Noah's Army

Your Child Is Intelligent

2012-01-28T08:28:00.002-05:00

This is one of the first things you learn when you go to the Institutes (www.iahp.org). Your child is smart. Your child CAN learn. We just have to find out how.

It is what every other professional told you probably would not be the case. When your child has CP, Autism, Downs Syndrome, or any other obvious physical limitation, lack of intelligence is what is assumed the second a person looks at your child.

Even in children that are, for years, thought to be "mentally retarded" by everyone around them, it is found more and more that they are not. Check out this You Tube video about a girl with Autism.

Autistic Girl Expresses Unimaginable Intelligence

I wish that these parents had found the Institutes when this young lady was two (or at all). They would have been told at that time that she was smart. They would have been told to talk to her like they would any other very bright child. Now she would be even smarter, because that assumption would have caused them to teach her more.

And remember this very important point. No one taught this girl most of the words she started typing. How many kids with Autism and CP still haven't found their voice?

Who is Brain-Injured?

2012-01-26T07:00:00.001-05:00

I have had many people ask me about my use of the term "Brian-Injured" and what kind of person to which this refers. It is a fabulous article, and I hope you will take them time to read it in spite of its length. It is by Glenn Doman, a man to dedicated his life to brain-injured children at a time when such children were supposed to be hidden from view.

Who is Brain-Injured?

If everyone could simply agree on what is meant by the various terms used to describe brain-injured children, we'd be a long way along the road to solving such problems.

The American psychiatrist Dr. Menninger, of the Menninger Clinic, once told me that when man encounters a mysterious illness he is inclined to label it, to hang tags on it, because he feels that by doing so he has somehow achieved a degree of mastery over it. Dr. Menninger pointed out that this rarely adds to the clarity but instead adds to the confusion.

Confusion of terminology is certainly a problem in the world of the brain-injured child. That's why this book is entitled What To Do About Your Brain-Injured Child, or Your Brain-damaged, Mentally Retarded, Mentally Deficient, Cerebral-palsied, Epileptic, Autistic, Athetoid, Hyperactive, Attention Deficit Disordered, Development-ally Delayed, Downs Child. Now that, admittedly, is a terrible name for a book, and all you can say is, "What the devil does that mean?"

That is exactly what I'd hope you'd say because that's exactly the question that needs asking. What the devil do all those words mean?

If you are the parent of a brain-injured child, you have surely heard all of these words. It is quite possible that different specialists have given your child most or even all of these names. We see tiny children who have been diagnosed as every one of those things, each in a different institution, and when I look at a tiny two-year-old child I wonder if it is really possible for one little girl to have so many terrible diseases-if diseases they are.

Just what do these terms mean? Are brain-damaged children the same as mentally retarded children? Are all such children emotionally disturbed, or is that a different problem? What of children with cerebral palsy? Is this one kind of condition when the child is bright, and something else when he is mentally retarded? Are all cerebral palsy children spastic, flaccid, rigid, or all three? Always? Sometimes?

Just what do these terms mean? Do they mean what they say? If they don't mean what they say, then what do they mean?

Let's take the term emotionally disturbed. Many brain-injured children are diagnosed as being emotionally disturbed. What does this term mean? Is it intended to replace brain injury as a diagnosis; that is to say, is this child emotionally disturbed rather than brain-injured? Or is he suffering from two different diseases simultaneously? Just what disease is emotionally disturbed, or is it, in fact, a disease at all? What does the term mean? If it means what it says-emotionally disturbed-then I can say that I, one of the most fortunate of men, find myself emotionally disturbed twenty or thirty times a day about one thing or another. I have a sneaky suspicion that you do, too. I don't believe that anyone in his right mind could read the front page of any large metropolitan newspaper without being emotionally disturbed over virtually every front-page story. At least he should be emotionally disturbed if emotionally disturbed means what it says. On the other hand, if the term emotionally disturbed as used to diagnose brain-injured children does not mean what it says, then the overriding question which remains is: What does it mean?

Or let's take what is probably the best-known term: Cerebral Palsy. Cerebral means brain and palsy means paralysis. To some people palsy means to shake. Since the brain can neither shake nor be paralyzed, the term cerebral palsy clearly does not mean what it says. The question then is-what does it mean?

One great authority on the subject of cerebral palsy has said that cerebral palsy means a highly specific set of symptoms produced by a highly specific and specifically located type of brain injury. Fair enough, and that would do for a term and a diagnosis were it not for the fact that another great authority has said that cerebral palsy means a very different thing. He has said that cerebral palsy is anything that happens to a child from the neck up. Also fair enough, if it were not for the first authority. Unhappily this disagreement does not end with these two authorities. There are virtually as many different meanings as there are authorities in the field, and there are many authorities.

Nor does refinement of terms necessarily help.

The term cerebral palsy can be broken down into several different sub-categories, one of which is athetoid cerebral palsy. In some classifications this term is then broken down further into sub-terms describing ten or twelve types of athetoids. Dr. Fay, who had personally authored or co-authored several classification methods in an early attempt to bring some order out of chaos, used to say rather ruefully that there were actually only two types of athetoids. The two types, Dr. Fay used to say, were "them as had it and them as didn't." That reduced the types of athetoids rather considerably. We come, in the end, to agree with Menninger that "refining the terminology" added to the confusion rather than to the clarification.

The trouble with almost all of the names we have discussed and the many others that exist is every time we use them we are compounding the easy error of mistaking the symptom for the disease.

A good example is the very popular term mental retardation. An American adult would have to be not only televisionless and radioless, but deaf and blind as well, not to have heard this term over and over again. "Mental retardation can strike any home." "Every two minutes a child is born afflicted with mental retardation." "Fight mental retardation." "Give money for research into the cause of mental retardation." "This child is a victim of mental retardation."

Doesn't all this leave the impression that there is a disease called mental retardation? There is no such disease. Mental retardation is a symptom and, like most other symptoms, is a symptom of many very different diseases. One can have the symptom, mental retardation, because his mother and father have incompatible Rh factors. One can have the symptom, mental retardation, because he got hit by an automobile. One can have the symptom, mental retardation, because he was born with the umbilical cord wrapped tightly around his neck. One can show the symptom, mental retardation, because he had measles, which resulted in encephalitis, and so on through a hundred very different diseases and injuries that can result in the symptom of severe, moderate, or mild mental retardation.

To talk about mental retardation as if it were a disease is not only unscientific but, what is more important, seriously delays the finding of rational answers to problems. Because this point is so important, I must risk belaboring it to be sure I have made myself clear. Let's take a clear and fairly precise analogy.

Let's suppose that today someone should announce that he has discovered that seven million Americans have a Fever and that this condition can be as serious as it is mysterious. Suppose that he should announce that this mysterious illness of elevated temperature, or Fever, ranged in effect from a mild inconvenience at one end of the spectrum to actual death at the other and that this very day hundreds of Americans would die afflicted with Fever. Suppose he announced that every eight seconds an American was born who would someday be afflicted with fever. Suppose finally he announced that he had just found out that there was no American Fever Society and that he was going to raise millions of dollars to organize such a society for the purpose of combating the killer, Fever.

If that should happen, it is to be hoped that someone would say to this man, "Each of the things you have said is true. You are obviously motivated by the highest and most selfless intentions, but you must not do this. While each of the things you have said is true, the conclusion you have drawn is untrue. Fever is not a disease but is instead a symptom of many different and unlike diseases or injuries. If you form such a society you will convince many people, and even some professionals, that there is actually such a disease. This will hide the truth and, in the end, be a disservice to mankind."

This is what has actually happened as a result of the popularization of that very imprecise term, mental retardation.

Mental retardation is no more and no less a symptom than is fever; neither symptom is a disease. If one successfully attacks the disease of which fever is a symptom, the fever will disappear spontaneously, as is the case with the symptoms in other diseases. By the same token, if one successfully attacks the brain injury of which mental retardation can be a symptom, the mental retardation will also disappear spontaneously.

How did this term arise and what does it actually mean?

Most people use the term, mental retardation, to describe children who do not learn as quickly or are not able to learn as much as average children. The symptom of mental retardation can be present in a child because of the combination of genetic factors. This is true in only a fraction of the children who have the symptom.

The term mental retardation was coined in an effort at kindliness. So many human problems begin with someone saving someone else from something he hasn't asked to be saved from. Before the term mental retardation was coined as a subterfuge to protect parents from what was considered to be too harsh a truth (harsh it was, truth it was not), we measured intelligence that fell below average (100 being average or normal) and, having done so, we classified sub-normal children into groups according to their scores, and such groups were called morons, idiots, or imbeciles.

Since it seemed very harsh to tell a parent that her child was a moron, idiot or imbecile, society invented a euphemism, "mental retardation". This term, in a literal sense, was a splendid choice, which labeled the problem quite well. It is what was eventually done with this good, but symptomatic, term which was the problem. It did not take parents long to come to the conclusion that it was not a compliment to be told that their child was mentally retarded and that what this term really meant was that their child was a moron, idiot, or imbecile.

The parents were not fooled, but now professionals had at least two diseases, idiocy and mental retardation.

It took several years for those who dealt with the parents to come to the conclusion that mental retardation meant idiot to most parents, and so an even newer term was coined which was an even greater euphemism. This new term to describe children with below-average intelligence was exceptional. To call a child with a low I.Q. exceptional was again literally true, but what a splendid euphemism it was. To say that such children were exceptional children rather implied that such children were somehow better than other children.

Again the parents were neither flattered nor deceived by such terms. Parents know precisely what their children can and cannot do. Parents very quickly decided that it was not good to be told that their children were exceptional. They decided that what that really meant was mentally retarded and what that really meant was moron, idiot or imbecile.

Again parents were neither deceived nor mollified, but now we professionals had at least three diseases-idiot children, mentally retarded children, and exceptional children.

Mental retardation is not a disease, it is a symptom. Idiot, emotionally disturbed, flaccid, spastic, quadriplegic, paraplegic, hemiplegic, diplegic, and a host of other terms by which brain-injured children are called, are all symptoms and none of them are diseases.

We do not believe that it is helpful to say that there are hundreds of different categories of children whose problems exist within the brain. We have learned how to help those children who are brain-injured. We do not know how to help children who are not brain-injured. Perhaps, one day we will have answers for all children. We believe that all the children we see can be placed in three simple categories:

I. Children with peripheral problems
II.Children with psychological problems
III.Children with brain injury

I. Children with Peripheral Problems

It is important to recognize that the nervous system consists of two main parts-the central nervous system (CNS) and the peripheral nervous system (PNS). The central nervous system consists of the brain and spinal cord.

Some individuals have problems due to disorders that are outside the central nervous system or brain. These disorders may include conditions affecting the peripheral nerves, neuromuscular junction, or muscle. These people may have motor or sensory problems, but the cause is not in the central nervous system or brain itself. An example of such a condition is peripheral neuropathy, which may present itself with motor or sensory symptoms. Some individuals have a neuromuscular junction disorder. They can also have weakness, but the weakness is due to a problem at the junction between the nerve and muscle, not due to a brain injury. Some individuals have a muscular dystrophy, or muscle disease. These people may also have weakness, but in this case the weakness is due to the muscle, not the brain. Sometimes central nervous system and peripheral nervous system problems co-exist.

The Institutes program is intended for individuals with central nervous system disorders. It is not intended for individuals with problems exclusively due to peripheral nervous system disorders, neruomuscular junction diseases, or muscle diseases. In most cases, these problems have been identified beforehand.

II. Children with Psychological Problems

In some cases, a previously well child with no past history of a structural brain injury will develop psychological, emotional or behavioral problems. Scientists and doctors are trying to understand the complex biological or chemical changes that may occur in the brain, accompanying some of these conditions. Some of these children may benefit from programs emphasizing good nutrition, elimination of allergies and detoxification. Programs focusing on a good physiological environment and programs for social, physical and intellectual excellence may also be of helpful.

Many children with brain injury have what society has called "psychological", "emotional", or "behavioral" problems. Some of these children may even be said to be "psychotic". The brain runs everything in the body. Some children who have been diagnosed as "psychotic" are not psychotic at all but brain-injured. When this is the case as the brain responds to neurological treatment, these behavioral problems resolve.

III. Children with Brain Injury

When we at The Institutes for Achievement of Human Potential speak of a brain-injured child, we mean any child who has had something happen to hurt the brain. That something may occur at any time. It may occur at conception, or a minute, an hour, a day, a week, a month, or nine months after conception. It may occur during birth or a minute, an hour, a day, a week, a month, a year, or ten years after birth. It may also happen seventy years after birth, only then he is called a brain-injured adult.

If you could look at the injured brain in the operating room, you might even be able to see the injury which could consist of highly visible harm confined to a small area, or of harm essentially invisible to the naked eye and spread over a broader area. In some cases, the problem may only be seen under a microscope. In some cases the disorder is at the level of cellular function and may not be able to be seen at all with current technology. In some cases, brain studies, brain imaging, electroencephalograms (EEGs), evoked potentials or other tests may be abnormal. In other cases, these studies may be unremarkable. The brain may be severely hurt or it may be mildly hurt. It may be hurt in a way that limits walking or talking or hearing or seeing or feeling, or a combination of these.

Sometimes different injuries have occurred to a child at different times. Sometimes the child will have a clear-cut cause for the brain injury, such as a major trauma or infection. Sometimes no clear cause for the brain injury will be found. When this book speaks of the brain-injured child, it means a child who has a hurt brain from one of, or some of, any number of causes. Although sometimes the causes may be similar, each case is unique because it effects a unique individual-a child with his own unique potential.

1. The Acutely Brain-injured Child: Some children have brain injuries due to causes that require immediate or emergency medical or surgical treatment. These injuries may be due to an infection, hemorrhage, tumor, trauma, progressing hydrocephalus or one of a number of conditions that need to be acutely addressed to insure the survival of the child and to limit the harm done to the brain. This care is usually given in an emergency or hospital setting. After this acute stage, the child may be left with residual brain injury. The brain-injured child may have various degrees of problems in walking, talking, hearing, seeing,, or feeling. When left untreated, these problems may become chronic or permanent. We see the brain-injured child after the acute and life-threatening problems have been managed and stabilized. It is important that this child receives treatment as soon as possible to help speed recovery. However, even those who have been brain-injured for many years can benefit from treatment.

2. The "Mentally Deficient" Brain-injured Child: Formerly called "mentally deficient", this child is one in which there is a malformation or abnormality of the brain. This may be on the basis of a genetic disorder such as Down syndrome, or due to any number of problems that can effect the development of a child's brain before birth. There may be malformations of other organs or other body features as well. At one time it was thought that children with brain malformations or genetic problems would not benefit from treatment. Many were confined to mental institutions for life. We have had many brain-injured children on our program who have had CT or MRI scans that show abnormalities of brain development. These malformations can include gyri (convolutions) that are too big or too small, or lobes of the brain or other structures that are malformed or missing. We have also seen children with abnormalities of gray or white matter development, sometimes referred to as heterotopias or migrational disorders. We now know that although the brain may appear structurally different, it will respond to stimulation and treatment. These children are candidates for a neurological treatment program.

3. The Brain-injured Child with Neurodegenerative Disorders: Children with neurodegenerative disorders may have diseases or conditions that cause the progressive destruction of the brain and nervous system. In some cases, a metabolic factor or some other problem can be found which may be modified by nutrition, or by altering the physiological environment of the brain. This allows us the opportunity to treat the residual brain injury. In other cases, a disorder may be causing rapid relentless destruction of the brain and nervous system. Fortunately, such cases are rare. In such cases, we may not be able to make a significant impact with our program.

Brain injury can occur at any time. Brain injury can be due any of a number of causes. Sometimes the cause of the brain injury is not fully understood. Sometimes, brain-injured children will be given labels by medical professionals, educators or society. Those labels are not diseases but symptoms of one problem-brain injury.

There are literally millions of brain-injured children. I might paraphrase Abraham Lincoln, and I am sure he would not mind in the least if I said that "God must have loved the brain-injured children because he made so many of them."

These brain-injured children are wonderful kids, they need and deserve our help. We now know that a program of neurological organization will yield results in most brain-injured children. In the future, perhaps there will be answers for all brain-injured children.

by Glenn Doman
from
What To Do About Your Brain-Injured Child

Two Sisters Gardening

2012-01-25T07:00:00.001-05:00

Going along with the "new blog" theme of yesterday, I wanted to let you garden lovers (and novices) know about this new blog that is all about organic gardening.

What does this have to do with Noah? A lot, actually. Several years ago, my mother and Aunt decided to start an organic garden thinking that it would not only be a fun challenge, but it would provide some of the organic vegetables Noah needs for his very special diet. Now, several successful crops later, the two sisters are looking to share some of what they have learned as well start an online and local gardening club.

Check them out soon! Believe it or not, now is the time to start getting that garden plot ready! They will have a lot of guests that will highlight many kinds of gardening, so be ready to learn.

And remember when you check out their site (by clicking the picture above) -- its inspiration began with Noah!!

The Difference

2012-01-24T11:34:00.002-05:00

Check out this blog post by some sweet friends of our who also have a child on the Institutes' Intensive Treatment Program. It is a really sweet sentiment about what it is like raising a child with special needs. I hope you enjoy this post as much as I did. If you have a special needs child, you will understand. If you don't have a special needs child, perhaps you will understand more.

Parents of Hurt Kids

As I commented on the blog post, sometimes I feel secretly that I am actually the one that got to go to Italy, and everyone else just saw a facade. At least that's the way Noah (and because of what I've learned from Noah, Eli too) makes me feel.

I look forward to reading more from their blog!!

Laughter IS The Best Medicine

2012-01-23T09:47:00.002-05:00

And just for the record: No! We don't just sit around and have fun all day. Sometimes we crawl around and have fun!

This all started because I was sipping some very hot tea in-between doing some intellectual program, and I discovered that Noah thought it was very, very funny.

Don't forget in the midst of everything else that keeps us so busy -- have fun with your kids every opportunity you get!!

Brain Workout

2012-01-20T08:52:00.004-05:00

"Just like the biceps, the brain grows by use. Those who use their biceps an extraordinary amount have extraordinary biceps. The same is true of the brain, because the brain grows by use."

- Glenn Doman

Mr. Doman is an amazing man, though he would certainly deny it. Over fifty years ago he started an organization to help brain-injured kids (referring to any kids with any kind of brain issues -- CP, Autism, LD, ADHD, Traumatic Brain Injury -- the list keeps on going) at a time when most doctors and specialists thought that these children should be kept quietly institutionalized. He worked long and hard to come up with a program that would give these kids the best chance for success in their lives -- and succeeded!

That being said, I have been thinking lately about how I can really improve Noah's program. We focus so much on the physical and physiological -- with good reason -- that sometimes the Intellectual part is just whatever we can get done that day. It is still a good bit of stuff, but in talking with Noah on the FC yesterday, I found that he wanted more - is craving more.

So that is what I am going to try to do. I want to make sure he consistently gets that "brain workout" to the highest degree. Because another thing that Mr. Doman has taught us is that when you improve the brain in one area, research has shown that it improves in all areas.

A New Allergy Cookbook!!

2012-01-19T16:23:00.004-05:00

While I was looking up some more recipes to make Noah and Eli some good foods that don't bother their food allergies/sensitivities, I came across a recommendation for the following cookbook. I got it yesterday, and am really looking forward to trying some new recipes from it!!

The Allergy Self-Help Cookbook by Marjorie Hurt Jones, RN

I am especially excited that there are a lot of recipes using buckwheat flour, which can be tough to work with. I'll let you know how the new recipes work out. It gives many recipes free of all the major allergens and lots of suggestions for ingredients that can be switched around if the recipes do contain common allergens.

I'm already enjoying some of the suggestions from the first section of the book, which talks about food allergies and sensitivities. There are also several good charts to which I will be referring regularly, including one for foods in the same family.

Happy Cooking!!!

Movie Time

2012-01-18T08:58:00.004-05:00

In the afternoon, Noah spends a little time in his respiratory patterning jacket. The jacket helps him to take deep breaths in a good rhythm, and done enough, his brain will remember the appropriate rhythm and keep that rhythm going. For this he needs to remain relaxed.

The problem I have with it is that he gets bored and starts kicking his feet and wiggling around -- so much so that his rate of respiration increases. Then the jacket doesn't do him a whole lot of good. I have found that a good movie helps this problem.

So here you see the boys enjoying a bit of Toy Story 3. I love the intense concentration on their faces. Often times Eli is at school while Noah is doing his jacket time, so Noah will watch his movie in Spanish. He pays attention just as well, and still laughs at the same places (plus a few extra -- and I have been told by a doctor from Mexico that the Spanish versions are funnier -- I guess Noah agrees).

Energy Update

2012-01-16T17:53:00.003-05:00

After feeling very behind and Noah's program only being mediocre of late, I thought you'd like to know that Noah had a great afternoon of crawling. He did session after session of crawling in under five minutes. So glad to see him feeling a bit better!!!

And here is the sweet boy listening to his special TEAS music and doing a respiratory mask. He is so stinkin' cute, if I do say so myself!!

Playing Catch-up

2012-01-16T08:06:00.003-05:00

There are times when one just gets behind. It might be due to circumstances, distractions, fatigue, unadulterated laziness... whatever, but you feel like all the other runners are way ahead. I realized that this is where I have been for several months now. The problem with running from behind is that you can only get so much done before the stuff that has been piling up falls over on you (and you simply can't be as productive before it falls, either).

So between the pregnancy and the holidays -- I have arrived at that point. After a good cry over it last night, and a great conversation with my hubby about it, today is the day to get up and go. The only way to catch up with the things piling up is to start at the top of the pile and work your way down until it is done. Just go.

Frustration is the number one thing that gets in my way of "going". Right now, Noah has been having more reflux and stomach issues than he had been, he has ulcers in his mouth that keep him from eating well, and he's just not crawling as well (the fatigue I mentioned last week). When things like that get in the way of Noah's program, frustration can really keep me from being productive. But the truth is, I can use these times to get some other things done so that program is better over all. And we'll be ready when things do swing back around -- and they always do!

So why am I writing all this on this blog?!

Because, I bet I'm not the only one... But, if I can do it, you can do it!!

GFCF (and egg free) Blueberry Muffins

2012-01-15T10:07:00.005-05:00

Wow! What a poor "poster" I was last week! Well, this week I have a lot of new stuff coming at you, but I thought I'd start with a new recipe that I did this morning for muffins that are pretty much free of all the major allergens and I used maple syrup instead of sugar to sweeten them. They were successful with the hubby and the six-year-old, and I thought they were pretty good myself.

I would love to show you a picture of these muffins -- they turned out a pretty shade of blue-green because of the blueberries -- but they were all eaten before I could get the camera out!

Here's the recipe:

GFCF Blueberry Muffins (GFCF = gluten free, casein free)

1 cup Garbanzo/Fava flour

1/2 cup Tapioca flour

1/4 cup ground flax seeds

1/4 tsp. salt

1 Tbsp. Baking powder

1/2 cup Almond milk (or other milk)

2 Tbsp oil of choice (I used canola)

1/4 cup Maple syrup (agave would work well, too)

1/4 tsp vanilla

1 cup frozen blueberries, thawed

Preheat oven to 350 degrees. Spray muffin pan with nonstick spray and set aside. Mix together dry ingredients, stir in wet ingredients and blueberries and mix until there are no dry spots -- but do not over-mix. Pour into prepared muffin pans and bake 12-15 minutes (my oven bakes kind of hot - yours may take a little longer). Makes 10-12 muffins.

Energy Problem

2012-01-10T11:40:00.004-05:00

We've been having a bit of trouble during crawling lately, which I will call "the sleepies". Multiple times lately Noah has been crawling when inexplicably, he stops and falls asleep (as you can see in this picture). I am trying to get this problem sorted out. Maybe he is still a bit "off" from the holidays, or maybe it is the constantly changing weather. I'm going to adjust some of his supplements to see if that helps.

On a funnier note, I put Noah down on the floor to crawl yesterday and went to the other room to get his lunch ready. A few minutes later I walked back in to discover that he had pushed one of his "movable walls" aside, and was making his way toward the carpet (above photo). He looked rather proud of himself, and when I commented on it, he busted out laughing. He is such a sweet, little rascal!!

New Low-Allergen Muffin Recipe

2012-01-07T08:36:00.004-05:00

Trying a new recipe is always a bit tricky -- especially because these days I've never met a recipe I didn't have to modify. Right now I have my version of Bob's Basic Gluten Free Muffins in the oven. I used the Bob's GF All Purpose Baking Flour, but I used maple syrup instead of sugar, egg whites instead of whole eggs, and almond milk instead of milk. I'll let you know how they turn out...

This is what they looked like.

And the way the disappeared, I think we can call them a success! They had a slightly spongy texture, but were nice and moist. I will definitely be making these again -- but next time I will be adding a cup of blueberries to the recipe.

The Bob's Red Mill Recipe can be found here.

Here are my changes:

Amelia's Basic Gluten Free Muffins:

1 1/2 cup Bob's GF All Purpose Baking Flour

1/4 cup Maple syrup

2 Tbsp vegetable oil

4 egg whites

1/4t sea salt

1/2 cup almond milk

1/4 tsp vanilla

1 Tbsp baking powder

Preheat oven to 350. Lightly spray a 12-cup muffin tin with nonstick spray, set aside. Mix together dry ingredients. Add the wet ingredients and stir with a wire whisk -- but do not over-mix. Pour into prepared muffin tins and bake 10-12 minutes.

NOTE: Blueberries would make a great addition to this recipe!!

Enjoy!

Supplements Minus the Allergies -- a website

2012-01-06T07:00:00.001-05:00

This is a great website that our pediatrician told us about that carries a lot of good supplements that don't contain the high allergy ingredients or the additives and dyes that your child (or you) may need to stay away from. A lot of the supplements that I use for Noah can be found on this website, plus I have been shopping around for some chewable supplements for Eli that don't contain the foods he can't eat as well.

And the great thing about getting them all in one place -- it cuts down on shipping! I have been looking through the prices of many of the things we order a lot, and they are quite reasonable compared to what we have paid elsewhere. They also compound, which is a great thing for those with really specific needs. Check it out! www.ourkidsasd.com

Webinars for Gluten Free Diet

2012-01-05T07:00:00.000-05:00

Let me state that a GFCF (gluten free, casein free) diet is not a cure for Autism or Cerebral Palsy or any other disorder or special need out there. However, there are THOUSANDS of parents who have found that this diet has been particularly helpful for their special needs child in a number of ways.

If you are interested in looking into this diet, or you just want to learn more about the diet that your are already trying, you may want to check out these webinars listed on the Parent to Parent of Georgia website. The link will take you to the page for archived webinars, and you want to click Food for Thought: Improving Function Through Diet Intervention. It is in three parts and contains a lot of helpful information to get you going.

Many children with special needs have other dietary needs (that is to say, restrictions), so don't give up. There are blood tests that can help you determine where the problems may lie, so push your doctor to help you find out.

Gluten Free Website

2012-01-04T07:00:00.000-05:00

I do a lot of trolling the Internet for recipes and products that have just the right combination of ingredients that I can feed to either of the boys. I have found some great recipes and some that weren't so good, but I have to say I've had many more successes than failures.

I have been trying to find some gluten free, soy free (and a couple other ingredient free) crackers without a whole lot of success, but I came across this website that shows a lot of promise. Under each category of food, it shows pages of pre-made foods and what ingredients they do not have. For instance, under crackers, it shows a list of crackers that you can order, and under each cracker it lists gluten free, soy free, milk free. Or gluten free, milk free. I didn't really look at the prices, but you can order it all from one site, which is nice.

It is called the Gluten Free Palace. Check it out to look at a very long list of foods and even supplements that are free of the foods that you or your kids can't eat.

Noah's Birthday Week

2012-01-03T13:23:00.003-05:00

Because Noah's Birthday is the day after Christmas, we usually have his birthday party a week or so after just so there is a little separation between the two. We can hardly allow him to get up and not make a big deal of it being his birthday all day long, plus we never fail to have one or two people come by during the week to wish Noah a happy birthday. Therefore it becomes his birthday week!

We keep the party fairly low key so it doesn't get too overwhelming for his sensitive ears. Here he (with a little help from Daddy) had just blown out the candle on his special birthday cake.

Eli, for reasons completely unknown (not to mention completely unbeknownst to us), decided to dress up as Indiana Jones for Noah's birthday party. He found Grandmama's garden hat and taped the "5 o'clock shadow" on his face and chin. I thought his shirt choice was a little ironic.

Noah got some much-needed clothes and some gift certificates to buy books. He also got a book about the Mythbusters, which is one of his favorite shows.

Christmas Fun

2011-12-27T12:45:00.004-05:00

Here are a few pictures of the boys enjoying the several days of Christmas we have with our families.

Christmas Eve -- Daddy helping Noah open his first round of Christmas presents.

Eli is having no problems opening his own!

Here are "the three boys" enjoying their presents from Santa on Christmas morning.

And here is Noah sitting at the table with everyone else for a Christmas breakfast thanks to the special tomato seat given him by Grandmama and Granddaddy. It makes his mama so happy to see him at the table!!

MERRY CHRISTMAS!!!!!

2011-12-24T07:59:00.002-05:00

Almost nine years ago, we received a Christmas miracle. Noah was born the day after Christmas, and though he should not have survived, we got to bring him home two weeks later and have gotten to enjoy him ever since. He has brought so much joy and love into our lives, and it seems no coincidence to me he came into the world at such an appropriate time of year.

So this Christmas I wish you and yours the kind of love and joy that Noah brings into all of our lives.

Soy free, Milk free, Cane sugar free chocolate chips

2011-12-22T07:33:00.010-05:00

Actually, these chocolate (or carob) chips are pretty darn healthy -- at least in moderation. One of the main ingredients is coconut oil, and if you've done some research on coconut oil, you've found that a lot of hype is going on about this oil. It is one of the few non-animal sources of rich saturated fat, and I have read that the research is showing that the saturated fat in coconut oil has almost the opposite effect on the body that animal saturated fat has -- even promoting weight loss! Then there's the antioxidants in the cocoa powder.

These chocolate chips are extremely rich with a taste that is very slightly sweet. I made mine with Agave nectar instead of cane sugar, and I must say that I have to practice restraint not to grab a few to munch on every time I walk by the fridge. Here's the recipe:

Chocolate (or carob) Chips

1 cup coconut oil

1 cup cocoa or carob powder

3 Tbsp sweetener -- I used agave nectar. (The recipe says you can substitute 3 scoops stevia extract or to taste)

2tsp vanilla

Melt coconut over very low heat. Remove from heat. Stir in carob, sweetener, and vanilla. Pour mixture into pan (8x8 works well -- I used some parchment paper underneath the mixture for an easy clean-up). Place in refrigerator or freezer until solid. Remove from pan and cut into chunks of desired size. Store in a cool place until ready to use (I think storing in the fridge works best).

I used these in a couple batches of gluten free cookies for Eli and still have some left over!

I used a square, plastic container to pour my "liquid chips" into. The parchment paper allows you to pull it out easily and cut the chips without worrying about the sides of the container.

Unfortunately I used most of my chips before taking a picture of them (it made about three cups), but here are a few of them.

And I know these aren't the prettiest cookies ever (they do taste great, and my six-year-old loves them), but it gives you a view of the chips baked in cookies.

Sensory Processing Disorder -- a good article

2011-12-20T18:39:00.004-05:00

SPD is its shortened name, and it can cause a lot of difficulty in the life of anyone who has it. It is most common in Autism spectrum disorders, but it is also seen in cases of ADHD and Cerebral Palsy among other disorders.

And yes, it is something with which Noah struggles. It can make family get-togethers difficult for him, and it can make something fun like a circus or a basketball game impossible. If he is in that type of situation for too long, he'll eventually get sick at his stomach and vomit. He will holler and yell to try and drown out the noise until he finally breaks down crying. A cough or a sudden laugh can make his burst into tears. Any time the children in his Sunday School class sing, he has to leave the room. But his problem is a lot less severe than some children.

He used to be sensitive to certain types of touch, but hardly felt others. That is one thing we got past very early on doing the program we do for which I am thankful (see the post about masking -- I think that has helped him a lot with this problem). He still has some issues with his face being touched, but overall he is much better with touch.

Some children are sensitive in each of their senses. This article brought to my attention by my friend Brooke is a great look into what sensory processing disorder feels like. You can read a thousand books by a thousand doctors (and they'll tell you a thousand slightly different things), but I have found even with all the books I have read, experience has been my best teacher. Check out this article by an adult with SPD:

What It Is Like To Have Sensory Processing Disorder

Noah's Christmas Present -- and the website

2011-12-16T07:00:00.000-05:00

I am very excited about the Christmas present Noah will be getting from Grandmama and Granddaddy! It came in the mail today, and of course I had to get it out for a quick check. I will have to be careful not to pull up this blog post in front of Noah -- I want it to be a surprise -- but I just had to share.

This is the Special Tomato sitter from the Special Tomato company. It straps onto a regular chair, and it will allow Noah to sit at the table with everyone else!! And on a chair with arms, I can put a tray on it that we already have. (There is also a rolling stand that can be purchased with it, but for now we just wanted the sitter).

Right now Noah eats all of his meals in his stroller, and, of course, it stays filthy. I'm looking forward to keeping that in the van and having his seat in the house!

I love the Special Tomato foam because it is an amazing mixture of extremely soft and very sturdy. I don't know how they pull it off, but it is very comfortable for him to spend an hour while he eats and sits up straight afterward. You can look at the Special Tomato website, but I suggest checking out AdaptiveMall.com. They are about half the price (except right now they are on sale for almost half off of that)!

Food Allergies -- Eggless Marshmallows

2011-12-15T13:17:00.006-05:00

Actually, these marshmallows are not only egg-free, but they also contain no cane sugar. They are made with maple syrup, but you could use agave or corn syrup according to your needs. They should stay refrigerated, and they are slightly gooey-er than the typical marshmallows, but the recipe I used said they work well for rice-crispy treats, which I plan to make with them soon.

The best part? They are super-duper easy!!

Egg-free (and sugar "free") Marshmallows

6T cold water

2 envelopes unflavored gelatin

1 cup Agave, maple, or corn syrup

1t. vanilla

1/4 t. salt

flour or corn starch

Add gelatin to water and microwave 30 seconds. Pour into mixer. Add syrup, vanilla, and salt. Beat with electric mixer for 12 minutes until the marshmallows are very thick and tripled in size. Pour into a 9x12 baking dish coated with cooking spray and dusted with flour or corn starch (I lined my dish with parchment paper and put a little corn starch on top). Let them cool in the fridge at least three hours or overnight. Cut marshmallows with a wet knife into squares.

When I first put the ingredients in the mixer I thought, "These are gonna be brown!" But they fluffed to a nice color fairly quickly.

The mixture globbed down into the dish, and I spread it with a rubber spatula. I didn't worry about trying to make them too "pretty" as I am just planning on using them in a recipe. I would be good to note that this would make a great marshmallow cream to add to a recipe without any other steps.

And this is the finished product -- not beautiful, but very tasty. My 6-year old allergic child was thrilled when I gave him a bowl-full!! I may make some Christmas shapes the next batch using the old metal cookie cutters.

Christmas Pictures2011

2011-12-13T07:00:00.002-05:00

What would the end of the year be without a few Christmas pictures of the boys?!

Am I just biased, or are these boys not particularly handsome?!

Now they are being goofballs. I love my little goofballs!!

And here's a nice family shot -- pregnant belly conveniently hidden.

And another goofball shot. Oddly enough, this was the only shot that would work on the Christmas card, and it was so cute anyway that I don't really mind.

Noah's Pearly Whites

2011-12-12T07:00:00.000-05:00

Noah and Eli had their bi-annual trip to the dentist on Friday, and I must say it went pretty well. It is always a bit traumatic for Noah to have things stuck into his mouth, but he did let the dental hygienist use her electric brush (or whatever that thing is called -- it's not really a brush, is it?) on his front teeth, which was a first for him. And she got the back teeth really well with a regular tooth brush. He got his feelings a little hurt when they used a tool to keep his mouth open in order to get his x-rays, so I am glad they saved it for last. And look at the results.

His teeth are so nice and white!! One interesting thing I have never noticed before -- Noah is missing a permanent tooth on the bottom front. There should be four teeth between his I-teeth, and there are only three. I don't know how I have never noticed it before. Interestingly enough, his two baby teeth in that area were fused. It's nothing you can see, so it doesn't really matter, but I thought it interesting.

Eli did well, as always, though he did try very hard to persuade the hygienist to let him brush his own teeth. He also tried to talk her out of sticking that sharp instrument into his mouth, which he didn't think was quite safe. I just stood back trying to laugh as little as possible. Eli was very (very, very, very) excited when he got to see his permanent teeth coming in on his x-ray, and the dentist informed him that his front bottom teeth were a little "wiggly".

I must say that I was quite impressed with the Dentist, Dr. "B" as she is known, at My Kidz Dentist in Newnan. She was so very sweet and communicated some things about Noah's teeth that Noah's last dentist had not. She also prescribed some medications that could help Noah's mouth sore problem. He hasn't been getting them as often lately, but when he does get them, it makes eating really difficult. I also suspect that beneath that quite and sweet demeanor, there exists an extremely high IQ.

Food Allergies -- Tomatoes

2011-12-10T08:00:00.000-05:00

What do you do when the little spaghetti lover in your life turns out to be allergic to tomatoes? Well, you can completely despair of ever having a happy child again, or you could try this recipe to make spaghetti sauce without tomatoes. I have to say that I was a bit skeptical when I saw the recipe, but I made it with the hope that it would turn out to be something Eli would eat. Boy was I surprised!! Eli went happily through it and asked for more. I tried something like it for ketchup -- but I'm still working on that one. I'll let you know when I get it right!

Of course Eli is allergic to gluten as well, so his noodles are rice noodles purchased at the local Oriental Market. Their rice noodles cook up really well, and they are much better priced than rice noodles in the grocery store.

No Tomato Pasta Sauce

1 cup cooked carrots

1/4 cup cooked beets

1/4 cup water

3 T lemon juice (or vinegar)

1 T corn syrup, rice syrup, or agave syrup

1/2 t salt

3/4 t onion powder

1/4 t. oregano

Blend all the ingredients in the blender until smooth. Pour over pasta and meatballs, or store in the refrigerator.

Special Needs Christmas Gifts -- another good website

2011-12-09T08:00:00.000-05:00

Achievement Products for Special Needs

I was checking out this website that my friend, Brooke, mentioned to me, and there are some really cute things at this site that are fairly well priced. You can actually find some cute sensory stimulation gifts for under 10 bucks -- and they are having a 15 percent off sale on their sensory items right now!! Check out the site for some cute gifts to give the special needs kid in your life.

A problem with yeast -- a good article

2011-12-07T09:03:00.006-05:00

I know I have mentioned Eli testing allergic to yeast with really high counts. The doctor actually put him on a round of medicine to take care of the yeast in his digestive tract, the count was so high.

Yeast, most commonly candida, can be a big problem for children with brain injuries -- like Noah. And indeed, several years ago Noah had a really difficult time getting rid of his yeast overgrowth. His was so bad that he kept thrush (the white growth on the tongue) for months. We now keep Noah on probiotics and several other supplements to keep the yeast at bay. It is also good that he is not on any sugars as sugars feed yeast.

Yeast problems like this are not extremely common, but they can cause a lot of digestive issues, and in children particularly have been linked to problems like chronic fatigue and poor attention.

I'm not suggesting that curing a yeast problem will cure Autism, or CP, or ADD, but it certainly seemed to affect Noah a lot more than it has Eli. So taking care of a problem like this can at least help the physiology of any special needs child who has it -- and those of you with experience, you know physiology is 75 percent (or more) of the battle.

For more information about yeast, check out this article from TACA (Talk About Curing Autism): What Is Yeast Overgrowth

Decorating the Christmas Tree

2011-12-05T12:53:00.005-05:00

The annual decorating of the Christmas tree was always a huge event around my house growing up, and thanks to a very eager 6-year-old, it continues to be. With all the dietary changes we have had to make lately, there weren't a lot of the sweets for the evening, but Eli didn't really seem to notice. And it wouldn't really have mattered to Noah, either, as he cannot eat sugar of any kind (sugar is a water-retaining agent like salt, so it could increase swelling and, therefore, seizures).

Anyway, here are a couple pictures of the boys enjoying the decorations of the season.

Here's Noah hanging a few decorations on the tree. He loves to be a part of everything we do -- of course!!

And I thought this was a really cute picture of Eli holding the ladder for Granddaddy. It is a very sturdy ladder, but Eli felt it very important to be sure someone kept it steady.

Food Allergies -- the good, the bad, and the really, really irritating

2011-12-01T19:29:00.007-05:00

We got the boys' food allergy profiles back, and all I can say is that I feel certain it is my husband's fault. He's the one from whom they inherited all this stuff (no, it is on both sides of the family, I suppose). But seriously, I used to think that all the food reactivity Noah has was directly from his brain injury, which tends to be the case for many brain-injured kids. But now that I look at all of Eli's test results, I am realizing that it may have a lot more to do with a genetic predisposition to poorly digest food.

The truth of the matter is that most food allergies come from the fact that we don't digest our food well. First of all, we don't chew it well (the first very important part of digestion). Then a certain number of people lack the necessary stomach acid to break down their food. Often times doctors suggest the "purple pill" or some other PPI for reflux, which further cuts down on stomach acid, further reducing ones ability to digest their food well. In some cases, you body can actually attack this undigested food as a foreign substance.

My husband is a great example of this. He was put on the "purple pill" only to find out that while most of his symptoms were no better, he had some new symptoms that cropped up. He stopped taking it and started an acid/digestive enzyme supplement. Not only did his reflux symptoms decrease (and most of the time stop completely), but his food allergies (for which we couldn't find the cause, but would make his lips swell up badly) have never occurred since then either. (Make sure to consult your health care professional before making any changes to prescription meds!!).

Anyway, both of the boys have various food sensitivities (Eli is mostly wheat/gluten, soy, and yeast. Noah's were various but included wheat/gluten and many other things). The good thing is that we now know why Eli has all his sinus trouble but tested for very little pollen allergies. It is also great that I now have some real direction on foods I can add back to Noah's diet (which has been a real struggle if you haven't read past posts). Every new food that I have tried on which he tested negative has been a success so far!! He is on a four day rotation for the first time in years!!

The really frustrating thing is that I now have to make all of Eli's food from scratch. I did a lot of that anyway, but there were a few gluten free things I could get in the store to add to his lunch that made things a lot easier. When you throw in soy AND yeast, there is virtually nothing you can get in the store. You'd be amazed at what all has yeast in it. Plus, because of the yeast he can't have honey or cane sugar. Anyway, I am cooking most everything from scratch, and we are ALL on a four day rotation diet (it doesn't work if we don't eat the same things).

I only scratched the surface on many of the topics mentioned in this post, so if you have any questions, feel free to email me at my address listed on the home page!

Great Article About Autism Therapy

2011-12-01T08:00:00.000-05:00

Autism Therapy More Successful When Peers Involved Too

This is a great article about autism therapy and the need to teach other children how to interact with children with special needs. While the focus is on children with autism, the same is true for other special needs kids. Noah LOVES to interact with other children, but it is hard for him to do because they don't know how to interact with him. Of course there is Noah's brother and cousins who have all been taught and have been around him enough to have figured it out -- indeed, Noah's oldest cousin (now 11) can get him laughing so hard we have to make him take a break! And most kids we have been around are very willing to learn. In fact, I find that most of them want to know how they can interact with Noah.

What this article doesn't mention is that there are also benefits for the children who learn to interact with special needs kids. Is it not a wonderful lesson for children to learn that there are needs outside of themselves? Especially when it can be done in such a positive way. So if you see the opportunity, get your kids involved. And even if the opportunity never arises, do a little research yourself and find out the best way to interact with the special needs kid(s) with which you come in contact. Then teach it to your children.

Special needs Christmas Gifts -- a helpful website

2011-11-30T08:00:00.000-05:00

Every year during the Christmas season, I spend a lot of time trying to find just the right Christmas present for Noah. Having a very weak grasp and limited mobility in his arms makes finding a present he can actually play with very difficult. And every year I end up purchasing something from Enabling Devices (click for the link). I have found that they have a great range of "switch" toys (not to be confused with the bag of switches Santa brings to those on the naughty list). They are toys (often the popular toys you can get at the store) that are connected to a big button, or switch, which activates the toy. You may find that their prices are a little higher than the regular store prices, but they do run specials and sales, and around this time of year they usually have a free or reduced switch offer.

They have a lot of other toys as well, including activity centers, adaptive art toys, adapted games and puzzles, and toys that focus on specific fine motor skills. A lot of special education teachers and therapists use this site, but I think it is a great place to get that special kid in your life a toy he or she can really play with on his or her own!

They have a wide range of other interesting products for special needs as well, and you could spend a lot of time browsing.

This is one of Noah's favorites that he got from Santa last year called the mini racer. So glad Santa knows about Enabling Devices!

Back to the real world!

2011-11-29T11:27:00.002-05:00

We had a wonderful Thanksgiving week filled with family and food, and now (on Tuesday) we are still trying to get back to our routine. Noah and I enjoyed having Eli home from school the entire week, and are missing him now. Plus, Noah seemed to have picked up a mild cold that is lingering (and making him quite unwilling to do anything but masks and intellectual program today).

He told me on the FC, "I am sick because I have a sore throat and am very stuffy!" Had I given him time, he probably would have added that he needs to take it easy and watch a movie -- he usually says that when he is sick. He is such a sweet, little rascal!

I am sorry to say, also, that I didn't take any good pictures this past week. I think it was because I finally got Noah and Eli's food allergy profile back from their blood work, and was reeling from all the changes I am having to make to both of their diets.

I did manage, however, to make turkey and dressing and pumpkin pie that each of them could enjoy. In fact, Eli's pumpkin pie was so good that everyone enjoyed it without knowing it didn't contain a lot of the "normal" ingredients. And I wish I had taken a picture of the free range turkey we baked for Noah. It was so pretty (not to mention delicious)!!

I'll talk more about the blood work results and what those food allergies mean for the boys another day, but for now I get to begin wishing everyone a:

MERRY CHRISTMAS!!!

Thankful

2011-11-19T12:09:00.003-05:00

There is quite a long list of things for which I am thankful, and as we come into the official week of thanks, I am made mindful of the things for which I am most thankful.

There are all the small things like a conversation with my mother while sipping our favorite hot teas, having a roof over our heads, and comparative comforts. But when I think of the things that I really couldn't do without, it centers around three people. And when I look at those three people, I realize the abundance -- the overabundance with which I am blessed.

Do you realize that the divorce rate among couples with special needs children is much, much higher than in families without special needs children? I cannot really even imagine that because Noah has brought us so much closer as a family, but I have read that it is certainly the case. When my husband heard that statistic, he was highly offended. He is a family man through and through, and he adores both of his children. He has a wonderful relationship with them both, and he shows a great appreciation for me staying home and doing the program that I do with Noah.

Then there is Noah. The child we almost did not get to bring home from the hospital. We didn't know for five days after he was born whether or not he would ever come out of that neonatal intensive care unit. So there isn't a day that goes by that I don't praise God for getting to spend time with him. Every day has been a gift, no matter what challenges were faced that day. And I think there is a special blessing in that most parent can't fully appreciate what it means when they get to bring their children home. I think there is a special joy that I carry because I experienced that close call, and I've watched a couple of friends of mine who didn't get to bring their child home. I can tell you that they have a special appreciation of their other children. I don't think it makes me special or that "typical" parents are somehow not as good, they just don't have that experience.

Then there is Eli, who is special in his own way. I cannot describe the joy he brought into all of our lives. He makes every day just a little more fun. No, strike that. He makes every day a lot more fun. And the contrast between his birth and Noah's makes me that much more able to appreciate the ease that it was bringing him home 36 hours after he came into the world. And I think that Eli has an extra measure of compassion because of his brother. In any group of children, he is the one watching out for the others because he wants everyone to feel good and be happy. He is stubborn and determined, and though it gets him into trouble at times, I loves those traits in him.

So, am I more thankful for Noah, then? No. I just have a greater capacity within myself to appreciate how thankful I should be for all of the special people in my life because of the lessons I have learned through him.

Back on top with Excellent Crawling!

2011-11-17T12:42:00.003-05:00

After a couple of "off days", which you may have seen in the last couple of posts, Noah is having a much better program day so far. This morning started off a little slow, but Noah really picked it up by the end. After our patterners left, I had to put Noah's lunch on to cook. Instead of plopping him in his bean bag chair to do nothing while I was cooking, I just put him back on the floor to keep crawling.

Each time I went back up to check on him, he had crawled all the way off the end and turned himself around like he was going to go for another pass! I haven't added it up yet, but I bet his total crawling distance this morning is going to be fabulous.

"So, why so much crawling?" you might ask. Well, Noah needs the movement just like you and I need to move our bodies. It is also the first step of movement for well children -- and don't you think there is a point to the way babies/children develop? Why else do they pretty much all develop the same way? I could go into a lot of they "whys" of children's development, but I'll just say for now that movement is one of the ways that helps the child's body to develop -- and even though Noah is now eight (wow, almost nine!), he still needs to move in the ways that will help his body develop more correctly!

Off Day

2011-11-16T15:21:00.003-05:00

I don't know if it is just the weather, or if Noah might be coming down with a cold, but he didn't have one of his best mornings. So, I made a command decision to take the afternoon off of physical program to do a couple of more relaxing, but very therapeutic activities.

First, Noah got into his respiratory patterning jacket. This is a really cool program that helps Noah to breath deeply on a good rhythm. One thing that kids with cerebral palsy and other brain injury related issues have a problem with is getting those good deep breaths, and when they are relaxing or sleeping, they tend to have a poor breathing rhythm (theorized to be the main reason seizures are more common at night). Noah sleeps in his jacket every night, and spends 1 to 4 hours of awake time in it depending on the day. So he spent a couple hours doing some resting and some good breathing.

This is another cool program called TEAS (transient electronic auditory stimulation -- say that 10 times fast!). It is basically just listening to music -- but this music is special. There is noxious noise in the background (you or I would hardly notice it), but listening to this type of music regularly helps Noah's brain learn to filter out that noise. This helps to lessen his hypersensitive hearing.

So unless Noah's running a high fever, we never just quit doing program -- because there's always so much we can do in just about any circumstance!

Some days are great...

2011-11-15T20:39:00.002-05:00

Noah had a great Monday -- he did some pretty good crawling, especially in the morning, and for lunch he ate what we call "Noah's Mac n Cheese" (it's rice noodle shells and a creamy cashew sauce) without grinding up the noodles. I mashed them a bit so the pieces would be quite as big, but he did a great job without choking or coughing, which was an awesome breakthrough!!

Then today Noah did some decent crawling in the morning, but when I put him in his respiratory patterning jack this afternoon (it helps him take deep breaths on a good rhythm) one of the bladders was busted. And after I changed them, the new bladders would fill up, but wouldn't empty -- which means they would squeeze the air out of him, but not allow him to take that deep breath back in. I spent two hours trying to fix it, which didn't turn out so well. So the really great intellectual program that I had planned during that time only got partially done, and the other things I was planning to accomplish in that time went unfinished.

Some days are like that -- but tomorrow's a new day!

"Typical" Doctors

2011-11-10T14:39:00.005-05:00

I know I sometimes give doctors a hard time on this blog - and I have some good reason, but I wanted to take just a moment to dwell on the doctors who have been such a huge help when it comes to doing Noah's program. The pediatricians we were blessed enough to find in Greenville and now in Newnan have been completely understanding and supportive. Dr. Brian used to tell me that what we did with Noah was a bit "cooky", but it was obviously working.

He and Dr. Jill, Noah and Eli's new pediatrician have both been a wonderful support. I remember going in for Noah's early appointments, and Dr. Brian always looking a bit concerned about several of the things going on with him, but trying to deliver the message in a way that didn't terrify a new mom. Then I remember going to him when Noah was about two -- six months after he started the program, and about six months since we had seen him last. He was astounded, and I swear he had tears in his eyes when he started quizzing me on what I had been doing with him the last six months.

His words were, "This is not the child I was expecting to see." He went on to explain that he had expected to see Noah deteriorate into what looked like "the typical child with moderate to severe CP" with extreme rigidity, respiratory problems, etc. But there was Noah looking much improved over what he had seen the last time we were in his office. And from that moment on, he was sold on what we were doing, and always helped in every way he could.

I hated to leave him behind when we moved to a different state, but then we were blessed to find a new doctor, Dr. Jill, who was the blessing we needed exactly when we needed her. She has a great understanding Noah's dietary issues and is helping us with those issues in a way nobody has before. She sees what we are doing with Noah -- how he "is" compared with how he "should be" -- and has given her full support as well.

So if you are taking your special needs child to a doctor who is satisfied with the status quo, find someone new! These great, wonderful, and sacrificing people are out there, and they are willing to help. I can't promise they can make the journey easy, but they can make it easier.

Thanks Dr. Brian! We miss you! And thanks Dr. Jill! We appreciate all you are doing for us!

Special Needs Christmas Gifts

2011-11-09T13:12:00.003-05:00

In past seasons, I have always gotten Noah at least one switch toy (no, not the kind that Santa gives those children on the naughty list). Switch toys are typical toys that move and make sounds, etc., but the are attached to a big, round button that Noah can push easily to make it go, or light up, or whatever it does. We have a lightning McQueen car, a train, a couple of remote control cars, and even a lady bug that you can put a marker into and draw pictures using the remote control.

Also, Noah loves to read, so we always get him several books as well and encourage family to do the same. Of course we get him clothes and other things that he needs, but this year I am searching for something that he can really enjoy -- I just haven't found it yet. I'd love one of those large wedge mats, but they are so expensive.

Of course I'm in the crowd that wants to celebrate Thanksgiving before I begin enjoying the Christmas season, but I'd also like to get the gifts over with in plenty of time to enjoy the season without rushing around like mad!

Any suggestions on something fun to give Noah?

Ups and Downs

2011-11-08T11:57:00.004-05:00

Lately I have been made mindful of how we began this journey with Noah with all the tests and devastation of what appeared to be a dire diagnosis. I can remember the dread of sitting in the doctor's offices and the pain as they looked at those test and told us what was "likely" to be expected from Noah.

Of course, Noah had a very rocky beginning. Sometimes I wonder how close he came to death in those first hours and days after he was born. We knew he had a brain bleed and brain edema at birth, but there were no clear answers about what that might mean. Initial brain scans had looked promising, so when we saw an MRI at three months of age that showed so much damage in his brain...

Well, I remember breaking down once we got home. I remember a haunting feeling of the unknown. But I looked at that little, smiling child (who according to the aforementioned brain scans should not have been smiling), I made a decision that I would always look at him and not some test. I made the decision that I was going to trust God with those things outside of my control, and therefore, no matter what, it was going to be okay.

There have been many ups and downs along the way. Lots of frustrations try to mar our attitudes and determination, but we continue to maintain our faith in God and be amazed by that funny, happy, sensitive, very smart, and very, very sweet child. So as much as I'd like to say I have strength and that's where Noah gets his, I really know that it is mostly the other way around, and as I said, provided by God.

Healthy Snacks: Easy Banana Pops

2011-11-04T08:34:00.008-04:00

As a part of my "nutrition segment" I wanted to start adding a few healthy options you can add to your child's diet that he or she won't complain about.

Now, if you didn't start your kids off on the healthiest plan, do not go to them with a snack and say, "Here, try this. This is healthy!" Instead say, "How about a popsicle?!" No fanfare, no gimmicks. Offer it to them like any other snack.

I came up with this recipe while trying to get Eli to eat more raw walnuts. Walnuts have great nutrients in them, including those oh-so-important Omega nutrients to help the development of healthy brains. He would eat a couple walnuts, but they weren't his favorite. As you can see from the photo, he likes them in this form just fine.

For these pops, you will need a good, high-powered blender so that they don't turn out grainy. We have a Vitamix blender (thank God for Christmas money!!), and if you can save up for one -- I highly recommend it!! An oster fusion works as well.

Easy Banana Pops

2 Ripe bananas

1/2 cup raw walnuts

1/2 cup apple juice (100 percent juice)

Place all ingredients in the blender and blend on high until a pinch between your fingers is not grainy. One minute is plenty in a Vitamix. May take up to 5 minutes in another blender. Pour into popsicle molds and freeze overnight. When ready to serve, run the plastic mold under warm water until the popsicle slide out easily (30 seconds, or so). Enjoy!!

These popsicles are easy, and they have a nice, creamy texture. Plus, the bananas and juice gives them all the sweetness they need. If you have a really good blender, you can throw in a carrot as well. They blend in nicely, and I bet your child won't even know the extra nutrients are in there!

Allergy Blood work

2011-11-03T11:09:00.004-04:00

Well, we got Noah's allergy profile back, and surprise, surprise (not really) Noah is severely allergic to peanuts. We've known that was likely due to the reaction he had one time to peanut oil on his skin, but it's good to have it confirmed. It doesn't really change anything. We don't let a peanut within miles of Noah.

He was also moderately allergic to egg whites and wheat. We knew about the egg whites as he has had an allergic reaction to those in the past. Wheat was more of a surprise because he's hardly ever had it. There is solid research behind wheat (and milk) for kids with CP that indicates it incapacitates their ability to absorb other nutrients, and since we found that out, he's not had any wheat at all. I find it really interesting, then, that he shows an actual allergy to it (I'm differentiating between an allergy and an intolerance, because there are tons of foods that cause him gastric distress that aren't true allergies).

Then he also had a mild reaction to soybeans, corn, and sesame seeds. It doesn't really surprise me about the sesame seeds. I tried to give him some a few months back and he projectile-vomited it.

Like I said above, it doesn't really change anything (except that we'll be armed with an epipen for the peanut allergy). He wasn't eating any of those things anyway. Now we will go today for the intolerance profile blood work in hopes that we will have more direction on which foods to try adding into his diet.

Halloween -- Finally

2011-11-02T12:30:00.003-04:00

Okay, so it's already Wednesday and I have yet to post the Halloween pictures, so here they are. We have Luke Skywalker and Darth Vader (obviously). The boys had a great time at several different events, and I had a great time watching them have so much fun. And now that we are in the season of thanks, I have to say that I am also kind of thankful it is past. I was exhausted!!

Here's Noah enjoying some Trunk-or-Treat games. He loves carnival games!

And here's Eli enjoying the inflatables.

I know Eli's eyes are almost closed, but Noah and their cousin (the good witch) Riley, are so cute that I had to post it.

This was after trick-or-treating in our Neighborhood. The boys were very happy their daddy made it home from work in time to join in (and so was I!!). We were loaded down with candy (that, of course, Noah can't eat), but it's the norm, you know? Noah doesn't care that he can't eat the candy. He just wants to have fun doing what the other kids do.

On a side-note, Eli could hardly see through the helmet. I ended up having to take it off between each house and plop it back on his head when he got up to each door. It was completely hilarious!!!

Noah's Laugh

2011-10-31T08:46:00.002-04:00

Later today I'm going to post some Halloween pictures of two very special Jedi, but this morning I wanted to say a little bit about what's on my heart. It has to do with enjoying each of your kids for how very special they are. Sometimes you have to find the way in which they are special because it is not immediately obvious.

Noah is not ever likely to be a star quarterback (though -- you know me -- I haven't ruled out that possibility ;-). And even though he is smart beyond belief, I worry that he won't gain enough outward expression to show it to the world. I could make a very long list of all the things Noah can't do (but since I never focus on those, I ain't gonna even for you).

However, Noah has a laugh that, I am convinced, could bring about world peace. It fills me and all those who know him (and I mean really know him) with unspeakable joy. When you make him laugh, it bursts forth as if he's been holding it in all day just waiting for the opportunity to let it escape.

Sometimes, when things aren't going just right, I make him laugh just to realize how bright a place the world really can be. And my favorite way to "make" him laugh is for Eli to walk by and I say, "Eli, go make Noah laugh for me." He does it very happily -- and effectively.

And partly because of his brother, Eli has a heart that defies belief in one so young. So even though Noah can do some amazing things -- things that defy medical expectations again and again. It is something very simple that makes him special.

Look for that special thing in your child, even if it is difficult to find (if you don't get that last part, you don't have a child with special needs). It might be something completely different, but I bet it brings you joy all the same.

It takes a village...

2011-10-29T09:51:00.005-04:00

...To spoil a child? No, it only takes one person to spoil a child, but for Noah we definitely have a village of people doing it. You can see Grandmama spoiling him here -- and I wish you could see the looks on his face as she gives him kisses and tells him how wonderful he is. And if you happen to have an FC board handy, he will certainly agree, "Yes, I am pretty wonderful."

But we also have a week's full of volunteers who come to do some patterning, and in addition they manage to rub on him, tickle him, and tell him how wonderful he is. After all that, who wouldn't believe it?

But with a face like this (even with the puffy, "allergy" eyes), who could resist?

Fall Festival

2011-10-29T09:38:00.004-04:00

Last weekend we took the boys and their cousin to a fall festival at Eli's school. They had a fantastic time -- the weather was fabulous. The sun was out, the air was cool, we had a huge shade tree that covered most of the festivities, and Daddy was even able to get off work early enough to make an appearance.

I have a lot of posts to catch up on from this week, but I thought this picture of Eli enjoying all the festival had to offer would bring in the Halloween weekend nicely.

Alternatives

2011-10-25T11:29:00.005-04:00

As I have mentioned in previous posts, I regularly try new foods with Noah to see how well he tolerates them. Sometimes we have great results, and as I have recently posted, sometime we have not so great results. But we have to keep trying, and I am very hopeful that the cream of buckwheat that we tried yesterday will be a success story.

I really like this creamy buckwheat product, and it makes a great hot cereal for anyone with gluten allergies/intolerances. It is one of my favorites! And when I tried it yesterday for Noah, he really seemed to enjoy it too! I saw no ill effects on his tummy, so I feel pretty confident trying it again in a couple days.

So far Noah has not tolerated sunflower seeds, and he couldn't use this product anyway because it does contain some sugar. However, I was looking for something that I could make for Eli for lunch tomorrow that doesn't need to contain a cold pack because he is going on a field trip. We cannot use peanut butter (or any peanut products) because Noah is very allergic to them. We don't keep any kind of peanut products in the house.

I remembered that some friends of mine use this product, and if your child goes to a peanut free school, you might like to give this product a try as well. It is a really great replacement for peanut butter in taste and texture. It is lightly sweet, and after you stir it the first time, keep it in the fridge so it won't separate again.

Chinese Dinner

2011-10-21T12:32:00.003-04:00

After a very busy day and little time to start dinner, we decided that everybody could use a little Chinese food. Well, Noah, with his very special diet, ate right before we left-- he just went for the fellowship. Anyhow, everybody got a fortune cookie, of course, and most of us got advice about how we needed to work hard or stay humble, but this was Noah's:

Gotta love it!!!

Defying the Odds

2011-10-20T12:30:00.003-04:00

I have an admission to make. Can I just say that I have secret satisfaction in being told that something won't or can't happen? I don't know how many doctors have told me that Noah wouldn't do this or wouldn't ever be able to do that. Early on it was things like gaining weight without a g-tube. Or that feeding Noah 'regular' foods would cause his bouts of aspiration pneumonia, so it can't be done. Or (the most common) that Noah wouldn't ever be able to crawl on his own.

It's not like we haven't seen plenty of encouraging, wonderful doctors. It's just that the less positive are more common. Of course they generally only get one visit out of us.

Is there a little part of me who would like to go back to each of those nay-sayers and rub their noses in the fact that we succeeded in an area that they said was impossible? Hmm. I don't think I'll answer that one. Let's just say that I have grown to appreciate the times when we are told something can't or won't happen. In my head I say, "Ha! We'll see."

But I may start saying, "Care to make a little wager?" Cause, you know, I could always use the extra cash. ;-)

Walking

2011-10-19T12:56:00.005-04:00

We still have a lot to work on with Noah's walking environment, but here is a snap of him giving it a good try. You may notice the braces (known as AFOs) on his legs -- they are just too restrictive, and he won't do a whole lot in them. I don't know if it is just too uncomfortable, or if they just feel too funny to move in, but he mostly just stands still.

He did start putting a little pressure in his feet, however, and he took a number of steps, which I was really proud of him for trying. It was just a little experiment, and it leads me to believe that he will try to walk with work boots on. The sell them at Kohl's, so we will be picking up a pair soon.

For his perseverance, however, I did put him in the gravity free environment. If you saw the video I posted a few days ago, you know the kind of reaction he had to that. I don't know who has more fun -- him spinning, or me watching him!!

iPad Apps for Special Needs

2011-10-17T13:04:00.003-04:00

Noah's Grandmama has an iPad, and she is nice enough to lend it to us during the day so that Noah can use it to read. It's wonderful. We can download books of all kinds for Noah, and it enlarges the words nicely for his vision issues, but he still gets the pictures, which are really important in books of science and history.

Noah uses facilitated communication to communicate his needs, and wants (and his poetry, etc.), so I have been scouring the apps store looking for something that will allow him to easily do this on the iPad.

Here is what I don't understand. There are a ton of free apps that do a lot of complicated things. There are apps for 99 cents that have great graphics and spread fun an joy to angry bird addicts everywhere. I even purchased a GPS for my phone that works really well for 9.99. So explain to me why an upgrade for the Verbally app that allows special needs people to type and "speak" costs 99.99?! The basic free Verbally doesn't do a whole lot, and, honestly, I don't know if the more expensive one will meet our needs in the least.

Let me know if you have found any apps that work for facilitated communication. I don't really need it to speak for him -- I can read it just fine -- I just want something on which he can type where the letters are large enough for him to see and I can arrange a few words (like yes and no) in a way that works well for him.

Super Sonic Fast!

2011-10-17T12:26:00.003-04:00

I know I've posted recently about Noah doing some really fast crawling in his new shoes. He's going for a time of 4 meters in 4 minutes, which he has now done several times. Well, this morning he blew it away by crawling 4 meters in 3 minutes! Way to go, Noah!!!

Walking Update

2011-10-14T11:11:00.002-04:00

Well, we did get everything finished so that we could try Noah doing some walking, but we have found we need a little more trial and error -- there are still some things to be tweaked.

First of all, the main thing we were working on was the "Katoh Device", which is the thing that Noah puts one leg on each side of to keep his feet from crossing. It turns out that Noah decided that he can't move at all with that thing between his legs. When we took it away, he started walking across, but he did cross his feet a little.

And while the fivefinger shoes are great for his crawling, he needs something a little more substantial to keep his feet more flat so he isn't walking around on his toes. So, several things to fix, but he did do a little walking today, which I love to see even if it is not perfect (yet).

Gravity Free Environment

2011-10-12T17:06:00.004-04:00

Still working on the final touches of the Gravity Assisted Environment (the one he will walk in), but I was able to get Noah in the Gravity Free Environment for a little while this afternoon, and it is something worth seeing. He laughs so hard, that it makes us all laugh!

Almost there!

2011-10-12T14:37:00.002-04:00

I know I have been posting about getting this done for a while, but I am just a step or two away from having the gravity assisted walking device ready for testing (i.e. putting Noah in it and letting him walk).

We got the floor evened out, and this morning while Noah was doing some crawling, I finished cutting the vinyl and securing it atop the foam. Now I just need to get some caulking foam on the bottom to give Noah something to push against and then make sure the "puppet strings" are the right length to have his feet on the floor.

Wow! This has been quite the project!!

Backfire

2011-10-11T15:36:00.004-04:00

My 10th grade English teacher used to quote Steinbeck's "Of Mice and Men" every time someone told her they had a problem with their homework: "The best laid plans of mice and men do often go awry."

Yesterday morning I made Noah a flat cake using tapioca, ground macadamias, and mashed acorn squash -- all ingredients he tolerates well -- but I cooked it in coconut oil, which I haven't used for him before.

As a mentioned last week, I have been trying to get more solid foods in his diet. The flat cake cooked up well, had a nice texture, and I rounded it off nicely by covering it in strawberry "syrup" (i.e. pureed strawberries). He ate it just as well as he had the oat flour pancake.

However, he would not eat the rest of the day because his stomach was hurting. I try to regularly to add new things to his very limited diet, and sometimes it backfires. Evidently we can cross coconut oil off the list.

We've lost two days of program, which is the chance we take trying new foods. The good news is he is eating well today, and we look forward to starting back up tomorrow.

Because as Anne Shirley said, "Tomorrow's a new day with no mistakes in it!!" I much prefer Montgomery to Steinbeck.

Nutrition Part Two: Choices

2011-10-09T17:32:00.004-04:00

Yes, I said I would post this yesterday, but better late than never, right? As I said, I wanted to start with some basic ways you can get your children to eat healthier. My first suggestion is so obvious that it feels a little silly -- and yet many people struggle with this simple rule.

I can't tell you how many people I have heard say, "My child is so picky, they just won't eat anything healthy!" I usually just respond with something generic like, "Oh, yes, that is very difficult." I leave it at that, but it is difficult for a while. It might take a few tantrums, but if you took the world's pickiest two year old and put them on an desert island with nothing but healthy foods, THEY WOULD NOT STARVE TO DEATH!!

Which brings me to my first suggestion: Get the junk food out of your house, and replace it with healthier options - quick and easy options like apples, raisins, raw nuts, grapes, carrots, etc. Also find a few healthier options for cookies and muffins that incorporate whole grains and much less sugar. Replace the bad with something better. Then put the healthiest options out on the table. It never hurts for your kids to snack on fruits and veggies. Get a tray that fits in the fridge that you can keep out during the day.

If your child has the option between a cookie and an apple, they are going to choose the cookie. Take the unhealthy option away, and after a while they find they actually like the apple. Also, they'll see the healthy options on the table and munch on them without asking you for anything.

This also means that YOU have to choose the healthier option as well. Never think that you can get away with eating a cookie while your kid eats an apple. Children need to see their parent making healthy choices as well.

Solid Food!!

2011-10-08T09:59:00.005-04:00

One thing I have worked on through the years (or at least the last several) is getting Noah some solid foods here and there. It has always been difficult for him, but I have always known that it is important to try.

It is also difficult to come up with the right foods to try it with because his diet is so limited. I have been thinking about it, though, and this morning I made Noah some oat flour pancakes with blueberry "syrup" (which was just frozen blueberries microwaved and blended smooth in the blender). I make pancakes fairly regularly, and I thought Noah might like something that would make him feel like he was eating the same as the rest of us.

Not only did he LOVE it, he at the whole thing with no problem at all. I'm not saying he chewed it up perfectly, but he swallowed it easily (and very, very happily). This may seem like such a small thing, but after so many years of grinding all his food and everything looking the consistency of oatmeal, this was a breakthrough!!

The picture below is of Noah when I asked him if he liked his pancake. I think that is a yes!

Later today I am going to add to the Nutrition segment that I started last week. I'll be going straight into some suggestions of how to get your kids to eat better!

Volunteers and Fantastic Crawling

2011-10-06T11:09:00.004-04:00

I want to take a moment to let my wonderful volunteers know how much I appreciate them!! There are quite a few parts of Noah's program that I couldn't do without you guys, and you are all such a pleasure to have over! I cannot say enough how much I appreciate you giving your time. Thanks so much!!

This picture is of a couple of our wonderful volunteers (Mickey and Mary) cheering Noah on while he is crawling. He LOVES the attention! Now you can see why he is so spoiled. He once told me using facilitated communication, "Everyone who gets to know me loves me!" And it is so true.

The really great news is that Noah is doing great crawling. He smashed the "crawling victory" time of 12m in 4 minutes yesterday afternoon. He did just over 12m in 3 minutes and 48 seconds. Way to go Noah!! Pretty good for a kid "they" said would never crawl!

Walking Update

2011-10-05T08:58:00.005-04:00

We haven't gotten the gravity assisted walking started yet because we needed to make a few more adjustments. We discovered that the floor that Noah will be walking on has become very uneven over the years, and we are working on getting that fixed before we get him started.

When he walks, he is in a harness that is connected to a rolling dolly above. He is connected by ropes, and in the beginning only carries a portion of his weight -- making it gravity assisted. So if the floor is an inch lower in one area, he's not going to be carrying much of his weight.

However, we should get that problem solved today thanks to my mom's string and weight method. She's a very smart lady. Hopefully I'll have some pictures of Noah walking up soon!

Weekend Fun

2011-10-03T08:16:00.011-04:00

We like to have a little fun around the clock -- it's kind of hard to keep Noah from having fun. But as we start off the week, I thought I'd share a couple of pictures of weekend fun time.

This is the boys with their cousin a few weekend back having some together time. I love this picture because it catches parts of each of their personalities.

Here are the boys this weekend enjoying the cool weather at Grandmama and Granddaddy's garden. They get to play with Aunt Wilma's dogs and help plant some seeds.

A Word About Nutrition

2011-10-01T09:27:00.005-04:00

If there is one thing I have learned a whole lot about from many of Noah's struggles, it is nutrition, and what nutrition really means. And while I don't always make perfect nutritional choices, I do make a real effort to choose the majority of the foods I eat for their nutritional content and to get a lot of those foods in my kid's diets -- one way or another.

Let me give you this warning, however: Once you starting eating a lot of highly nutritious foods, it is difficult to go back to eating junk. It just makes you feel too bad.

I will say this, however. You know all those books that tell you how many grams of this you need and how many grams of that you need? They tell you that "this certain food" is a miracle that will make you thin and heal all your diseases? Or a miracle supplement? Throw them away!!!

The truth is that most of those books complicate something that is not complicated. Even a lot of the really good books about eating healthy (and I've read 30 or 40) complicate the issue. "Oh, no!" you've been conditioned to believe, "eating healthy is very complicated."

No, it's not. In all those nutrition books I've read, there are some things on which they all agree. I'm going to give it to you here in a nut shell. Over the coming weeks I'll make some suggestions for how to do this and ways you can get your kids to do it, but for now, here it is in simple terms.

Eat a lot of vegetables - especially those with lots of color. Eat a lot of fruit -- any fruit!! Eat beans and legumes every day (lentils, black beans, pinto beans, there are lots). Eat whole grains in moderation. Eat a small handful of raw nuts or seeds every day. Cut your red meat consumption. Don't eat sweets every day (when you're craving them, grab some raisins or your favorite fresh fruit). Stay away from processed foods. Minimize servings of bread.

And the number one thing you have to do -- get the idea that you don't like those foods out of your head. Eat them anyway. After a while you'll find you start to like them in spite of yourself. Remember that most everyone with obesity will one day have one of the dreaded diseases with which so many are suffering in this country, and remember that a good many people who are not obese will suffer from them as well.

Super Fast!!

2011-09-30T11:07:00.004-04:00

That's what I'm going to start calling Noah crawling in his new shoes. It was awesome! He cut his crawling time in half!! He came very, very close to the "crawling victory" time of 12 meters in 4 minutes -- not once, but three out of the five times he crawled this morning. Awesome!!

Vibram fivefinger shoes

2011-09-30T07:33:00.001-04:00

I've been talking about them... Well, here they are. We got them in last night, and we were (eventually) able to get his toes in them!!! I am very excited to see how well he crawls in them this morning.

How can something so ugly on an adult be so cute on him?! Oddly enough I realized as I was putting them on that his left foot is about a size larger than his right. Luckily we got them a little bit large (mainly because it was the smallest size they had). It gives him some growing room, which is a good thing.

Gravity Assisted Walking

2011-09-29T08:50:00.000-04:00

Let me start by saying we had one of those days where Noah laughed at everything. By the end of it all, I think he was just laughing to make us all laugh just so that he could laugh harder. He was a very silly boy today!!

On to other topics, the gravity assisted walking device is coming along. It may not look like it yet, but our modifications are just a step or two away from being finished. I'm thinking by the beginning of next we might see Noah walking in it again! I'm really hoping this goes well, because Noah loves it so much and it has been so long since we've been able to do it.

We should get Noah's fivefinger shoes tomorrow, and have most of the gravity assisted device ready. Looks like we'll have it just in time to have him tackling his daddy again this weekend!

Angry

2011-09-28T18:20:00.005-04:00

People who get to know Noah often ask me if he is always happy. Well, as you can see above, he's just a normal kid. He gets mad when he doesn't get his way, and the number one thing he gets mad about is stopping the car. He knows all the routes to the places we most commonly stop, and he starts whining well before we get there -- home, Eli's school, the doctor's office, etc.

But as you can see from the picture below, it didn't take too long after we got in the school pick-up line before he was smiling again (sorry about the blur -- he was laughing and wiggling). Of course it takes him a little longer when we get home and out of the car.

Electrodes

2011-09-27T15:00:00.005-04:00

One of the new, really neat things we are doing with Noah's program this time around involves using a TENS unit to deliver transdermal magnesium to some of Noah's more rigid muscles. You understood every word, right?

A TENS unit supplies low-level electrical current into muscles and nerves. This helps the muscle to relax, and a lot of people use it to control pain in various places in the body. Transdermal Magnesium is basically a magnesium supplement that delivers the much-needed mineral through the skin.

We have been using the transdermal magnesium for quite a while to increase the magnesium being absorbed into Noah's red blood cells. Magnesium reduces rigidity and controls seizures -- if it is well-absorbed into the body's red blood cells. It is really wonderful stuff that has helped Noah tremendously.

What is really cool is that lately we have been using these to things together to reduce Noah's rigidity in specific muscles -- mainly the hamstrings and adductors that cause problems for his hips. The magnesium has a positive charge, and it follows the charge of the TENS unit directly into the problem muscles. Cool, huh?

Now, I will only add that if you have to use the electrodes for the TENS on a regular basis, NEVER buy them at a store. The arm and leg they will cost you is not worth it. I recently found out that a friend of mine who uses TENS gets her electrodes at the store, and pays about 60 bucks for SIX electrodes. I pay about ten bucks less for 40 electrodes. Google them and you will find a ton of stores online. Just make sure you get the reusable ones with cloth backs. The foam ones don't last as long.

Jumping

2011-09-26T13:07:00.003-04:00

It's not the easiest thing in the world to do, but Noah loves it so much, we try to do it when we can. Noah loves to jump on the trampoline. The next time you go out to jump on the trampoline (as I am sure you do regularly), take a 35 pound bag with you, and hold it in your arms when you jump. That's what we are doing when we jump with Noah -- except that Noah gets excited and wiggles and kicks his feet.

And it is so worth it. Just look at his face! He laughs and squeals, and you love it so much, you just have to push yourself to the limit to let him do it!

Toe Socks

2011-09-25T17:43:00.003-04:00

Okay, so here's Noah modeling his toe socks (by the company Toesox). Aren't they the cutest? We wanted to try them to see if they would help keep his toes a little more spread out (which they do), and help him to use them better while crawling. I also wanted to see if I could get them on his feet.

See this was a first part trial for something even better. Noah is going to start his walking program again soon, and we needed something to keep him from walking on his toes, but that weren't as restrictive as the typical AFOs (which are braces that keep the feet flat). He won't even attempt to walk in AFOs.

Anyway, we heard about the Vibram Fivefingers shoes (which, by the way, are hideously ugly, but evidently feel wonderful on your feet). We thought this might be just what Noah needed, and since the toe socks were so easy to get on his feet, I have ordered Noah some fivefinger shoes. You can see them by clicking here. We have great hopes that these can help Noah with his walking and crawling. We'll let you know!!

Update

2011-08-29T08:52:00.004-04:00

Okay, so it has been forever, and I still haven't done an update about Noah's program!! So here it is. Noah is still doing some good crawling, and having a great time with it! I will get some pictures soon. We have a ton of new volunteers helping us to pattern, and that is going well, too. We will soon be adding gravity assisted walking again as soon as we finish some new equipment to go along with it, and we are very excited about this!! It has been several years since his hip problems have kept him from the walking program, and we are eager to get him going on that again. His hip is doing really well for the most part. He never has any noticeable pain in it, nor does he complain about it -- and considering the state he was in a few years ago and the medication he had to take at the time (he's not taking any medication for it!!), that is nothing shy of a miracle!

We are adding other parts of the program here and there as we go along, and we look forward to seeing the results of those things as well!

A vacation pic

2011-07-23T08:08:00.005-04:00

Okay, so it turns out my mom took a couple of pictures while we were on the beach, including this one of Eli. It is so like him! Enjoy!

Hopefully I will have some good new program ready to blog about soon. Noah has been doing some fabulous crawling lately, and between his program and Eli's activities, I have hardly had time to eat.

Vacation

2011-07-17T21:43:00.002-04:00

You know, they say that vacation is nice, but it's always good to get home? I could have stayed a month!! We spent the last week watching the boys play in the sand and the waves and had a blast doing it!! But can you believe that we didn't get a single picture!!!

The weather was a little bit of a factor -- we never knew when we got down to the beach whether or not it might start pouring down rain fifteen minutes later, so we hesitated to bring the camera down. But I don't think I have EVER taken a vacation where we failed to get pictures.

Anyway, we are back home and I am looking forward to meeting the slew of volunteers that Marie has found for us. I just love people like Marie, and Janice, and, well, anyone else who can just get things done!! We need the volunteers to really get Noah's program going full swing, which I am very excited to do now that we are home!

Has anyone else noticed that I have used way many exclamation points in this post!?!

Getting Started Woes

2011-07-01T10:44:00.004-04:00

Okay, so here it is, July 1st, and I have yet to let you know about Noah's new program. Well, there are two things that can happen when you get home with a great new program...

1. You come home, get things going immediately, and the program takes off with a bang, or...

2. You come home and have to get past some frustrating problems before things really get going.

Right now we are working through number 2, and the biggest difficulty is mouth sores. Noah is having a really hard time with sores in his mouth, and we are trying to figure out why. It makes it difficult for him to eat, which means he's not getting enough energy to go full tilt into his physical program. We've been working with our folks in Philly and our pediatrician here (whom I love, by the way), and I think we've come up with some good solutions. Hopefully we will get past this problem and work into some really good program.

The other thing we are working on is getting the volunteers we will need for this new program. We have some new patterning (and old), which requires two volunteers instead of just one. We are at the disadvantage and advantage of living in a new place. Disadvantage that we have to start from scratch, but advantage that we have a completely unused pool to work from.

Another note about 1 and 2 mentioned above. It is my experience when things start off really well, the problems come up later and you take several steps back when you have to back off the program. When you have to start off more slowly, you can fight problems as they come up and there is generally a more steady improvement.

So overall, I feel really good about our progression. Not to mention we have our beach vacation coming up. I like that we are getting our problems out of the way before we have a great week. Then we can start back strong!!

Gluten Free Bread (no milk, soy, eggs, etc. either!)

2011-06-21T09:32:00.005-04:00

I have tons to tell you about as far as Noah's new program goes, but between all the unpacking, cleaning, organizing, and trying to recruit more volunteers, I just haven't had a chance to put any one of those things down in the blog. So I thought I'd add in a new gluten free recipe.

Bread is probably the hardest thing to duplicate without wheat and gluten. In fact, most bread recipes add EXTRA gluten to the wheat -- if you've ever gotten a stomach ache after eating the bread that claims "High in Protein," that's probably the tons of extra gluten added as gluten is a protein and difficult for even the gluten tolerant folks to digest.

But back to the point, I thinkthe hardest thing about finding/making a good bread sans wheat is the texture. I've had breads made with various flours, and they are usually either hard, grainy, dry, chewy, etc., or some combination of those problems. I have found, however, in many baked goods that garbanzo bean flour (or chick pea flour) has an exceptional texture, so I decided to make yeast bread out of it to see how it turned out. It actually turned out really well!

It is good in a meat sandwhich, peanut butter sandwhich, as toast, or even as an addition to dinner. My little gluten-free fellow (now 6 years old), was really excited about it, having tried other breads for sandwiches that just weren't good. He says it tastes like corn bread, but has a smoother texture of regular bread (not his exact wording).

Anyway, here is what it looks like, followed by the recipe:

Ingredients

1 1/2 cup garbanzo bean flour

1/2 cup potato starch/flour

1/4 cup tapioca flour

1 teaspoon xanthum gum

1 1/2 teaspoon salt

1/2 cup warm water

1 tablespoon yeast

2 tablespoons honey

1 cup warm water

3 tablespoons olive oil

Mix 1/2 cup warm water with yeast and honey (in a glass measuring cup is fine). Stir until dissolved, and let sit for around 10 minutes. Meanwhile, stir or sift first five ingredients in a mixing bowl. Once lots of bubbles have formed, add the yeast-honey-water mix into the dry ingredients along with the remaining water and oil. Stir with a spoon until all ingredients are well mixed and there are no clumps (3-5 minutes). Cover with a cloth and place in warm location to rise -- about 1 hour -- and preheat the oven to 350 degrees. After the hour, pour the batter into a greased or sprayed loaf pan, stir just a little, and allow one more rising for 15-20 minutes, or until the loaf reaches your desired size. Place in the oven and back approximately 25 minutes until the top is a nice golden brown.

The texture of this bread is really great -- which is, after all, what kids seem to find most important.

New Program

2011-06-17T18:50:00.003-04:00

My brain is full!!! We are now driving home from Philadelphia, and we are very excited about Noah's new program! As they always seem to find, there are some new techniques for tight muscles that we have never done before that show a lot of promise. We are excited about Noah's physical program, his physiological program, and his intellectual program -- but right now my brain is so full I don't think it would make any sense if I tried to write it down!

I look forward to sharing with you Noah's new program when I finally get it all worked out and put together in my head!!

Setting Goals

2011-06-16T07:30:00.002-04:00

In the program that we do with Noah, we are always setting goals. Crawling goals for him to reach by the next visit and goals to set in the first few months. We set goals for his physiological programs, and we set goals for his intellectual goals. The ultimate goals set are physical superiority, physiological superiority, and intellectual superiority. In other words, not only wellness, but well with above average abilities in all areas. Too high, you say? Well, what is the "cost" of goals set so high? Yes, you may not reach them, but when they are that high, isn't even movement in that direction a victory?

Over the last couple of days we have been in lectures teaching us about the whys of why we do the program. Being a "senior" family on the program, we've done this lecture series before, but we noticed that they have made some subtle, but interesting changes in the lectures. They've change because of the research they do here, and therefore, we really got a lot out of these lectures. But one thing that Janet Doman said yesterday really struck home for me. I found it very profound in what we do with Noah, but also profound in life. She said this:

High goals are cheap -- they don't cost us anything. Low goals are costly -- and they can cost the brain-injured child their lives.

I am excited about what we are going to see in the clinic over the next couple of days. Very excited.

Clinic Day 1: Evaluation

2011-06-13T23:24:00.002-04:00

There are so few great people in the world today that to find thirty or forty in one place is truly special. These are people who do not think of themselves as special, but as privileged. Privileged to work with the children that others shy away from. Privileged to have the patience that allows them to watch mounds of hard work pay off in seemingly small increments. Privileged to think that the parents of these children are amazing, when really, they just love their kid.

This isn't just an elite staff of educated people who walk around thinking great thoughts. They're the kitchen worker who, like a mom, finds you blueberries because they are your child's favorite. They're the cleaning staff who stops to have a word remembering your name, occupation, and home town even though you're only there twice a year. They're the Doman grandchildren stopping to ask how your child is doing and truly understanding what you are saying because they have lived it their whole lives never realizing what they do is great.

Walking around the grounds of IAHP is liking walking in a fairy world for a parent like myself, that is, the mom of a brain injured child. It is a place I know my child (and any other child, brain-injured or not) will be treated with admiration and respect. Questions will be addressed to him with answers expected, but not rushed.

It is a place where I, with a cross around my neck, can sit next to a woman in a burqa engrossed in conversation about our hopes and dreams for our little brain-injured children encouraging one another in a world that so few people understand.

So, being here, and seeing the areas that Noah has improved, and looking at the areas that Noah needs improvement is a blessing unlike any other. I cannot wait to see what our new program will be like. I can be sure that when the staff sits down tomorrow to address each child here this week, it will be decided with great care and attention to detail with great consideration to what they saw Noah do today and what we discussed has happened with Noah in the past year. It will be the best of all their past and present research, and it will produce miracles -- even if they take a little time.

Hotel Room Fun

2011-06-12T09:43:00.003-04:00

Noah is like any other boy his age -- he loves to wrestle and play rough. It's funny because I get asked by a lot of physical therapists and doctors if Noah is afraid of quick movements -- and it always makes me laugh! Play time with Daddy was so fun, I had to video a little bit to share. He needed some good movement after all day in the car, so this is what they did:

Noah's Favorite Thing

2011-06-11T11:17:00.002-04:00

Here he is -- riding and loving it. I had just asked him if he was enjoying the drive. The picture's a little dark, but I think you can see his answer.

Philadelphia IAHP Trip, June 11

2011-06-11T10:08:00.002-04:00

I know I haven't posted in a while, but I thought everyone would like to know that we are headed back up to Philly!! We are really looking forward to seeing our good friends in the clinic and getting some new ideas about what we need to do with Noah.

There are several things I would like to see us as to Noah's program. For the physical program, walking is the number one thing I want to add back on. Walking in the Gravity Assisted Environment was always one of Noah's favorite physical programs, and I think it will really help his overall improvement.

Physiologically, I am looking forward to our visit with the very innovative and "out of the box" physician that we will see on Thursday. His name is Dr. Cheikin, and he always has some new supplement that helps Noah tremendously with whatever physiological problem he is having. He and the other doctors look at a huge panel of blood work that we have done before each trip, and they are so experienced with kids like Noah that they have a great understanding of what a slightly low magnesium level or a slightly high red blood cell count means for Noah whereas the typical doctor might overlook that number.

Anyway, we are very excited, and maybe we can start uploading some pictures soon.

Gluten Free Muffins

2011-04-15T16:28:00.008-04:00

Okay, so at least mostly gluten free. There is that argument of whether or not there is a very small amount of gluten in oat flour or if the oats are sometimes contaminated with wheat gluten at the "flour making plant." Anyway, most people who are gluten sensitive don't have problems with oat flour.

This is a slightly modified version of a muffin recipe from the cookbook I blogged about on Friday. I don't usually do it because my husband doesn't like the walnuts, but a quarter cup of walnut pieces mixed in the with dry ingredients works great, too.

The picture below is of the even more healthy recipe that I came up with -- and people still really like it. I'll share the that recipe another time.

Banana Oat Muffins

2 1/4 cups oat flour

1 T arrowroot powder

2 t. baking powder (look for ones that don't contain foods you are sensitive to!)

1 cup apple or grape juice

2 T vegetable oil (canola or grapeseed works great)

2 T honey

1 Ripe banana

Preheat oven to 400. Combine dry ingredients in a medium mixing bowl. Mash the banana with a fork and add to the flour along with the remaining ingredients (I like to mix my wet ingredients together before adding them to the dry. Mix with a spoon just until all the flour is moist, and spoon evenly into 20 cups of a small-sized, oiled or sprayed muffin pan (leave the last four empty). Bake for about 10 minutes. Check them at 8 min, though -- you do not want these to overcook. Use a fork to flip the muffins on their sides to cool.

I have yet to find a person who does not like these muffins, so feel free to share them with your gluten-capable friends.

Gluten Allergies

2011-04-15T07:30:00.000-04:00

It is astounding to find the number of people who are finding out they are sensitive and/or allergic to the gluten in wheat. I guess it was about seven years ago now that I started having to become creative with my recipes to keep out gluten and all other sorts of normal ingredients out of our food. As a matter of fact, Noah is sensitive and allergic to so many foods that I learned to make a darn good muffin using only a few ingredients -- and none of them typical. I can come up with a cookie recipe on the fly tailored to what Noah needs on a given day -- and have them turn out tasty and well-textured.

I'm not bragging. No, wait, I am bragging -- but I'm doing it to say that all it takes is a little practice and starting out with the right cookbook. When I first started, it took me forever to gather up all the right ingredients and put them all together just right -- and I turned out with quite a few inedible trials. It has been said that necessity is the mother of invention, and I say few inventions come about without a great deal of perseverance. Anyway, that leads me to today when cooking takes me half the time (or less) than it did when I started, and the results are usually good. Often they are surprisingly good. Oh, and did I mention I can do it spending a lot less money than I did when I first started -- that's another blog post.

Okay, so now to the point. If you have recently found that you have gluten and other allergies, this is the first cookbook you need to start with. And it's not just a cookbook. It is a fabulous teaching tool that will help you to understand food allergies more clearly as well as why certain ingredients are used and how they can be put to best use.

It is called The Complete Food Allergy Cookbook (and a tag line that I can't read from the picture because I have spilled so many ingredients on the cover -- thereby proving it is well-loved). It's by Marilyn Gioannini, and you can find it on amazon.com. Happy gluten-free cooking!

Cute Pics

2011-04-13T09:27:00.007-04:00

So the other morning Eli asks me, "Can I hold Noah?" It was out of the blue. I said yes, of course, so I put Noah in his lap and gave a little support behind Noah's back. Then Eli said, "Take a picture!" He looked at me like I was missing the obvious. Dad pulled out his phone and snapped this picture. Sweet boys. This picture is of Noah on his first golf outing. Noah's favorite thing to do is ride in a car. He loves the movement as well as looking at the other cars and trucks -- he sighs when you get to a stoplight (poor long-suffering creature), and he cries the moment he sees us getting close to the house (trying to figure out who has spoiled him so thoroughly). Well, his new favorite thing to do is ride in a golf cart. We strapped his car seat snugly into the golf cart, and the moment it took off he squealed and laughed until it stopped. This went on the entire two or three hours. And oddly enough, he didn't cry when they stopped. Peepaw enjoyed watching Noah so much that I think he could have cared less about his game -- that day, at least. Eli just loved hitting his new orange golf ball (orange is his favorite color after all -- it's the little things, you know). We will definitely be doing this again soon!

Classic eye-roll

2011-03-23T13:26:00.005-04:00

Last night my father was joking about having to leave a place because people were bragging on him too much. He said he was getting too much attention and just HAD to leave. We all had a little chuckle over it (especially knowing my father), but when I turned to Noah and asked him what he thought about it, he flashed a little ironical grin and gave me a perfect eye-roll.

Now, I know a lot of people don't get all that excited about their children rolling their eyes, but I love any chance for Noah's good humor to shine through in an expressive way.

On another note, I know I have mentioned before how Noah loves to ride in the car, and fusses and cries when we stop. He would actually start crying within a couple of miles from our old house knowing that we were about to get home and get out of the car. Well, it didn't take long for Noah to get used to the routes coming into our new home, as he has demonstrated the last several times we ran errands. It's what you call, "Too smart for his own good (and for our ears)."

Oh, no you didn't!

2011-02-23T08:00:00.000-05:00

Some people need to spend a little more time thinking about what they say before they speak. One of those people spoke to me last week, and I still feel irritated every time I think about it.

I was feeling a bit under the weather (never the time to say something ridiculous to me), and as we have moved, I had to go see a doctor I have never seen before. I was ushered into a room by a very nice nurse, and we began to discuss what was going on with me as well as a bit of my history. When she asked me what I "do", I mentioned to her that I have a special needs child and that I do a special program with him at home.

Her response was, "Oh, that puts an extra burden on you."

I responded to her that my son was great and a joy, and she continued treating me like I was living under some miserable circumstance. I gave up trying to convince her that I live a very happy, fulfilling life, and finally she left.

Noah is a lot of things. He is a joy; he is sweet and funny. He is a lot of fun, and he is even a lot of work. But he is not, nor has he ever been, a burden.

Sleepy Boy

2011-02-22T11:24:00.005-05:00

Okay, so I have been a terrible blogger lately. Sometimes when you have had a big change (like moving to a different state), it is difficult to get all the "normal" things you do (you know, in my completely "normal" life) going again. So this week my focus is keeping my friends (especially those who have been calling me with complaints about it) "in the know" about what is going on with Noah.

Well, as you can see by this photo, Noah has been a bit sleepy lately. Yes, I put him on the floor for his third or fourth crawling session, and after a couple minutes of his going nowhere, I discovered he was asleep! I woke him up and told him to crawl, but all he did was turn head head toward me, smile slightly, and close his eyes again.

I'm not sure what is causing this fatigue, but it may have something to do with the move. He has been waking up a lot at night and having what my husband calls, "A little party." He will laugh, kick his feet, and wave his arms until all his stuffed animals have been knocked off his bed. Sometimes he even manages to get his feet kicked over the side and knock over his monitor. When I get in his room to set it back up, he gives me this impish grin that seems to say innocently, "Oh! Mom, I'm so surprised to see you here." Yeah, right. You knew exactly what you were doing you little rascal.

I try not to respond, you know -- waking up at 3AM to play is not something I want to encourage. Of course if it wasn't 3AM (or a similar sleepy time), it would probably be much harder not to laugh.

I've been in touch with his doctors in Philly, and I'm sure they'll help me get it figured out -- they always do.

Birthdays and moving

2011-01-30T19:00:00.002-05:00

Noah has been eight years old for a little over a month, and I am just now posting the birthday pictures!! He had a great birthday, and I cannot believe he is eight years old! He is doing well, but we have had a really crazy couple of months.

For those of you who don't already know, we have moved back to Georgia. It is a little bitter-sweet because of all the wonderful friends that we won't see as often, but it is nice being closer to family for a while.

We are still spending a lot of time getting Noah's program up to scratch, but I wanted to let everyone know how Noah is doing.

Okay, so I can't get the birthday pictures to upload. I'll have to try it again later.

Visiting Santa

2010-12-15T20:35:00.002-05:00

The boys were so excited about this visit they could hardly contain themselves. They had a great few minutes with the man in red. He was very jolly and amazingly enough knew a lot about Furman Football.

This was the perfect place to see Santa because it wasn't crowded, the boys got to spend a good bit of time with him, and he was fabulous with Noah. He and Eli had quite the conversation, too.

Everyday Miracles

2010-11-10T08:50:00.003-05:00

This is a somewhat recent video of Noah crawling. It is not the best angle because it shows his left side, which is the side he doesn't use as well. It is also not his best crawling session, although it is decent enough. I just thought people might like to see something that quite a few doctors and other specialists (even just a few months before he did it) said he'd never do. Well, actually, they seemed to think we were lunatics for even suggesting the possibility. Huh... maybe so,

Halloween 2010 -- Super Mario Brothers

2010-11-01T18:42:00.007-04:00

A few pictures from the big night.

Here are the Mario Brothers (Mario and Luigi) after first getting ready to head out is search of candy and fun (Luigi was more after the fun).

In addition to trunk-or-treating (which was really trunk AND treating, though admittedly it doesn't sound as witty), there were some very nice fireman handing out little fire hats and posing for pictures. This one in particular seemed to have some experience with special needs kids, because he was great with Noah. It's a shame my camera wasn't working too well.

Even a mustache that big couldn't cover up THAT smile (though it certainly gave it a shot). I must admit, the 'staches made me laugh every time I looked at them.

I had a hard time getting both the boys to look at the camera because there was so much to see between the cool bible scenes in the trunks, rides, games, and all the other cool costumes.

And finally, here is Eli bouncing. I love the little elephant in the lower, left corner. Alas, I put the lens inside the net for a better picture and my batteries went dead. I had some extra -- but it seems they had been used before, too. So the moral is, take two sets of batteries just to be sure!

Holiday Decor

2010-10-29T08:00:00.001-04:00

I have a five-year-old that LOVES to draw. In fact, we got him some step-by-step drawing books by Ed Emberly a couple years ago, and he has been hooked ever since. These books are great because all you need is to be able to draw a few simple shapes and you can then produce all manner of pictures. Eli has one book for drawing animals, and one called "Make A World", though there are several others.

Not too long ago, I came across window crayons by Crayola, and I got them thinking that it would be a fun project for the boys. Now that Halloween is upon us, and Eli is drawing every chance he gets, I turned him loose on the window, and these were his creations. Some are from the Ed Emberly books, and some he came up with himself -- like the yellow eyeball.

Surprisingly, the crayons are not all that messy, and they wipe off easily with a little bit of water. There were only five colors, however, and I had to help Eli mix the yellow and red to make the pumpkin orange. It took quite a bit of mixing.

I plan do do some more window drawing with Noah, and if we get them done before this posts, I will put in his drawings as well. I will have him spell out what he wants to draw, then I will put the crayon in his hand and help him draw it. He loves doing this, and is very proud of the things he draws with Mama's or Grandmama's help (though I have to admit, Grandmama's help produces much better pictures).

So, it is not a great photo, but Noah and I did the cat in the lower left corner. He was very happy with it!

Sometimes Cheaters Do Prosper

2010-10-22T09:50:00.007-04:00

I am all for being up front and honest in life, and strive to do so in most areas. My biggest exception? Sneaking vegetables into my husband and five-year-old's favorite meals. Bar none, the easiest meal to sneak them into is spaghetti.

Now I have already managed to find great, non-grainy, 100 percent whole wheat pastas that are cheap -- thanks to our local Whole Foods Market. And they are not picky about what kind of ground meat I put in. I have used beef, buffalo, pork, and turkey, and I mostly use turkey as is is much lower in saturated fat (though the thought of using ground meat in marinara makes my close Italian friend cringe -- so don't tell her if you see her). Of course you can use plain pasta if your little (and older) eaters are super-picky.

The difficulty comes with trying to get in some good, dark greens and brightly colored vegetables into a meal that my five-year old will eat. I've tried the Ragu pasta sauce that has the extra vegetables (which is good, by the way), but the moment he sees the chunks of veggies, the vault is closed. I finally came up with an alternate plan.

I made homemade sauce last night, but this would work with store bought sauce as well. I put my can of crushed tomatoes, a couple garlic cloves, and some left over sliced onion into my all metal drive blender. I added a couple large handfuls of raw spinach (you may want to use less to start) and an enormous carrot, and blended it until it was completely smooth.

Then I poured it into a pot and simmered it with lots of basil, salt, and pepper. I added the browned meat, and then poured in the cooked pasta (I like to use penne because it isn't quite so messy for Eli).

Drew and Eli ate double helpings, raved about how good it was, and were none the wiser for getting all the extra nutrients... unless you count the increased brain power that comes with a healthy diet!

Ginger and Nausea

2010-10-22T08:00:00.003-04:00

We have spent the last couple of months on the illness roller coaster, and we are ready to get off!!! One cold after another, followed by one sinus infection after another has this mama screaming, "Uncle!" The last proverbial straw has come in the form of a 24 hour stomach bug, which is one of the toughest illnesses on Noah's physiology.

Prescription nausea medications, so effective for adults, tend to be dangerous for children, especially for kids like Noah. I can say he recovers much more quickly that he used to, but once the vomiting starts, it's just a matter of miserably waiting it out while he looses increasing amounts of fluids.

Today, on the other hand, we had some success at holding off the flow with Alvita's Ginger Root Tea. I made it for Noah twice (it had a wonderful aroma) and kept him sipping on it throughout the day. I added the extra in Noah's food to get a maximum dose, and he has been able to eat several meals and keep his food down.

Ginger has been used as a nausea remedy since ancient times, and if this is not enough for you, numerous modern day studies effectively show its benefit for nausea caused by illness, morning sickness, and even motion sickness.

If that's not enough for you, watch Mythbusters. They do an entire episode on comparisons of motion sickness remedies (including prescribed medicines), and the only one that was effective was ginger pills. ;-)

Alvita's Ginger Root Tea has listed as ingredients ginger root, nothing more, and while Noah can't have any sweeteners, you could use stevia, honey, agave nectar or sweeter of your choice.

Pediatric Neurology

2010-10-21T09:48:00.002-04:00

In the past seven and a half, almost eight years, from our sudden dive into the hectic world of brain injury to the present, I have been thrown in the path of many doctors (and I'm sure several of those doctors greatly regret it -- "uh-oh. Here she comes."). We have seen pediatric specialists of all sorts -- surgeons, hematologists, gastroenterologists, orthopedists, neurologists, etc., and even a wonderfully talented neurosurgeon.

I have a great respect for the profession as a whole, but I have found that certain types of doctors seem to have similar personality traits. From the cheery aspect of the pediatricians we have seen to the architectural precision of the orthopedic surgeon, it is sometimes surprising how well they fall in line. The biggest exception is probably Noah's neurosurgeon (though I know no others with which I can compare) being somewhat a mix of the two I have mentioned.

The one that stands out as being the -- ahem -- cheeriest of those we have seen has to be the pediatric neurologist. I have yet to listen to one that didn't spout an excessiveness of Murphy's Law. "You have CP? Well, this is the very long list of terrible things you will experience, and they will all get worse until you die."

Honestly, it was one of the things that made the first year and a half more difficult. Now that we have found the Institutes -- a place that focuses on using the things you can do to help you get better at the things you cannot -- it doesn't bother me so much. Indeed it can sometimes give me a good laugh.

Which brings us to Noah's yearly check-up with his Pediatric Neurologist. Now let me say, that I really do like this man, because he really does seem to care. He loves children and is gifted in working with them. That caveat aside, at our appointment he prepared himself to go once again down his long list of the ways in which Noah must have gotten worse, and called in his new intern presumably because he likes saying all this aloud.

The "problem" was, he could not find a way in which Noah had actually gotten worse, though he certainly gave it a capital effort. He asked about seizures (Noah has had none in the last year), and he asked about the muscle relaxers Noah was taking when he was in all that pain last year (he is now off and pain-free). He checked Noah's rigidity (and noted how it seemed much less than before), and he noted to the intern how children with poor posture have crooked spines ("But Noah's is very straight," he said.)

He finally finished with, "But that is because Mom is working very hard with him." Of course he couldn't refrain from adding, "But will we eventually see some curvature."

"We'll see." I thought with amusement.

Overall, I thought it was a very good visit.

Toothless

2010-10-15T12:54:00.003-04:00

All I want for Christmas is my FOUR front teeth! In the middle of lunch today, Noah lost yet another tooth, which makes five teeth in the last four weeks, and he is, as ever, adorable sans teeth. Had the tooth fairy known that he was going to lose so many teeth so close together, she might have come down on the payments a little. Noah will soon have her bankrupt!!

You may have noticed I haven't posted in a while -- we've been having some computer trouble -- but this was so cute, I had to try it again on our mini (maybe fifth time's the charm). So, here goes... If it works, I'll try again soon.

New Cleaning Product

2010-09-01T22:00:00.006-04:00

With Noah's allergies and sensitivities, I am always on the lookout for a good cleaning product that isn't going to cause a problem for him. It is especially hard to find a safe disinfecting product.

In comes Seventh Generation with a new product that uses thyme oil as its disinfectant. I love it! The smell is a bit strong at first, though it is a cookery kind of smell as opposed to the typical chemically smell that I detest. And once you've used it, you can can really see the clean (if you don't get it, you probably don't do the cleaning -- or shouldn't).

The best part is I found this for 2.99 and had a dollar off coupon. If you've ever looked into natural cleaners, you probably turned around and walked away to save yourself filing bankruptcy. Getting this one for 1.99 was a real steal. I get to have my kitchen and clean it, too!

The Tooth Fairy

2010-08-18T18:04:00.003-04:00

Look at this precious boy! Doesn't he look proud? This is his third tooth loss to date, but the first one we have recovered. Yes, the first two were lunch time calcium supplements, though I'm not really sure about the absorbtion rate of minerals in whole teeth. We are, however, excited that the tooth fairy will have physical evidence of the loss for which to render payment.

We were actually at Noah's regular dental cleaning, when about ten seconds after the dental hygenist commented on the looseness of the tooth, she bumped it and it popped right off. Immediately it was clear that this tooth would go the way of his other teeth without immediate action. I flipped him quickly onto his stomach and started making him laugh while the two (yes, two) hygenists dug it out of his mouth. All three of us gave a whoop or two when we finally retrieved this tiny treasure, while Noah looked at us like we were insane.

Ah, the little things...

Oxygen Enrichment: The masking program

2010-08-04T22:08:00.001-04:00

Never, EVER put a plastic bag over your face! Your mom said it to you, my mom said it to me, and I stress it frequently to Eli. Yet, I do it to Noah forty times a day.

In my defense, it is not a typical plastic bag, and it does have an air hole. We put it on for one minute and have a break of four minutes in-between. In my greater defense, it has increase Noah's chest size, improved his overall physiology, and increases -- yes, increases -- the amount of oxygen to Noah's brain.

You see, your body regulates carbon dioxide to tell if it is getting enough oxygen. When carbon dioxide (not to be confused with carbon monoxide -- the stuff from car exhaust) increases, your brain tells your body to breath faster and deeper (which I'll talk more about another time). Your brain also sends signals to dilate your blood vessels -- make them bigger. In a brain like Noah's that is missing areas, it is also missing blood vessels -- especially the tiny capillaries -- that used to deliver blood (and therefore oxygen) to those areas. Enlarging (or dilating) the remaining vessels helps the brain to get oxygen it needs but otherwise would not receive in the needed amounts.

Remember that Noah is under the care of his pediatrician as well as a team of doctors that carefully monitor his blood work and other body systems to make sure that he is safe and the treatment is effective. And I don't let just anyone do this program with Noah.

So doing this program helps Noah's brain get more oxygen. It sounds good, but what does it really mean? I'll talk more about this next time.

By the way, the woman in the background is our dear friend Ann, oxygen enrichment specialist extraordinaire. We love Ann!

Homeopathic Fever Reducer

2010-08-02T15:33:00.005-04:00

It amazes me that a child can look at you with a 103 plus fever and smile. Noah did just that on Friday morning -- I would have been laying in bed moaning. When the fever crept up to 104, he stopped smiling so much, and I began to worry.

This is a problem I have been having when Noah gets a nasty virus. I took him to the Doctor on Friday whom diagnosed him with a nasty throat virus (when the strep test was negative), and told me to give him Tylenol and Motrin for the fever, which would last three or four days. Well, Noah can take Tylenol, but it did nothing to bring down the fever. Motrin, on the other hand, causes him to vomit immediately.

I decided to see if I could find a homeopathic remedy. Now, I don't have the space or expertise to describe homeopathic remedies, but I have used them in the past with some success. I got out my homeopathic remedy book and headed to Whole Foods, but I worried about whether or not Noah could tolerate the added ingredients (alcohol for a simple example).

I was very pleased to find that they carried a few King bio Homeopathic Remedies, which have no crazy ingredients. Namely they had one called "Children's Fever Reliever". It is also fairly easy to find online for reasonable prices.

The first evening his fever only went down a degree or so, but enough to stop the Tylenol. We continued it through the night and the next day his fever stayed in the 100's. After 36 hours from onset, the fever was gone and didn't return. So this will be a definite go to for Noah during fever!

Why Now?

2010-07-30T16:20:00.012-04:00

A lot of people have asked me upon finding out about Noah's improvement, "What has changed? Why has he started crawling and improving so much physically after all this time?" Though the answers aren't necessarily easy, I can sum it up in one word: physiology.

Why do I mean by physiology? Well, my handy, dandy Encarta Dictionary describes it as-- body's internal processes: the way a particular body or organism works. The oversimplification makes me laugh, but as for the way a particular body works when that particular body (and brain) has been diagnosed with cerebral palsy is: not very well.

Physiology includes, but is not limited to your breathing, digestion -- including your ability to absorb nutrients, muscle tone, circulatory systems, immune system function, hormone function, and anything else your body does. Considering every system is run by the brain, every system can and often is affected in the child with CP.

Noah is no exception. He has many digestive issues that we are working hard to overcome. Mal absorption, acid reflux, and bowel problems are just another normal for children like Noah. Spasticity is another huge issue for kids like Noah.

Until six months ago, Noah's hamstrings and adductors felt more like bone than muscle. It caused him a lot of pain, kept his left hip from forming correctly, and made it difficult for him to move.

One natural way to combat spasticity is magnesium. It is a wonderful little mineral that as many as 85 percent of people are low in. I could go into all the health benefits of magnesium, but it would take way too long (just don't run out and buy magnesium stearate. If you are going to supplement, talk to your doctor and take magnesium citrate).

Noah takes a lot of magnesium orally, but in the blood work we take to Philly, the amount in his red blood cells (RBC magnesium -- what has been absorbed into the cells) was still pretty low. One of our doctors at IAHP recommended a transdermal magnesium. You rub it onto the skin, and it absorbs into the bloodstream, bypassing that pesky digestive system that absorbs so poorly.

This is the kind that Noah uses, which we have to get from the doctor. Since he has started taking Magnesium this way, his rigidity (or tone) has decreased drastically so that those hamstrings and adductors we talked about now feel like muscle instead of bone, and have a much more normal range of motion. And yes, this is a big reason that Noah is crawling so much better.