Archives for July 2009

The Gypsy Life

I have exactlyt 3 minutes while Nathan watches a bit of Cars on YouTube and thought I’d write a quick update.  Nathan and I are having the time of our lives.  I’m enjoying the full-time mommyhood experience to no end – this is only the 2nd time that Nathan and I have been by ourselvces for a substantial period of time and it’s been WONDERFUL.  We’ve always had help taking care of Nathan and I am sincerely happy that I now get to take care of him by myself.  The timing is perfect. 

Both of us have a bit of gypsy energy and we love the whole idea of travelling around, living out of a suitcase, being out and about all day.   It’s just so cool to see how he’s thriving by the experience of having people around him all day!

The retreat has been FABULOUS!  He’s been happy during all the sessions because there are lots of children around.  I’m learning about acceptance and about ways of maintaining a peaceful mind.  I realize more and more what this journey with Nathan is all about and I am grateful for him every day.

I was afraid to take this trip with him by myself but so far it’s been one of the best things we’ve done together!

We’re doing great!

I just wanted to write a quick post to say hi and we’re doing great!  We made it to England without any misshaps.  Nathan’s been so happy and easy going and we’re enjoying each other’s company.  Everyone’s stepped in and helped and we’ve been well taken care of!

One Fabulous Dream

Last night I dreamt that Nathan could not just walk – he was running!  Owen and I were with him on a hike, and at one point, I heard Owen calling my name.  I looked…and I saw Nathan running up a hill!  I couldn’t believe my eyes!  I was like OH MY GOD Owen, am I seeing what I think I’m seeing?  How did you do that?  He said, I don’t know, I just put him down, and he ran!  I was screaming, jumping, crying!  Then I grabbed my camera and filmed him.  My last thought in this dream was like, THat is so like Nathan.  He didn’t just start walking, he started running.  Then the dream ended.

And on that note I say bye to you for 2 weeks.  Nathan and I are going to a meditation retreat together.  We wish you the best!

Triumphs and Sadness

Today I heard that the trial period for Nathan’s Dynavox has been extended to 3 months. This is a great triumph because it will give us the extra time he needs for us to teach him how to use it so proficiently that the funding will not be denied. This has been a long hard battle and I am glad to say that we are one step closer.

On the heel of this triumph came the terrible news that Nathan’s Mary Poppins resigned. I can’t even begin to describe how devastated I am.

I linked to a post that Kate wrote a few days ago but not knowing what it’s like to have a child like Nathan. Well, it’s even worse when someone knows what it’s like and chooses to leave.

I’ve decided not to hire anyone and just do the best I can with him. Many things may not get done, I may not have the time to do all the paperwork and research that I’m accustomed to…but I just can’t handle training someone else and then having them leave. So Nathan will have to settle for the best I can offer him with what I have.

Onwards and upwards.

Like to drive fast?

I do. I’m always late so I’m always racing to my destinations. Today I was on Youtube and ran into the video below. You bet it made me think. I hope it does you too, if you like to drive fast.

Nathan’s IEP

We had Nathan’s IEP meeting yesterday. I don’t know how it went so I’m not going to write more about it just yet. I’m a little bit confused about it all and don’t want to think about it for a few days – I’m just letting it cook in the back of my mind.

Owen and I are going away for the weekend SOLO! Nathan is staying with grandma. We are leaving in a few minutes so I just wanted to say, have a great weekend!

Report for Nathan’s IEP meeting

I wrote this report for Nathan’s IEP folder and thought I’d share it here.

Parent Impressions

Nathan D. Andrew is a miracle. He has a severe and rare brain malformation. His chances of survival past birth were 3%, and past 1 year old, 3%. Additionally, we were told that if he survived, he would be a vegetable and have no cognitive or physical functions.

Instead, Nathan is a healthy, happy 3 year old that is typical in his emotional, cognitive, and social development. He is the happiest little boy that most people have ever met.

In many ways he is just like any other little boy. He likes playing with cars and listening to music. His favorite activities are swimming and reading books. He LOVES to turn the pages of books. He enjoys playing musical instruments. He thrives when other children are around and throws back his head with laughter at the antics of little kids – at their movements, sounds, and how they play. He manipulates mom and dad when he doesn’t want to do things and knows exactly how to best manipulate each parent separately. He has a group of 5 friends who know and love him, and cousins that understand he is different and enjoys playing with him in different ways. He loves having things in his mouth and can often be found sucking his thumb.

He communicates with eye gaze and by making different sounds. When he wakes up in the morning, he babbles and screeches, without crying, when he is ready to be picked up from bed. If he is watching TV on the couch and his TV show finishes, he screeches so we can hear him from anywhere in the house and change the channel. If he is hungry or thirsty and sees someone eating or drinking, he looks at the food or drink and then starts kicking or smiling and looking at us so we know what he wants. We ask him if he’s hungry or thirsty and if he smiles or screeches we know he is, if he looks away or his expression doesn’t change, we know he is not. If he is full or doesn’t want to eat any more, he closes his lips and/or turns his head away. When he is happy he glows and he wears and expression of thorough contentment. When he is tired or cranky or not feeling well, he gets whiney and lets us know, one way or another.

The main way in that he is different from other children is in his gross, fine, and oral motor skills. He suffers from severe quadriplegic cerebral palsy. He experiences fluctuating muscle tone, so his trunk and neck are hypotonic, and his extremities are hypertonic. He is not constantly hypertonic – he gets tight with function. If he wants to reach out, his arms get tight and draw inwards towards his body. If he tries to step, his legs get tight and he scissors when trying to walk. He has difficulty holding his head up and has minimal weight bearing capacity and very minimal balance. He is currently not mobile.

Despite these limitations, Nathan is a very active and curious little boy. He understands everything about the world around him. He anticipates activities. He recognizes places and people – even those he doesn’t often see. He doesn’t always cooperate in physical therapy but is learning that hard work is just a part of life. He is intelligent and has learned many things that were never expected of him, such as body parts, colors, and actions.

He is a delightful, constantly happy little boy that teaches others about joy, strength and perseverance.
Communication

Nathan communicates with eye gaze. He will look at what he wants. He is learning to hold his gaze longer and to look back at his communication partner to signify his choice. He has different sounds to express different wants and needs. A screech means he needs attention and that he is happy. Babbling means he is happy and wants to talk. MO means more and Elmo and mom. Looking away or making pouty face or not responding to a question means he is not interested. Usually you can tell by looking in his eyes what he needs. Anyone that is perceptive can tell his needs by analyzing his sounds, movements, and by listening to their intuition – he has a way of putting his needs in people’s minds.

Physical Development

Nathan is now able to bear weight on his legs for 5 seconds to 5 minutes at a time. He can squat to stand with balance support. He can hold his head from falling backwards when leaning back. He can lift his head up when in supine. He can roll from prone to supine. He can hold his head up when in prone if properly stimulated. In the pool, we can hold him almost horizontally and he will hold his head up for extended periods of time. He can sit up and hold his trunk for a few seconds at a time, when he wants to. He is learning how to balance and has improved considerably in the last couple of months. He can prop and side sit for a few minutes at a time. He is able to take steps when given max assist, but has severe scissoring. His head control is improving; he is able to hold it up when excited, but if he is tired or disinterested, he has little head control. He is not mobile and is not able to crawl or roll to get around.

Fine motor development

Nathan is now able to hold objects and to move his right hand towards desired objects. He is very good at grabbing daddy’s face and pulling mommy’s hair. He is able to turn pages in books with assistance. He can shake a rattle and other musical instruments and can play the piano. He has difficulty opening his hands when an object is placed in front of him, but with enough time and desire, he can get his hand to it and sometimes open it to grab the object. He has trouble letting go of objects when asked. He keeps his hands fisted most of the time. He can hold on to a tuning fork and move it to strike another tuning fork wherever it is placed. He enjoys coloring and painting and using his hands creatively. He can hit a switch placed in front of him consistently. His right hand is much stronger than his left hand. When in side or prop sitting, he can support himself with one hand while playing with the other hand.

Cognitive development

Nathan understands everything about the world around him. He knows who his family is. He understands many words and is understanding more words every day. He knows things like places (park, mall, store, best buy, etc) friends (he knows who Presley, Dylan, Gabriel and others); he knows when we offer to let him watch TV. He gets upset as soon as we park outside of the doctor’s office and screeches the moment we turn into his grandma’s complex. He understands cause and effect and object permanence. His favorite game lately is to go look for hidden treasures in the pool filter – he reaches in and pulls out objects that we hide there. He gets angry as soon as he sees the hart walker and the word MEDEK throws him into fits of anger. He identifies pictures with animals, things that go, and other objects. He is a captive audience when I read to him in Spanish and can now listen happily to stories that are about 10 pages and mostly words, no pictures. He is able to make choices using eye gaze and, if properly positioned, using his hands. He is working on matching pictures to objects and other more complex skills.

Social Skills

Nathan LOVES being around other children. Having other kids around sends him into a state of instant bliss. It is rare not to hear him laughing or to see him smiling when other children are around. He enjoys watching other kids play and wants to join into their play activities. At the park, he leans towards the swings and slides and wants to go where other kids are go, which he indicates by eye gaze and sounds. He loves playing in the sandbox with other children and engaging in circle time and singing with others. He tries to stand up and hold himself standing when other kids are around. Also, his head and trunk control improve considerably when surrounded by other children. He has not learned how to take turns and has not learned how to communicate and play directly with other children. If they hand him a toy he cannot grab it, and does not have any way of interacting directly with other kids other than to laugh and/or smile at them.

Behavior

Nathan is generally a happy, easy-going child. If he is healthy, well-fed, well watered, and entertained, he is happy and smiley. However, Nathan is quite spoiled. Because of all of the medical issues that he faced in early life, he was cuddled a lot and held most of the time. He was not forced to do anything against his will. As he grew older he came to expect this so it is now quite difficult to get him to do things he doesn’t want to do. For example, he strongly dislikes being on his belly on the floor. If placed on his belly he will instantly start whining. If he is not picked up within a short period of time, he will start crying. He will not stop crying until his desire to be picked up is met – even if it takes 2 hours. Because of his physical limitations, he has never been disciplined. He is quite manipulative and skilled at getting his way. His inability to communicate often leads him to quick frustration which leads him to whining or crying. If he is doing activities that he likes, he is very happy and easy going. But if asked to follow instructions or do something he doesn’t to do, he resists strongly.

Conclusion

Nathan is a child with endless potential. His brain has showed amazing capacity for growth, plasticity and regeneration. His occipital cortex is missing, yet he can see. His brain is severely malformed, yet he is able to understand so much of the world and is gaining conscious control over his body.

This potential has to be harnessed by continued stimulation and intense repetitions. Frequency, intensity, and duration are key words when working with Nathan. He needs to repeat something hundreds of times to learn it, but if given enough time and repetitions, he will learn it.

We believe Nathan can gain many more skills if given a chance. As his parents, we are strongly committed to giving Nathan the best quality of life possible. If he can learn, we can stimulate. We do not accept any limitations placed on him by his diagnosis or by the Western medical framework.

We believe that Nathan is a very special child who is in this world to teach many lessons…lessons about courage, love, acceptance, and self-improvement. This is a child who has defied endless and immeasurable odds, and will continue to do so throughout his life.

We beg you to help him so he may continue to progress and develop. Thank you.

Current Rehabilitation Approach

I’ve had a few people contacting me about Nathan and what we’re doing with him so I thought it might be time for another “Approach” post.

Here’s our current approach towards Nathan’s development:

Overview

We believe that to give Nathan as many opportunities for a good quality of life, we need to help him heal from the inside via the foods and supplements we give him, spiritually by giving him a stable rhythm and cognitive stimulation, and physically by keeping him active and having him on an intensive physical therapy program.

Nutrition and digestion are strongly connected with brain health and development. The brain needs lots of nutrients to develop and for these nutrients to reach his brain he needs a good diet and supplements.

Rhythm helps in many ways. It gives him stability and confidence. It engages him in many sensory activities. It helps with behavioral issues – if he knows what happens every day, what comes first, what follows, etc he will be more willing to engage. For example, since he knows his physical therapy is followed by a splash in the pool, he works harder in physical therapy. We also keep his mind engaged with stories and crafts etc.

Exercises is essential for the health of the body. Physical therapy and swimming keep him active and improves his circulation and strength. Additionally, we have learned that 90% of brain growth comes from proprioceptive stimuli – movement and vestibular stimulation. Thereore the cornerstone of his program is CME medek, swimming and swinging.

By making sure we are supporting him in all of these ways, we give him the chance to stay physically healthy, emotionally and spiritually happy, and in a path towards development!

Diet

Nathan is on a gluten casein free diet. He does not eat anything containing wheat or anything containing dairy. Mostly he eats things like grains (millet, quinoa, amarinth, brown rice), mixed with a protein (fish, chicken, red meat) and lots of vegetables (every vegetable we can find)! We try to feed him organic foods as much as possible. We keep him away from sugar as much as possible. If he eats sugar, it is something we baked and is gluten casein free.

Supplements

This is his current list of supplements:

– B6 from Metabolics
– Combocillus
– European Walnut
– NADPH
– Fig Tree
– IH Formula
– Flax seeds
– Manuka Honey
– Cat Claw
– Fish Oil
– Rutavite
– Pituitrophen
– Qantum Nerve Complex
– Drenamin
– Garlic
– Neurolink

If you would like any info about any of these supplements, let me know and I can figure out the brand name for each. They are all very very very high quality and most are imported from England.

Chinese Herbs

Nathan also takes a Chinese tea made specifically for him by a Korean doctor. He is an acupuncturist and herbalist. He reads Nathan’s pulse and then makes a concoction specifically for him.

He also gave Nathan a super super super special formula that we have been giving him for a few months now. The primary ingredient in that is musk.

We also see Dr. Kim every so often for acupuncture.

Homeopathic

Nathan takes G-therapy, from a Homeopathic doctor in India. It helps to create new synaptic connections and dendritic growth.

Chiropractic / Biochemist

Nathan sees a Chiropractor who is also a Biochemist and a Kinesiologist. She muscle tests him to see what supplements she needs. We bring every treatment / supplement that we find to her, and she muscle tests him to see how much he needs, and how often, and whether or not it is even appropriate for him. This method allows his body to tell us what it needs, instead of us having to guess. Her premise is that we only supply what the body cannot produce on its own. For example, Vitamin C is something that many people take separately, but we do not give it to Nathan. Instead, we try to give his body all the tools to make all of the chemicals that it needs on its own. Every time a supplement is introduced, the body needs to process it, and make use up other chemicals and minerals etc to process it, so we try to bring the body to homeostasis so it helps itself. She also gives him chiropractic adjustments.

Osteopath

Nathan sees an Osteopath at least once a month. He does cranial adjustments and checks to see if there is any tightness or obstructions in the flow of his energy or CSF and other fluids.

Our osteopath is also an anthroposophic doctor and recently prescribed a few oils: Chamomile for his bath, and Nicotiana and something else that I forgot to wrap around his extremities. This is very new so I will report more on this later.

Epsom / Bath Salts

Nathan takes baths with epsom salts that are also aromatherapy. We use PlantLife Bath salts. These are very good for many aspects of his health.

Rhythm / Education

Nathan’s rhythm and education is currently formed on a Waldorf foundation.

In a nutshell, Waldorf education is all about teaching the children skills that are developmentally appropriate. For example, they do not introduce intellectual concepts to young children, as the early years are all about imagination and play. They also promote independence and spiritual development in children. There is a LOT to waldorf so I won’t talk about it here, you can visit the link above or look on the internet.

Based on this developmental aproach, we have created a Rhythm / Routine for Nathan’s day. It looks something like this:

Morning Song & Massage
Breakfast
Nature Walk
CME Medek
Circle Time
Snack
Domestic Arts / Crafts
Swimming at home pool
Lunch
Story / Puppet show
Nap
Snack
Circle Time
CME Medek
Out of home activities (play dates, park, pool, visit cousins, shopping, errands)
Dinner
Bath and Massage
Nightime Story & Song
Bedtime

I am going to try to create a video with snippets of his day in the future so you can see what it all looks like.

This includes a lot of sensory stimulation – he touches things, smells things, hears things, etc. It also contains a lot of proprioception and movement.

He also receives child development therapy where he is learning things such as: colors, actions, objects, if/then, to recognize his name in writing, and many other things.

Physical Therapy

Currenly Nathan’s physical therapy is comprised by a home program called CME Medek.

We do 2 45 minute sessions at home every day. We also fly for Nathan to see CME Medek specialists every 4-8 weeks.

This therapy consists for various exercises designed to remove support and instigate spontaneous responses which treat his brain. For example, we balance him on a board in space to make him balance himself and hold up his trunk. There are various posts and videos about Medek on this site if you wish to learn more about it.

Speech Therapy

Currently, the primary speech therapy goal is to teach Nathan how to use his eye gaze to communicate. We are working on getting him a Dynavox Vmax with Eyemax. This will read his retina so he can make choices on a computer screen. THis will be used initially for him to communicate his needs and to make selections between toys, books, etc. Eventually this will teach him literacy and become a more complex method of communication.

We also work on oral motor skills. We do Beckman exercises before ever meal. We also use a Z-vibe and a few other oral motor tools to help improve his tongue lateralization and lip closure.

We are going to be seeing a specialist in Venezuela in the future to help with his communication skills.

Occupational Therapy

Nathan sees an occupational therapist to help with his fine motor skills. She typically places him on his side on prop sitting to teach him to use his hands. He can now hold objects for extended periods but is still learning how to release objects by choice.

Other Therapies

Nathan has done hippotherapy since he was 1 year old. He is currently taking a small break from it because of various interruptions in our schedule, but will soon be resuming regular hippotherapy lessons.

He also receives aquatic therapy twice a week. The mostly have him on his belly in the water to get him to kick and to lift his head up. If he doesn’t hold his head, his head falls into the water, so he has learned to hold it up in an almost horizontal position. The focus of this therapy is mostly exercise and movement, but also socialization, as there are other children in the water at the same time. It is a therapeutic pool at about 90 degrees.

Equipment

Currently, we are using the following pieces of equipment:

Ormesa Bug wheelchair for feeding and transportation
Kidwalk gait trainer for standing and walking
Hart Walker for standing and walking
Childrite seat for seating on the ground
Corner chair for seating on the ground
Neck collar to hold his head while using the computer
ErgoBaby and Baby Bjorn to hold him in while on quick trips
Danmar collar so he can float independently in the water
Wingbo for swinging and vestibular stimulation

Western Doctors

Nathan sees a general pediatrician who specializes in children with special needs. She is our go-to-guy for any general illness and medical testing. She is smarter than any neurologist, neurosurgeon, orthopedic, etc. We go to her first before anything and double check any recommendations from other doctors with her. She is Nathan’s primary doctor.

He also sees: Neurologist, Neurosurgeon, Gastroenterologist, Pediatric Opthalmologist, Orthopedist, Orthotist.

Western Medicines

Currenly, the only prescription drug that Nathan is on is Prevacid for reflux or GERD.

Things we wish to incorporate in the future

Stem cells in China if/when funds permit.

Daily ABR sessions. This helps with his physical structure. It is a passive exercise so we have not had time to incorporate it into his routine. However, we hope to find time to incorporate it in the future.

Speech therapy and communication. This will be a major focus for us now that we have a strong physical therapy and biomedical protocol in place. Now we have to help him learn to talk and communicate!

Notes from the June 27th Lecture By Dr Hiromi Shinya

A good friend sent me these notes. I thought I would share them here as they contain fabulous information.

Notes from the June 27th Lecture By Dr Hiromi Shinya

Hiromi Shinya M.D. is the Chief of Surgical Endoscopy at Beth Israel Medical center and Clinical professor of Surgery at Albert Einstein College of Medicine. He is a pioneer of the Colonscopy and considered the leading Gastro-Enterologist in the world. He spends 6 months of the year in Japan and 6 months in New York.
So how would this icon of the medical world start this much anticipated lecture?

Well he surprised all of us!

He started the lecture by playing his harmonica. And with that we all knew that he was no ordinary doctor!
Two other ways I which he differs from the traditional medical doctor:

1) He does not like using pharmaceutical drugs. He suggests them only when absolutely necessary. In fact he used to test them on himself before prescribing them for his patients. He has since stopped this practice after taking a common medication prescribed for erectile dysfunction and thinking he was going to die.

2) He views 90% of all disease as lifestyle related. He advocates lifestyle change, attacking the root cause of disease, as the main focus and therapy for his clients.

Over the course of his 40 year career he has seen many changes in health in his home country of Japan. In 1960, there were only 400 cases of breast cancer and prostate cancer reported in the entire country. Although the Japanese are still considered the healthiest people on the planet their health started to change drastically after the introduction of milk into school lunches.

Japanese have 10-15 times more stomach cancer than Americans, He feels strongly that this is due to the tannic acid in tea.

Americans have 10-15 times more colon cancer than the Japanese, primarily caused by diet.
If a person eats a diet high in meats, dairy products, cheese, yogurt, white rice and refined grains it causes the colon muscular layer to become very thick, creating spasms and actually shortens the colon. He says that a high fiber diet can actually make your colon up to 2 ft longer. He stated that a persons colon is a good indication of what is happening to your arteries also. As the colon goes, so do your arteries.
We do not inherit disease from our parents, we inherit their dietary habits and all the health problems that come with it. Good habits will overcome bad genes.

Shinya believes that there is a direct relationship between dietary practices and health problems. This is not a new idea, especially among Natural Health practitioners and enthusiasts. But is sure refreshing to here a Medical Doctor voice the same philosophy and have 40 years of evidence to stand on.
How has Dr Shinya arrived at his theory of health and diet? Direct physical evidence!

As a gastro-intestinal specialist he has carried out over 370,000 colonoscopic procedures. In other words, he has inserted a camera into over a quarter million people’s colon and filmed the results. What results? The results of their dietary practices!

For over 40 years Dr Shinya has carried out his colonoscopic procedures and gathered dietary data from his patients. He finds out what you eat and then looks at the results. Based on this physical evidence he has formulated his ideas on health and the diet for the future. A diet that will prevent heart disease, cure cancer and stop type 2 diabetes. It is pretty hard to argue with this type of evidence.

He showed a number of slides showing the interior lining of a patient’s colon, the toxic accumulations, their health concerns and he shared the dietary data he got from that person.

Shinya advocates what he thinks is the best diet based on his findings. He suggests a two-fold change for all of his clients:

1) Eating a primarily vegan diet. Natural foods cure everything because the body reponds to nature.
2) Drinking alkaline, anti-oxidant water, Kangen Water.

Here are Dr Shinya’s diet suggestions:

1) Eat 85-90% Plant Based Foods and Ocean Sea Vegetables ( Wakame, Nori etc)
a. 50% whole grain, unrefined, organic grains, cereals and beans. His staple food is a mixture of 5 grains (Brown Rice + millet, quinoa, amaranth, whole oats, buckwheat etc.
b. 30% Vegetables. The more raw the better because of the enzyme factor.
c. 10-15% Fruits, seeds and nuts.

2) 10-15% Animal based protein – no more than 3-4 oz a day. Preferably fish. He said that he eats meat a handful of times per year. Meats from animals that have a higher body temperature than that of humans should not be consumed because the fat solidifies on our body and causes a host of health problems.

Human body Temp – 98.6 F
Cow body temp. – 102-104 F
Bird body temp – 105-108 F

His basic dietary routine morning noon and night is:
O
ne hour before a meal: 2-3 glasses of water
30 minutes before a meal: Fresh Fruit
Then the meal based on the above suggestions

The Two Worst Lifestyle Practices:

1) Smoking – Adds 20 years to your age
2) Alcohol Consumption

The Two Worst Dietary Habits:

1) Consuming Meats
– Daily consumption of beef will inevitably produce prostate problems and cancer.
– Vegetable proteins freeze cancer cells.
– Meat protein and especially casein (protein from milk) stimulate and fertilize cancer growth.

2) Consuming Milk Products
– Casein is worse than meat to stimulate and fertilize cancer growth.
– Milk cows are artificially inseminated to stimulate milk production. The increased hormones in milk cause breast cancer, as well as prostate and infertility problems.
– The only animal that drinks milk of another animal is the stupid human!
– Everyone is lactose intolerant!

Limit or Avoid:
– Dairy Products, tea and coffee, sweets and sugars, nicotine, alcohol, chocolate, regular table salt.
– Refined Fats and oils – all oils are 100% oxidized fats loaded with free radicals. Get your fats and oil from natural unrefined sources – whole foods.

Other dietary recommendations:
– Stop eating 4-5 hours before bedtime
– Chew every mouthful 30-50 times
– Eat fruit between meals
– Drink 2-3 cups of water 60-90 minutes before a meal
– Eat fruit 30 mins before a meal
– Eat fermented foods
– Enzyme supplements
– Be disciplined – You are what you eat!

Drink Kangen Water!
It is the only water he mentions in his book. Dr Shinya has been recommending Kangen water for 10 years. You never know what you are buying when you buy a bottled water. You do not know the source and you have no idea of the contamination from the plastic. Poland Spring water was found to have formaldehyde in 50% of the bottles.

Why he recommends Kangen Water:

1) It has strong reduction power. Capable of eliminating free radicals through anti-oxidation.
2) Free of substances harmful to the human body (Purified)
3) Has small water clusters ( Hydrating)
4) Contains appropriate balance of minerals, calcium, magnesium, potassium and sodium
5) It is alkaline to help keep your body at an optimum pH level

Drink minimum 6-10 cups of water per day
Drink 1-3 cups upon rising in the morning
Drink 2-3 cups 60 minutes before a meal

The cause of all disease and aging: Lack of enzymes and water
Sufficient water intake improves the 5 Flows of the Body:

1) Blood/Lymph Flow
2) Gastro-Intestinal Flow
3) Urinary Flow
4) Respiratory/Air Flow
5) Internal Energy (Chi) Flow

You will never die from over drinking water. If you drink large quantities of water, put a pinch of salt on your tongue and drink some more.

Dr Shinya says that if you start with his diet recommendations when you are 40-45 years of age that the condition of your colon can return to that of a baby. If you wait until you are 65-70 years old it is almost impossible. When do you want to start change? Now!

How effective have his suggestions been for the health of his patients?

He boasts a 0% reoccurrence of cancer in his patients that adopt his program. This is for patients with up to stage 3 cancers that have not metastasized. 0% reoccurrence!

Dr Shinya’s 7 Keys for Good Health!

1) A Good Diet
2) Good Water
3) Regular Elimination
4) Moderate Exercise
5) Adequate rest
6) Deep Breathing and Meditation
7) Joy and Love

The Price of a Healthy Life is Much Cheaper than Getting Sick!
If you have not read Dr. Hiromi Shinya’s book “The Enzyme Factor” I highly recommend it.

You’ll never know what it’s like until…

Kate, Gavin’s mom, wrote this beautiful post today and I just had to share it.

How in the world did we get here. – Monday, July 13th

It brought tears to my eyes. Because it is so true. Everything. I couldn’t have said it better, or differently.

Thank you Kate, for saying it out loud.

The boy with half a brain

We were at a party this weekend and a little boy came up to me and asked, “Is that the little boy with half a brain?” I was proud to announce that yes, this is the little boy with half a brain. Except now we know that he has a bit more than half a brain. Way to go Nathan!

And I thought…hmmmm…what a great title for a book.

Lately I have been in contact with several mothers who have young brain injured children. It made me remember those early days where you still don’t know enough and you are handed this child that you want with all your heart to help but don’t know how. My heart goes out to them, I wish I could fly around the world and support them, listen to them, share some of our experiences. I wish they didn’t have to go through all of the things we went through. That, through our journey, we could make things better for them, and their kids. But of course that is not realistic.

Which has made me return to my idea of a book. Maybe instead of writing a biographical book, I should write a more fact-based book about what we’ve learned. Present a list of alternative therapies, talk about brain plasticity, talk about different toys, technology, how to deal with state and other agencies.

In any case…I’m proud to be the mother of this boy with half a brain. With just a little more than half a brain, he has accomplished so much! What he lacks in brains he makes up in spirit (and in looks, of course!).

So what do you think of “The boy with half a brain” as a title for a book?

Programmable Shunts

I realize I’m always talking about Nathan’s shunt but until today I didn’t even know what type of shunt he had, or anything about how it works. So I did a little research and found a cool video:

Codman programmable valve

Just in case anyone has any curiosity about what a shunt is, what it looks like, and/or how it works.

Apparently Nathan got a really good one, as it has 18 different settings and is very adjustable.

Nathan’s MRI and Miracles

Nathan had an MRI this morning. It was requested by his doctor for several reasons: 1. to check the status of the shunt and look for signs of over and under-drainage. 2. to check for other potential problems that weren’t seen at the time of the first MRI due to hydrocephalus. 3. to check for brain damage from the hydrocephalus and meningitis. 4. to see how his brain has developed over time

It was a terrifying experience as Nathan hasn’t undergone any surgeries or sedation since he was 5 months old.

The good news – everything went great! We arrived at 6:30 am on the dot, and Nathan was in the prep room by 7 am. They got the IV in on the first try, which is virtually unprecedented. By 7:30 the anesthesiologist came in and gave him the IV sedative. I was holding Nathan in my arms and talking to him when the IV went in. Within SECONDS he was asleep. It was incredible.

The procedure lasted 45 min’s, at which time they called me so I could be there when he woke up. By the time he opened his eyes, I was right by his side. The nurse said they don’t remember what happened. So in his mind, I never went away. The 45 min procedure never happened and he probably thought I was holding him the whole time. I gave him juice and we sang songs while he fully regained consciousness. Then within the hour he was able to eat his breakfast.

We then had to wait about 3 hours because the neurosurgeon had to reprogram the shunt. Because the MRI is a big magnet, it mess up the shunt settings. So they have this little tool, it almost looks like a circular ruler, that they place over his head where the shunt is. Then they have to click a button, and zip, the shunt gets reprogrammed to its ideal setting. It was amazing. Unfortunately they didn’t have the right tool so we had to wait 3 hours for them to find it. But Nathan ate, chilled, watched TV, and was completely happy the whole time.

We got home at about 12 and it was almost as if nothing had happened. He had a long nap and was his normal, happy self all afternoon.

I picked up the disc from the records department and by 3 pm was on the phone to his neurologist. Here are the findings:

1. His brain has expanded considerably since the shunt was placed

This is from Nov 07

This was about as close as I could find in terms of view so you could compare apples to apples. It’s miraculous how much his brain has grown and expanded. It’s amazing!

2. He has had no further injuries to his brain. There is no evidence of bleeds or any further complications other than the original malformation.

3. The cyst in his occipital cortex is now much reduced in size:

Nov 07

The white part in the middle is all empty – that’s the cyst. It was almost all cyst. Now it’s just confined to that one portion of his skull.

This is about as wide as it gets now:

I thought it looked like an error with the MRI machine as it’s such a perfect little hole, but it turns out that the cyst is just not fully gone.

I posted all of the MRI photos if you want to look at the comparisons:

Old and New MRI’s

If you ask me, I think this shows that miracles can, and do, happen. The expansion and regeneration of his brain is amazing! It gives me hope.

Thank you so much for keeping Mr. Nathan in your prayers – they worked! Everything went so well! THANK YOU!

Roadblocks

We hit a major roadblock today. We had Nathan’s assessment at CART for the dynavox. It was horrifying.

The speech therapist spent the entire time introducing Nathan to new concepts and methods that we’ve never used before, then commenting on his inability to perform the requested tasks. We spent several weeks using the Dynavox in a certain way, she then requested him to use the Dynavox in a way that he’s never done before. Then she had the gall to imply that Nathan doesn’t have the cognitive function to use the Dynavox effectively.

It was infuriating.

I don’t want to get into all the details as I have to get up in a few hours for Nathan’s MRI tommorrow morning. But believe me I gave her a piece of my mind. Unfortunately she was just as stubborn as me and we ended up at an impasse. She is going to deal with the Dynavox people to extend the trial period to 3 months. During that period she will give us “homework” that Nathan has to master. When we have the follow-up appointment, he has to demonstrate consistent functional use of the device for her to approve of the recommendation.

It’s just so hard because I know that Nathan needs this type of device if he is going to have any hopes of communicating. I just wish it didn’t have to be so hard.

Matching…sequencing…

After writing the previous post “Poor Nathan”, I grabbed Nathan and we laid in the hammock for a little while and said our evening prayers. Then I read him a story and put him to bed. I was still keyed up so I took a nice bath but still my mind couldn’t stop spinning. So here I am.

As I was saying in my previous post, I am the first to understand that Nathan is different. No, he shouldn’t be considered a “poor” child – he is the richest child I know. He is wealthy in love, patience, expression, inner hearmony, inner beauty, resources. But at the same time I do know that Nathan has limitations and that his life will never be “typical”.

So although I announced here that I will not send Nathan to the special needs school, I have to admit I’ve been having doubts. Am I doing the right thing? Perhaps it would be best for him to be in that sort of environment? Perhaps he really does need to learn matching, sequencing, and other such skills that they would teach him at the special needs school?

But I’ve continued to think and I have to ask here…so what if Nathan learns his animals? So what if he learns matching? So what if he learns sequencing? I was reading another child’s IEP who is similar to Nathan and checking out his educational program and IEP goals. They had things in there like – will learn to take turns with other kids. Will recognize the letters of his name. Will be able to match objects with their images. All of these things seem very basic, right? And essential?

But are they really? Really really? I already know Nathan is not meant to be a neuroscientist. I already know Nathan will probably not be a computer engineer, or a bus boy, or a realtor, or a professor. Don’t limit him! you maybe thinking. Perhaps he WILL be one of those things, if given the chance. Perhaps he will be one of those people who write books using augmentative communication devices. And yes, I know it’s a possibility.

But more than all that, I know in my heart of hearts that Nathan is here on a spiritual journey. I believe Nathan’s presence in this earth has a different meaning. I believe he is here to teach others about acceptance. About unconditional love. About beauty and gratitude. About giving.

There are enough computer scientists, lawyers, professors, musicians, realtors, bus boys in this world. But how many truly happy, truly accpeting, truly compassionate, truly empathetic people do you know? Do you know an abundance of people who change people’s lives by their simple existence? Do you know people who, with every breath they take, teach about the power of a loving heart, about courage, about facing and overcoming limitations?

If I could write into his IEP things like: Nathan will experience the beauty of nature 3 times every day. Nathan will feel truly loved and accepted every moment of his day. Nathan will learn to value his differences. Nathan will learn to enjoy the rhythm of his heart. Nathan will delight in hearing beautiful music, smelling beautiful things, touching beautiful textures. Those are the things that matter to me for Nathan’s education. What I want for Nathan, above and beyond anything else, is to have a healthy sense of self. To love himself, to love others. To deepen his patience, gratitude. To be loving and empathetic towards others. Those are the things that he needs to be successful in life. And those are not things that are taught at his special needs schools.

They ARE taught at his Waldorf school. That’s what Waldorf education is all about – feeding kids’ heart and soul. They teach and show by example things like love, support, gratitude.

So yes, Nathan is different. No, he is not to be pitied. No, he does not need to learn the alphabet (just yet), or matching, or sequencing. Of course, as he gets much older, we can offer him these objects of knowledge and maybe he will accept them, maybe he won’t. But for now, while he is 3 years old, I am most interested in feeding his heart and soul.

And it’s not just because of Nathan’s special needs. If I had another, typical child – I would also send him to the Waldorf school.

Okay, maybe now I can go to sleep and stop the wheel turning.

Poor Nathan

I was talking with someone tonight and she said, “poor Nathan.” I was like, “what do you mean? why?” She said, “I always feel bad when I see kids with special needs.”

And I ask you dear reader… do you see a “poor” child when you see Nathan? What’s “poor” about him? Does he strike you as someone you should feel sorry for? Do you think he should be pitied because he is different? Is he a “poor” boy because he doesn’t function like everybody else?

When I see Nathan I see NOTHING poor about him. I see a child who is HAPPY all the time. I see a child who knows he is the center of his parent’s world. I see a child who plays, laughs, loves, cries. I see a child with distinct likes and dislikes. I see a child who loves playing with other kids and doesn’t like being told what to do. I see a child who has travelled more than many people do in a lifetime and I see a child who enjoys many different kinds of experiences. I see a child who loves brownies (even gluten casein free ones), who loves birthday parties and wants everyone to sing for him. I see a child who expresses his needs…he expresses them in different ways, but expresses them just the same.

So he can’t stand up…so he can’t walk… so he can’t talk… does that mean he is a HUMAN BEING who deserves to be pitied? Because above and beyond he is that – a HUMAN BEING. A person with feelings, a person who feels joy and sadness and has a need for human interaction.

Nathan is a HAPPY child. Just like your child. Just like most children. I am not saying he is happier than other kids. I am just say he is happy, just like any other kid. Yes, he has different abilities. Yes, he has more limitations. I am not blind. But if you look at him from the point of view of what any parent would want for their child – he has that! He is healthy. He is happy.

Please don’t pity my child. Please don’t assume that any child with special needs deserves to be pitied.

Open your eyes. Open your heart. Look at what this child is saying with every breath he takes – it is okay to be different! I don’t function like you, but I am happy! I have limitations, but I am happy!

What else do we ALL want for our kids? For ourselves, for that matter? Isn’t happiness what we’re all seeking? Isn’t that why we work, why we have kids, why we get married, why we eat chocolate and go for a massage? Because we want happiness?

And you think…poor Nathan? Think again.

Stem Cells – Ella’s Video

I found this video and thought it was inspiring!

http://vimeo.com/5334992

Ella seems to have had tremendous success with adult stem cells.

I’ve been keeping an eye on this and hope to be able to take Nathan if we can one day raise enough money.

Why fight?

Sarah, Allison Kate’s mom, wrote 2 wonderful blog posts that I wanted to share:

Visit AllisonKate.org to read them.

It also made me think…why do we fight for Nathan? Why are we always running around the city, country, world, trying to find him the best possible treatments? Why do we work night and day to do our best to make ends meet while paying for all of these expensive bills?

Like Sarah says, it’s a valid question. Why not just let him be? Why not consider the poor quality of his life and just go with the flow?

It’s a question I’ve asked myself very often. You gotta wonder about it, when you’re very ill with pneumonia and about to get on a plane to fly to the other end of the country.

And my answer is… I just can’t do it any other way. I see Nathan with his eyes bright and shining, with a huge smile in his face, looking at his friends and indicating with every fiber of his being how much he wants to go and play with them…and I can’t give up on him. I just can’t.

I think he is in this world to show a different way of life. To show an example of joy and happiness in the most, and I mean most, adverse conditions. I think he is in this world to show that with a strong spirit, courage and determination, so many things can be achieved. I think he is in this world to show that we do not have to think, act, and be like everyone else to be joyful, to feel special, to bring happiness to other people’s lives.

Nathan is my teacher. He has taught me so much. And while he is willing, I am willing. As far as he wants to go.

A tough week

We have lots of stuff going on this week. We have Nathan’s final assessment for the Dynavox at Rancho Los Amigos. They will decide if Nathan is proficient with the device. It is in Downey and should be an interesting experience. We also have the assessment at the school, which will be a bit of a waste of time as he’s not going to go to the special needs school.

On Wednesday he’s seeing a new Osteopath who’s also an anthroposphicdoctor. We met Dr. Brousseau once before and LOVED him. I’m thinking he will become Nathan’s regular pediatrician. Which will represent the end of Nathan’s path with Western medicine (other than brief forays into that world due to his shunt).

Finally, on Friday Nathan is having his 2nd MRI. Yes, I finally capitulated and decided to sedate him so we can get a full MRI. It’s been almost 3 years now since his first MRI and I really want to know what’s going on inside that brain of his! After the MRI I might do a SPECT scan just to compare the physical structures and correlate what’s happening in different parts of his brain. I’m still thinking about this one though.

And in between all of this we’ll be trying to implement his new Rhythm. So if I don’t get to post much – I’m so sorry – it’s just going to be a busy week for us!

Some videos

Here’s a video of Nathan at his first Galaxy soccer game.

He was standing up and holding up his head most of the time (except when we tried catching him on video).

Here we caught him saying “Nalga” on video. It wasn’t the clearest he’s said it, but it was the only time I had the camera ready.

And here we filmed here during his CME exercises. Notice how much easier it is for him to stand up. He is also bearing his weight longer and better. Still not much balance, but we are working on it!

Nathan using the dynavox

Here are a few videos of Nathan using the dynavox vmax with eyemax.

A Busy Week!

I’m sorry I haven’t posted more this week. We’ve been very very busy!

It’s been a pretty monumental week at our house. Remember a while ago when I started talking about shifting paradigms? Well this week marked a crucial change of paths in our journey with Nathan and how we approach his disability. Let me explain.

Nathan’s IEP meeting is next week. This is a HUGE meeting and will determine his new services as he will soon be the “responsibility” of the school district. In preparation for this meeting, I asked Mrs. Tiscia, Nathan’s Waldorf teacher, for help. On Monday morning she came over so we could talk about what Nathan’s educational goals would be, how things would work out between the special needs preschool and the Waldorf preschool, etc. It soon became a heart to heart talk about Nathan’s journey, and our journey as his parents.

And what came out of the meeting was a decision to change how we take care of Nathan. We decided to fully commit to a Waldorf way of life. Not just for Nathan, but for us as his caretakers as well. So Mrs. Tiscia came almost every day this week to help us transition. Here are some of the things we decided:

* Nathan will ONLY go to the Waldorf preschool. He will go to the mommy and me program 1 day a week, and to the preschool program 2 days / week. The other 2 days he will stay at home with us.
* We will receive NO services from the state / school district. Wohooooo!!!! I can show up at the IEP and say, thank you very much, but for now, your services are not required. Those words will roll off my mouth with GUSTO.
* Well, ALMOST no services. The only thing we will request is speech therapy. Everything else – we’ve got covered! We have an in-home PT program with MEDEK. And all his other needs will be adressed by the Waldorf approach.

So you must be wondering, well what is the Waldorf approach?

Here is the routine that Mrs. Tischia helped us create for Nathan. We implemented it most of the week and it was LOVELY. Not just for him..also for us.

* Wake up – Morning song and massage
* Breakfast
* Walk to the park
* Medek at the park
* Circle time – music, games, play time
* Snack
* Domestic Arts / Crafts
* Swimming
* Lunch
* Story
* Nap
* Snack
* Circle Time
* Medek
* Outside Activity (swim class, gymboree, music class, visit grandma, play dates)
* Bath & Massage
* Bedtime story & song
* In bed by 8 pm

This is what’s called a Rhythm. The times may change day by day, but generally, every day we will follow a similar Rhythm and we will try to do things at similar times. This will help soothe Nathan’s nervous system and give him a sense of what comes next. It will take the mystery out of his routine. This should also help with some of his behavioral problems, as he will always know what comes next.

Instead of forcing him to learn through therapy, he will be learning through sensory stimulation. Instead of seeing flash cards of nature objects, we will have a nature walk every day. Instead of having him play with plastic toys that light up and make sound, we will be introducing wooden and handmade toys. We will sing to him, massage him, tell him stories with puppets, read him books, tell him rhymes. He will touch beautiful, natural objects.

Since young children learn through imitation, we will include him when we are preparing his meals and snacks. Instead of presenting him with food already ready and in a container, he will watch us as we prepare the food, and “help” prepare his meals. For example, yesterday we made kelp soup, and “helped” us derib the kelp. He enjoyed it so much! He enjoys being in the kitchen and participating in “domestic arts”. He will also watch as we do the dishes, clean the floor, etc. This way he will understand where his food comes from and he will hopefully learn to wait! Instead of demanding food “NOW”, he will see what the process is of making the food and learn that sometimes he has to wait for things to be ready.

There’s a lot more I can say about all of this but I will talk about it over the coming weeks. What’s most important is that Nathan THRIVES with this sort of routine. He LOVES listening to songs, stories, “circle time” activities, crafts. He has been lit up from the inside out like a candle this week. There’s been an inner glow emanating from him. Instead of life happening TO him and being forced to do so many things, now he can learn those things within a gentle, loving, spiritual context.

It’s also stimulated more peace for us. Instead of being wound-up about therapies and all the things we need to do and accomplish in a day, we flow from activity to activity with joy.

So it’s been a busy week – but a very beautiful one! Next week I will try to film some of the activities that are now a part of his day.

I leave you with a wish for a Happy 4th of July and a couple of pictures!