her down much at all. She has NOT had a seizure since October! And that one was stopped within 3 minutes using her seizure protocol of masking (see oxygen enrichment post). Cate has been working hard all winter long!

Cate has been crawling so well on the smooth surfaces (wood floor, gym mat, tile) that I have started putting her on a short nap rug. Although you have more traction on your arms and legs on carpet it is much harder to crawl; your stomach is “stuck” to the ground. Gravity is not always Cate’s friend. She can crawl 3-4 feet on the carpet before she has to take a rest, but she does it! We are very proud of her and do our best to encourage her every day. Some days are better than others.

 

Cate crawling on the carpet to get her dog!

Cate crawling on the carpet to get her dog!

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She is almost there!

She is almost there!

And he stands up...

And he stands up…

Okay, well then I will have to crawl to you.

Okay, well then I will have to crawl to you.

Got you!

Got you!

No one said it was easy.

I have had a good number of mom’s and dad’s tell me to enjoy this time with my kids now because it won’t last long. I understand the concept but sometimes it is hard.  I wonder if they can tell I am just trying to managae day by day. Having multiples and a child with a disability is not easy. I keep waiting for the feeling of time to “fly by” and it hasn’t yet come for me. Right now it is late nights, long days, and alot of work! I thought I worked hard in my previous corporate life but it doesn’t even compare.  My children are a wonderful gift from God. If you see me struggling please remind me of this and to enjoy this time. I know that in a few years I WILL cherish these memories.

The Institutes Collaborators, Past and Present

I cannot take any credit for this post but it was well written and a great summary for those unfamiliar with The Institutes. Ryan and I learn more about these contributors every time we visit and learn more programs, I am very impressed!

photograph used with the permission of The Glenn Doman Family
Glenn Doman founded The Institutes For The Achievement of Human Potential in 1955. Glenn’s groundbreaking work with brain-injured children secures his position as the grandfather of ‘Neurodevelopmental Therapy’, a term created by practitioners who use an altered version of Glenn’s work.The Institutes medical and clinical staff around the world must be members of The International Academy of Child Brain Development to be qualified to use The Institutes and Glenn Doman’s methods.

The extraordinary line up of Glenn Doman’s collaborators – both past and present (since Glenn’s passing in 2013), and the phenomenal results achieved by children on The Institutes program over the past 50 years, makes the authentic IAHP program the absolute ultimate in therapy for children with neurological conditions, or brain injuries.

One only has to read an edition of The Institutes Magazine – the ‘In Report’ – to see just how impressive the results really are. Blind children achieving sight, deaf children beginning to hear, immobile children moving their bodies for the first time – all because of the work of their own parents, guided by Glenn Doman’s team.

THE INSTITUTES COLLABORATORS INCLUDE THE FOLLOWING:

This Golden Wall in the Auditorium at The Institutes campus in Philadelphia displays the signatures of many collaborators.

The Institute for Functional Medicine
www.functionalmedicine.org
A very notable supporter of the work of The Institutes is Dr. Jeffrey Bland PhD, FACN, FACB, Founder of The Institute for Functional Medicine.
Dr Bland authored an article in ALTERNATIVE THERAPIES, nov/dec 2008, VOL. 14, NO. 6 21. The Article – AUTISM: ASKING THE RIGHT QUESTIONS TO FIND THE RIGHT ANSWERS – includes the following:

“Upon reflection, I recognize that the program at the Institutes for the Achievement of Human Potential is the quintessential functional neurology program. It shares all the concepts that underlie the principles of the Institute for Functional Medicine. Within its formalization and therapies may lie the solution to autism.”

Read the full article here: Autism- Asking the Right Questions to Find the Right Answers

Dr. Raymundo Veras
Dr Raymundo Veras was a notable supporter and published the book Children of Dreams, Children of Hope.
This is the story of Dr. Raymundo Veras, a brilliant Brazilian surgeon and his journey into the world of brain-Injured children. After Dr. Veras’s son, Zé Carlos was injured in a diving accident, Dr. Veras dedicated his life to fixing his son’s injury. That devotion led him to The Institutes for the Achievement of Human Potential in Philadelphia, where he learned from Glenn Doman and the staff, how to help brain-injured children. From there he returned to Brazil and began treating many more children. His success with the children the world has called ‘Down syndrome’ led to the first successful methods to treat their problems. This book is the story of Dr. Veras’ second life and the first chance for wellness for many of the world’s children.

Raymond A. Dart, M.D.
Dr. Raymond A. Dart was an anatomist and anthropologist, best known for his 1924 discovery of a fossil of extinct hominids in South Africa. Naming the skull Australopithecus africanus, he established it as a new genus and species. He wrote of his discovery in Adventures with the Missing Link.

Professor Dart taught at the University of the Witwatersrand in South Africa from 1923 to 1958. In 1960, he wrote to Glenn Doman after reading The Institutes first report on the treatment of brain-injured children. Referring to the stages of neurological development mapped out by The Institutes, he wrote, “The development of the individual does indeed recapitulate the evolution of the species.”

Glenn met Raymond Dart in 1966, during The Institutes expedition to study the Bushmen of the Kalahari Desert and other African tribes. Raymond Dart and his wife, Marjorie, then came to The Institutes, where he became chairman of The Institute of Man, holding the Chair of Anthropology created through a grant from the United Steelworkers of America.

For over twenty years, the Darts made The Institutes their home. Professor Dart continued his scientific research on man’s development and his life-long role as both student and teacher, returning to South Africa each year for several months.

Temple Fay, M.D.
Dr. Temple Fay held the chair of neurosurgery and neurology at Temple University Medical School. Today hundreds of thousands of people are alive because of his invention of human refrigeration. Dr. Fay personally created the first two hypothermia machines. One is now at the Smithsonian Institute in Washington, D.C., and the other is in the British Museum in London.

Glenn Doman first met Dr. Fay in 1941. After the Second World War, they worked together intensively, and Glenn Doman became Temple Fay’s principal student. They opened a private practice together at Norwood, and in 1955 Glenn Doman founded the Rehabilitation Center at Philadelphia. Dr. Fay was the chief medical consultant of what later became The Institutes for the Achievement of Human Potential.

Many of The Institutes principles of brain growth and development are built upon Dr. Fay’s discoveries.

Edward B. LeWinn, M.D.
Dr. Edward LeWinn, a respected internist at Einstein Hospital, first learned of The Institutes work in 1957. He referred one of his patients who had suffered a stroke to the Rehabilitation Center at Philadelphia (the original name of The Institutes). Thinking that the Center was a nursing home, Dr. LeWinn was astonished when Glenn Doman helped this elderly patient walk again.

As the years went by, Dr. LeWinn became more and more involved with The Institutes. When he retired, he became a full-time member of The Institutes medical staff. With Glenn Doman, Dr. LeWinn helped to pioneer The Institutes detoxification program. He published many articles about The Institutes work and wrote a book entitled Human Neurological Organization. This was the first book written for the medical community that explained the scientific rationale behind The Institutes work.

Evan Welling Thomas, M.D.
Dr. Evan Thomas was an outstanding public health physician who was credited with helping to create the original protocol to eliminate syphilis in the United States.

He joined The Institutes as a full-time volunteer member of the medical staff in 1964. Dr. Thomas was the brother of Norman Thomas, who ran a number of times as a candidate for President of the United States. Dr. Thomas worked alongside Glenn Doman and Dr. Edward LeWinn. He authored Brain-Injured Children, the second book ever published for the medical community explaining The Institutes work.

Even in his eighties, Dr. Thomas always remained young in spirit. The Evan Thomas Institute for Early Development is named in his honor.

Roselise Wilkinson, M.D.
Dr. Roselise Wilkinson came to The Institutes in 1964 seeking help for her eldest son and never really left. She graduated from Temple University Medical School at a time when few women studied or practiced medicine. After joining The Institutes staff, she served as The Institutes medical director from 1964 to 1998. In addition, she was a member of the Xingu Expedition to Brasil Centrale in 1969.

Dr. Wilkinson was involved in important research projects at The Institutes, including respiratory treatment and Oxygen Enrichment. She developed the detoxification program and was the first to implement it. This is the same program used today at The Institutes.

Dr. Wilkinson especially enjoyed her involvement with the children and their families. She took great care to teach parents well, so that they clearly understood the goal and technique of each program they undertook with their child. She enjoyed a long career as medical director and served on The Institutes board of directors.

Golden Wall_Linus PaulingLinus Pauling and Ava Helen Pauling
Ava Helen Pauling was the wife of Dr. Linus Pauling. The Paulings were friends of The Institutes up to the time of their deaths. Linus Pauling is the only man in history who has won two Nobel Prizes entirely by himself, not shared with others. One prize was for his scientific work in chemistry. The other prize was for peace, for his battle to rid the earth of atomic weapons.

Mrs. Pauling was a human rights activist who was involved in different social movements, including women’s rights, racial equality, and world peace. She and her husband worked for nuclear disarmament, to check the proliferation of nuclear weapons, and to prevent the atmospheric testing of atomic bombs. Each year since her death in 1981, The Institutes has presented a peace lecture in her memory.

NASA
Dr. Ralph Pelligra, chief medical officer of NASA-Ames at Moffett Field, California, has been on The Institutes board of directors for many years and has served as chairman of the board. Dr. Pelligra and NASA have helped The Institutes staff to answer questions using their space-age technology in ways that technology has never been used before.

Dr. Ralph Pelligra’s centrifuge project in 1976 was followed by collaboration with The Institutes to establish normative respiratory data, a modified space helmet for underwater use, and a 1978 joint conclave in Palo Alto, California. By 1979, the united efforts of NASA and the Institutes had blossomed into a strong relationship that held great promise for the world’s brain-injured children and possibly all children.

In 1979, NASA’s immense engineering acumen, imagination, and technical skill focused upon two of the most stubborn problems faced by the Institutes’ hurt children: blindness and immobility. While stunning gains had already been made, the staff realized that these advances could be accelerated with the use of devices that gave the necessary stimulation with increased frequency, intensity, and duration.

Working closely with The Institutes staff, the NASA research team, headed by Herbert C. Vykukal, introduced a vehicle for initial crawling (VIC device) in February 1979. In action, the device resembled a hovercraft moving seemingly without friction over water. When a child made any crawling movement, the immediate positive feedback encourages repetition of the movement. The reduced friction allowed the child to achieve purposeful mobility.

Also in 1979, the Vision Project culminated in a device brought to the Institutes in March by Dr. Pelligra. It combined auditory stimulation synchronized with bright flashes of light, worn as a fully computerized apparatus containing a headset and goggles. The success of these projects consolidated the relationship between scientists and human developmentalists.

NASA and The Institutes planned future projects, and the relationship between scientists and human developmentalists was consolidated.

Adelle Davis
Adelle Davis, an author and nutritionist, shone a spotlight on the importance of good nutrition with her books, including Let’s Get Well and Let’s Have Healthy Children. With the assistance of Adele Davis, the staff of The Institutes organized a nutrition program specifically designed to help each child achieve optimum health. This program, which is carried out at home by the parents, has been effective in helping chronically ill children to become healthy and physiologically strong. The staff continues to modify the program based on current information, including awareness of food sensitivities and allergies.

Dr. Denise Malkowicz
Dr. Malkowicz is a neurologist specializes in the study of epilepsy. She researched and wrote the article “Rehabilitation of Cortical Visual Blindness,” which was published in the International Journal of Neuroscience. The technique of visual stimulation used to create vision has allowed blind children to progress to seeing and even reading. Dr. Malkowicz has also been involved in The Institutes work in biofeedback and neurofeedback.

Dr. Wayne Matson
Dr. Wayne Matson, a consultant in analytical chemistry, published the results of his study that showed many of the changes in body chemistry produced by The Institutes program of neurological organization. A particularly interesting finding from the pretreatment blood and urine samples was a high level of oxidative stress in the injured brain. This imbalance was often corrected by The Institutes program, which included masking.

Dr. Mihai Dimancescu
Dr. Mihai Dimancescu, a prominent neurosurgeon, updated the information in Dr. Edward LeWinn’s bookComa Arousal. With Glenn Doman and Drs. Wilkinson and Pelligra, he co-authored a paper on this subject [“The Effect of Intense Multisensory Stimulation on Coma Arousal and Recovery” (Neuropsychological Rehabilitation, 1993)]. Dr. Dimancescu has served on The Institutes board of directors and is currently the chairman of the board.

Dr. George Goodheart
In 1981 Dr. Jerold Morantz, an applied kinesiologist, became involved in The Institutes work with brain-injured children and began to teach The Institutes staff about AK. Shortly thereafter, Glenn Doman was invited to speak at the annual convention of AK practitioners. Dr. George Goodheart, the founder of applied kinesiology, spoke and taught effective techniques at the annual meeting of the World Organization for Human Potential at The Institutes. Dr. Walter Schmitt, a diplomate in neurology, became involved and an important member of the team whose focus is on the structure and function of the body.

 

by  on 18/02/2014

Cate Crawling, Talking, and A lot of Smiles!

Cate has had a great few months. Sorry it has been so long since I have written. She is now belly crawling on the flat floor without walls to help her! She is not yet meeting her distance goals of 300 feet/day but independently crawling is a great accomplishment. Her breathing has improved since we started her on the respiratory patterning machine and she has just said her first couplet, “hi daddy”! She is trying to communicate every day now. “The Law” or rules with consequences are working wonderfully. There is much less screaming in the house, car, and when we go out. Since she now knows what is expected of her and acts much better she is able to go more places and we have been able to get more program done with a lot of smiles! She loves to paint and has made some beautiful artwork, beautiful in my eyes.

Cate Coloring

Cate has been very healthy over the past 3 months but unfortunately she has had 2 short seizures. We now know that if we can catch the seizure within the first minute and begin her seizure protocol of masking, we can stop the seizure within 3 minutes each time. Ideally she won’t have any more but I feel like we are better prepared now. The next step is to get a companion dog trained in seizure alert (well this is my dream, hopefully some day).

Cate Smiling

This week Cate is halfway between visits to The Institutes for the Achievement of Human Potential, 3 months after our last visit and 3 months before we go back. (I would like to say that time has flown fast but I am not sure I can say that yet.) So for the mom it is report time! I have filled out Cate’s interim report including a history, sensory changes, nutrition journal, physical record sheet, and physical and intellectual goal sheets. Some highlights include:

  • Cate crawling about 100 feet each day
  • Cate standing in her VKE machine
  • 16 hours each day on her respiratory patterning machine (day and night)
  • Cate and Charlie learned 537 new words, 19 new books
  • Cate and Charlie learned 300 new bits of intelligence, 0-100 numbers, and 30 equations

I look forward to getting our feedback after sending in the report. I want to emphasize how much I appreciate that we have such a structured, efficient, and very effective program. The staff at The Institutes will carefully review the report and video, ask questions, and adjust Cate’s program and our execution. They are always available to answer questions.

Cate and Charlie Playing

Here is Cate’s interim video. We have now made 5 of these and it is great to look back and see how far she has come! Her crawling is at the end of the video if you want to see that only.

Thank you for following our story and supporting Cate and the rest of us!

Trip to IAHP – Summary of Lecture Series III

We have now been home for one and a half weeks from our trip to the Institutes for the Achievement of Human Potential (IAHP) in Philadelphia.  There is so much I can talk about but I will do my best to summarize.

Days 3-4: Lecture Series III

The parents spent about 11 hours each day (Tuesday and Wednesday) in the lecture hall learning more about our children and the resources there are to make significant progress. We were taught more about physical growth, intellectual growth, physiological growth, and social growth.

IAHP Auditorium

The gravity free and gravity assisted program are a new part of the physical growth program that we learned. With the use of a harness and surgical tubing, the kids will be able to partially experience a gravity free and assisted environment. When you have physical limitations, gravity is very difficult to work with. IAHP began working with NASA’s Ames Research Center in 1976 to develop this program. They have continued their relationship with NASA and have accomplished many projects together including the oxygen enrichment program. Dr. Ralph Pelligra, chief medical officer of the research center is still on the board of the IAHP. Cate will not start the anti and assisted gravity program yet but I expect she will start next time.

We had a review of the effect of food, chemicals and the environment on health, behavior and the brain and learned about applied kinesiology and how IAHP utilizes this tool to help the kids. There is a chiropractor and applied kinesiologist on staff at IAHP. We were taught how to do acupressure tapping for Cate during this session to relax her upper body tension. I will keep you posted on how it works!

Our first lecture on social growth was about The Law. It seems like common sense right… rules, consequences, and follow through. But when you have a very intelligent brain injured child it is easy to lose control of your house. Our house now has 3 laws posted on the wall: 1) No screaming 2) No throwing 3) No hitting and kicking.  The second two laws are more for Charlie.

The majority of the lecture time was about intellectual growth: joyousness and reading, auditory pathway, communication and language development. We learned about the impressive tool of facilitated communication, invented by Rosemary Crossley in Australia. We already use a choice board for Cate but this will take it to another level. Basically, without having verbal language or written language my child can learn to communicate very clearly and effectively using a word board and eventually a keyboard. We haven’t tried it yet and I think we will wait until she can read 1500-2000 words. Currently she knows 1000 words. Give us a few more months and we will be ready. This does not replace encouraging Cate to speak, but it will help to give her a voice until she speaks clearly. We also learned that all sounds are language, even if poor quality! Now we just have to learn how to interrupt the sounds. This is important to remember as Cate starts to make new sounds, she is currently practicing the letter “m”. I assume so she can say mom!

We got Cate’s new program and have slowly began. More to come!

My best IAHP friend! Jen is another intensive treatment mom. Her son Jacob and Cate are the same age. Visit her blog, http://www.defyingthediagnosis.com

Trip to IAHP- Day 2 Evaluation

Yesterday we arrived at the Institutes at 9am with Cate and spent the day playing with her friends, reading books, crawling on the floor, playing with new toys… oh yeah and Cate got a full neurological evaluation done.  They were very happy with Cate’s progress.  I sent in reports and videos but they were able to see and test her abilities. There was so much that happened but one thing that I was surprised and impressed with was her tactile competence. Her evaluator showed her a small jingle bell and a small toy elephant and told her what they were.  She mixed them up and put one in each of her hands without her seeing the objects. She asked her to let go of the bell and after about 10 seconds of thinking about it she opened the hand with the bell! She did this three times in a row with different objects.  Not only does she understand what the objects are and the question but she is able to hold on to the objects with assistance and let go of the correct one after feeling the objects.  We are so proud of her!  At home she practices hanging or holding on to my fingers but this is something we do not specifically work on at home. At the end of the week Cate will come back to the Institutes with us and we will get to learn her new program for the next 6 months. Today was a full day of lectures for parents.  We learned some great information.

I was so pre-occupied with Cate and the Institutes that I forgot to take pictures yesterday.  I will do better the rest of the week.

 

The IAHP

The IAHP

 

Trip to IAHP- Day 1 Travel

Yesterday we traveled from Louisville, Kentucky to Philadelphia, Pennsylvania for our intensive treatment visit at The Institutes for the Achievement of Human Potential. The flights went well but it was a long day. Cate did not want to sit in her car seat on the plane, no surprise. She is 2 now so we have to buy her a ticket. Overall she did very well for a day that started at 5am. We are staying with a very nice host family here. They train service dogs!  The house has 5 beautiful, well behaved labs. We are at the Institutes today. I will post an update after the day is over but so far the day is going great!

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Cate hanging out on the floor at the airport during our 3 hour layover.

All About Charlie

Charlie with shades September 2014

Charlie is our wonderful, spunky, loving, stubborn, and beautiful daughter.  She and Cate are identical twin sisters. I spent the morning with only Charlie today on our adventure of our gymnastics class.  Charlie has been very difficult in class so far and last week I tried a new tactic of timeouts every time she screamed at me.  Well, one warning then 2 minute timeout. We spent almost half of our time in timeout last week but it paid off! This week she was great!!  I was so proud of her.  Only a few small meltdowns and 3 timeouts.  I was pretty picky with her. She is the type of personality that if you give an inch she WILL take a mile:). Everyone in class, including her teacher were very surprised and happy to have less screaming.

Charlie with blanket August 2014

She is really growing up and becoming more independent. I think this week it has finally hit me that she is no longer a baby. Although she still wants her momma throughout the day. We are not taking her to Philadelphia this trip so we will be apart for 7 days. This is not going to be good for me but I am sure she will be fine. We will be facetiming (is that a verb now?) everyday and talking on the phone but it will still be very hard.

Charlie is so good with Cate, other kids and animals. She wants to be everyones friend. Even strangers at the grocery store she yells “hi” to. Charlie likes to talk very loud whether she is happy or sad. She has tried to give all the kids in her gymnastics class a hug and yells “no, no, no” when they run away from her. She gives Cate hugs and loves to pat her on her back just like mom and dad do. She is now giving the dogs kisses and gently pets them. She also loves horses! I believe she will grow up to be a very caring and nurturing women. I suppose you can think of it as some positive when having a sibling with a disability, it builds character even at the age of 2!

Mom and Charlie July 2014