Archives for October 2008

I’m jet lagged and can’t sleep even though I should go to bed as it’s midnight here. So I’m watching HOUSE to kill time until I get tired. Something he said about a protein made me have an epiphany. Nathan has a mutation in the Zic2 gene. House said that sometimes if genes malfunction it can cause all sorts of problems. I had another source of inspiration and decidedo look in the Human Genome project database and here’s what I found:

Function and Processes of Zic2

So Nathan’s body probably isn’t doing a good job of any of the above. Which brings me to more treatment possibilities! (Of course, with faith as the underlying force).

Just wanted to share this interesting finding.

When I got Nathan’s diagnosis at 36 weeks gestation, all I could do was pray. I prayed and I prayed and I prayed some more…prayer was the only thing that kept me going, the only thing that kept me from being a puddle in a corner. It was the only way I knew to help my unborn baby who had only a 3% chance of survival. I prayed to God, I prayed to Buddha, I asked everyone I knew from all religions to pray. And then the miracle. Not only did Nathan survive his birth, but he was born incredibly healthy for having such a severe brain malformation. He was able to breathe, regulate his temperature, eat, swallow. Everything about those early days was miraculous.

Then somewhere along the way I lost my faith. I allowed fear to take over and I spent many lonely days and nights afraid for Nathan’s future. I feared an early death. I feared that he would be unhappy with his limitations. I feared that he would be in immense pain because of the complications that arise from lack of mobility. And in a heart filled with fear there is no room for faith. I prayed a little bit, but every day that I didn’t see Nathan improve, I lost more and more faith, more and more hope. Until none was left.

Having lost faith all I had left was worldly interventions. So the journey started. I spent hours and hours researching miraculous healing techniques for children like Nathan. We would fly anywhere where there was an assessment that might help, a doctor who might give us an idea of how to fix Nathan. We tried various therapeutic interventions. We ordered all sorts of equipment thinking that maybe equipment would fix him. And 2 years later here we are, not much further ahead than when we started on this road.

So I descended deeper and deeper into a very dark place. And let me tell you that the place where there is no hope or faith is terrible indeed.

Then on labor day this year I hit rock bottom and realized that I literally, physically could not continue on that road. It was only going to lead somewhere very bad. Some laugh when I say I had a nervous breakdown because I wasn’t your typical breakdown patient. But emotionally I broke down and realized I couldn’t continue living the way I was.

Thus began my search for faith. It was faith that transformed what could’ve been the most difficult painful days of my life into a magical journey. I remember feeling strong, peaceful, hopeful during those 4 weeks after the diagnosis, before Nathan’s birth. I decided, it’s time to go back there.

So for the last few weeks I have been on a search for faith. I have been praying to God, to Buddha, to any higher power I know and asking him for help. At first I was afraid to ask for Nathan to be healed. I figured it was ungrateful to ask for Nathan to have better “worldly” skills, that it was un-spiritual. He is the way he is for a reason, God must’ve wanted him this way, what’s the point of him gaining more worldly skills when walking, talking, manipulating objects with our hands has no inherent meaning. But at a Christian retreat that a dear friend took us to, the preacher said something that has really stayed with me. Of course God wants Nathan to be healed. Of course God wants the best for all of us. If someone is sick, God doesn’t want them to remain sick. He wants them to have faith and try to get better. But if there is no chance at all whatsoever for healing, then they should have peace and acceptance of their journey. And it was this teaching that made me realize, of course it’s okay to want Nathan to be better. It’s just the way a mom views the situation for their child. For some time now I have gained and felt acceptance of Nathan’s disability. Of course I love and accept him exactly as he is, but as his mom, I also WANT him to gain more skills, I want him to gain as much function and independence as possible. Which is why we continue trying therapies and doing things to help him. It’s easier now with a mind of acceptance – there are no expectations, and without expectations, there is little suffering if things don’t turn out the way we want them. It’s the same with God. Of course God wants Nathan to be better. And the preacher also said that God has the POWER to make him better. To God Nathan’s disability is like a headache to us. We shouldn’t think that because Nathan is so profoundly disabled, that it’s too much for God to heal. God makes miracles regardless of the severity of the condition.

And I remember the days in which I prayed and prayed, before Nathan was born. Even though he only had a 3% chance of survival, I didn’t believe it. I had FAITH that Nathan would survive his birth. I believed it with every ounce of my being. So I already know that miracles are possible. I already know that with faith and prayer, the most profound disabilities are insignificant and can be healed.

Which brings me to today. We are in search of faith at Disneyland Paris. No, we don’t think that God has manifested through Mickey Mouse here at Disney. We are here to see Venerable Geshe Kelsang Gyatso, a wonderful Buddhist teacher who is known as a healer. I have always loved Venerable Geshe-la’s teachings, he speaks of love, patience, faith. He has been a great guide for me. And he is teaching at the convention center at Disneyland France.

Tonight, during the first teaching, I had to really think, Why am I here? What do I expect to gain from being here, at this teaching? And as I was thinking this, Venerable Geshe-la said, “Without faith, we have nothing.” And I realize I am here more than anything else to find faith. I hope that bringing Nathan all the way to France and having him listen to the teachings will leave a seed somewhere in his heart for love and peace.

I know if I can find faith again, miracles will happen. As I know that it is time to stop thinking that conventional therapies and treatments will be the cause of Nathan’s improvements. 2 years of experience have shown me how far you go with faith in conventional treatments – not far at all. So even though of course we will continue what we’re doing, I am changing my emphasis. I will use those treatments as a way of allowing my faith to heal Nathan. Not what I was doing before, by thinking that it was the treatments without faith that could perform the miracle.

It’s time to try a fresh approach. To let faith perform miracles.

So stay tuned. I will share what I heard during the teachings. And of course I will post gorgeous photos of Nathan at Disney France and in Paris!

Today, I forgot my camera so I was only able to take one photo when we got back to our hotel, but it’s a good one, isn’t it 😉

We had a little Halloween party with Nathan’s buddies! Check out the pics.

Sometimes you have to wonder what is the meaning of having children like Nathan in this world. Stories like this one that a good friend sent me by email make it all make sense:

At a fundraising dinner for a school that serves children with learning disabilities, the father of one of the students delivered a speech that would never be forgotten by all who attended. After extolling the school and its
dedicated staff, he offered a question:
‘When not interfered with by outside influences, everything nature does, is done with perfection.
Yet my son, Shay, cannot learn things as other children do. He cannot understand things as other children do.
Where is the natural order of things in my son?’
The audience was stilled by the query.
The father continued. ‘I believe that when a child like Shay, who was mentally and physically disabled comes into the world, an opportunity to realize true human nature presents itself, and it comes in the way other people treat that child.’
Then he told the following story:

Shay and I had walked past a park where some boys Shay knew were playing baseball. Shay asked, ‘Do you think they’ll let me play?’ I knew that most of the boys would not want someone like Shay on their team, but as a father I also understood that if my son were allowed to play, it would give him a much-needed sense of belonging and some confidence to be accepted by others in spite of his handicaps.
I approached one of the boys on the field and asked (not expecting much) if Shay could play. The boy looked around for guidance and said, ‘We’re losing by six runs and the game is in the eighth inning. I guess he can be on our team and we’ll try to put him in to bat in the ninth inning.’
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Shay struggled over to the team’s bench and, with a broad smile, put on a team shirt. I watched with a small tear in my eye and warmth in my heart. The boys saw my joy at my son being accepted.
In the bottom of the eighth inning, Shay’s team scored a few runs but was still behind by three.
In the top of the ninth inning, Shay put on a glove and played in the right field. Even though no hits came his way, he was obviously ecstatic just to be in the game and on the field, grinning from ear to ear as I waved to him from the stands.
In the bottom of the ninth inning, Shay’s team scored=2 0 again.
Now, with two outs and the bases loaded, the potential winning run was on base and Shay was scheduled to be next at bat.
At this juncture, do they let Shay bat and give away their chance to win the game?
Surprisingly, Shay was given the bat. Everyone knew that a hit was all but impossible because Shay didn’t even know how to hold the bat properly, much less connect with the ball.
However, as Shay stepped up to the plate, the pitcher, recognizing that the other team was putting winning aside for this moment in Shay’s life, moved in a few steps to lob the ball in softly so Shay could at least make contact.
The first pitch came and Shay swung clumsily and missed.
The pitcher again took a few steps forward to toss the ball softly towards Shay.
As the pitch came in, Shay swung at the ball and hit a slow ground ball right back to the pitcher.
The game would now be over.
The pitcher picked up the soft grounder and could have easily thrown the ball to the first baseman.< /div>
Shay would have been out and that would have been the end of the game.
Instead, the pitcher threw the ball right over the first baseman’s head, out of reach of all team mates.
Everyone from the stands and both teams started yelling, ‘Shay, run to first!
Run to first!’
Never in his life had Shay ever run that far, but he made it to first base.
He scampered down the baseline, wide-eyed and startled.
Everyone yelled, ‘Run to second, run to second!’
Catching his breath, Shay awkwardly ran towards second, gleaming and struggling to make it to the base.
By the time Shay rounded towards second base, the right fielder had the ball. The smallest guy on their team who now had his first chance to be the hero for his team.
He could have thrown the ball to the second-baseman for the tag, but he understood the pitcher’s intentions so he, too, intentionally threw the =2 0ball high and far over the third-baseman’s head.
Shay ran toward third base deliriously as the runners ahead of him circled the bases toward home.
All were screaming, ‘Shay, Shay, Shay, all the Way Shay’
Shay reached third base because the opposing shortstop ran to help him by turning him in the direction of third base, and shouted, ‘Run to third!
Shay, run to third!’
As Shay rounded third, the boys from both teams, and the spectators, were 20 on their feet screaming, ‘Shay, run home! Run home!’
Shay ran to home, stepped on the plate, and was cheered as the hero who hit the grand slam and won the game for his team
‘That day’, said the father softly with tears now rolling down his face, ‘the boys from both teams helped bring a piece of true love and humanity into this world’.
Shay didn’t make it to another summer. He died that winter, having never forgotten being the hero and making me so happy, and coming home and seeing his Mother tearfully embrace her little hero of the day!

We’re in the car driving back to Vermont to catch our flight home. Nathan is in the back squealing with delight as he watches Lilo & Stitch. I’m afraid we’ve created a monster – to get him through the week of confinement and training he had a DVD screen stuck to his face at all times. Now he demands it and if we don’t deliver it instantly, we’re in trouble. Whatever works, right 🙂

Even though it was a very hard week, Owen and I are very happy. We feel that we made the right choice by going to the ABR training and we are excited about what we think this can do for Nathan.

I think after a full five days I finally understand and can explain it a little bit better.

Basically, the whole premise of ABR is to apply kinetic energy to the body to stimulate strengthening of smooth muscles. Loosely defined, smooth muscles are the connective tissue and other structures around muscles. Mr. Bylum calls them the cheapest structures of the body, the ones that require the least energy to run, strengthen and maintain. By strengthening these smooth muscles, we free up regular muscles to perform dynamic movements and other tasks, which require more energy and motor planning and are a lot more “expensive” to run.

Brain injured children have such weak structures and smooth muscles that they tax muscles too much and the muscles cannot perform their tasks properly.

By using “constructions” such as towels and other props and aids, specific exercises are used to apply energy to the smooth muscles. Props are used to bypass the protective structures of the body and get deep into the internal and connective tissues and organs.

To really understand it you have to experience it. If I had read all this and not had the exercises applied on me, I would’ve thought it was all baloney. But as part of the training, the instructor practiced on the parents and the parents had to practice on each other. When it was done on me, I could feel the energy going through my body and I definitely felt it was doing something.

The ABR team talks with a lot of certainty about their program. They say things like, if you put in 200 hours, you WILL see the chest becoming stronger and improving its structure. Of course my question to them was, once his chest is stronger, does that mean he’ll be able to sit up by himself? Unfortunately, their answer is that they don’t know. Their focus is to improve structure. Whatever function is gained as a byproduct of the improved structure is a bonus. Now this was a bit of a tough pill to swallow, as I wanted to hear that spending 3 hours a day on these exercises would show some marked improvements in Nathan’s function. But viewing the situation from a different point of view, we realized that if all this does is improve Nathan’s structure and help to prevent things like surgeries and other painful interventions in the future, we are happy.

Something else that really transformed the experience for me was that I got to meet some families that have been involved in the program for a long time. We didn’t get much time to talk as we were going in and out of training sessions and evaluations. But I did notice that most of the returning children seemed to be doing really well. They seemed to have great structure to their bodies and were doing wonderful things like holding up their heads and sitting up. That, more than anything else, convinced me that we are on the right path.

Now I am convinced that this is an important component to Nathan’s therapy program, but I still do not think this should be the only component. This really just addresses one part of Nathan’s needs and challenges. We still have many more to address.

So our plan once we get settled back home is to put into effect our full-fledged plan with all the different components we have discovered. So a day in Nathan’s life will look something like this:

7am – wakes up. 30 min’s of ABR exercise (jaw)
7:30 – breakfast.
8:30 – traditional physical/occupational therapy
9:30 – 1 hour of hyperbaric oxygen therapy
10:30 – nap with ABR machine when available (back)
12:30 – lunch
1:30 – 1 hour of ABR (chest)
2:30 – PT/ST/DT – traditional therapy
3:30 – 1 hour of ABR (neck/jaw)
4:30 – Reach program session
5:00 – Go out to the park/walk/hang out (bring gait trainer so he can practice walking)
8:00 – wind down and 30 min’s of ABR exercise (solar plexus for reflux)
8:30 – Sleep with ABR machine when available (back)

In the meantime, we will give him G therapy as his homeopathic supplement. ALso, having just finished testing him for food allergies, candida, yeast, heavy metals, etc we will know what supplements we need to give him, foods to avoid, etc. We’re still waiting for the results of all these tests and will set up a diet and supplement protocol as soon as all the results are in.

We think ABR will be a key component in keeping Nathan healthy and in helping him develop some motor skills. But everything else will also support his cognitive and social development.

In general, it was a long week of a lot of hard work. The ABR training demands a lot of energy and concentration. And the trainers expect nothing but 100% from the families, which I think is wonderful. They give the families all of the tools to empower them in the therapy program. We were really impressed with the ABR team and how committed they are to helping kids.

I have to admit that my favorite part of the trip was meeting and hanging out with other families. We got to spend a little bit of time wtih a few very special kids and their families. I fell in love with some of Nathan’s little buddies and hope we can spend time with them in the future.

And now we are arriving at the airport and I ahve to shut down and get on a plane! Thanks for keeping an eye on Nathan and for checking in on us!

And here are some yummy pictures:





Sorry, no pretty pictures today. It has been a long hard day. We had our evaluation with Leonid Bylu, the founder of ABR. I’m going to post the transcript of the meeting.

As you read, most of it won’t make much sense. Later on, when I get the video of it, I will post some clips so you can correlate his evaluation with what he was doing in Nathan’s body. And it will make mroe sense that way.

But the main thing that we were told today is that our approach towards Nathan’s development shouldn’t really be about function, it should be about reduction of negatives. At the moment Nathan is one big NEGATIVE. Everything in his structure is wrong. Not only does he have NO control of his body but this lack of control has led to all sorts of structural problems. So the ABR approach is to reduce negatives. For example, my first goal for Nathan is head control. He said before we gain head control we have 8 stages to go to prevent his head from falling backwards. Then there are at least another 8 stages for him to pick up his head etc. So we are looking at 16 stages JUST to get decent head control. Excluding everything else everywhere else in his body.

As you can tell I have had a pretty hard time today. It’s almost like he exposed Nathan in all of his weakness and instability. And yes, this is the same child, I know Nathan is weak and I am the first to know how profoundly weak he is. But it literally felt like I had been looking at him through rosy-colored eyes and today all glasses and all softness was taken away showing us just how long the road ahead of us is going to be.

The good thing is that with a lot of old fashioned hard work we can do something about it. We will be able to reduce some of the negatives and help to improve Nathan’s quality of life. But whether, or how fast, Nathan will make functional progress…seems harder now, and much further away than ever before. I guess ignorance is bliss. By ignoring all the stages required to even hold up his head I had hoped that maybe one day he would just do it. Now I know we have at least 16 stages to go before we can even see that. And we need that before he can sit up, etc.

I think I’m too depressed to continue. Here are the notes from the evaluation:

If we get into the point of what , why and how .. these are 3 separate domains… what are the things we’re doing here.. we’re looking at the what… tangible, observable things.. musculoskeletal system in familiar way, what we can see.. the theory as of why, that’s another story. There is the technique, the how.
It’s actually quite simple. First we give you simple thought, everything you heard so far is about the brain and signal and external muscles..spastic, rigid, etc… we’ve been trying to address those problems in one way or another..when we talk about smooth muscles it brings the first bridge, to give you expansion on those original thoughts..not only the external but internal matters as well.
What you’ve seen is obvious..collapse of chest and abdomen. When we talk about maintaining posture, it’s simple, when the internal compartments are too weak, no amount of muscular force from outside can do anything about them. Simple..this is abdomen, very poor compressible abdomen, compared to other children, very different picture. We need to strengthen. B asically every organ has certain wrappings, if u look at cross section everything is divided into sub compartments and divided and bordered and wrapped into connective tissue. Smooth muscles are oversimplification. Of course they are embedded together with other connective tissue. It is generalized under terminology of internal myofascia representing different layers. Wrappings of sub compartments specific of fascia and connective tissue.
Fascia is cheapest tissue existent in human body. Muscles are expensive, connective tissue is cheap, doesn’t cost much to run in terms of metabolism etc. just layers of fabric. So what we’re doing technically is quite simple. You have external elastic muscular layers. You have to find the way to get the response from those internal layers. Once we bypass the resistance of those, we deliver mechanical stimulus to various sub compartments of layers of fascia. As they are being mechanically stimulated there is an electric effect, and that effect, as time goes, causes growth. Under pressure, there are changes in polarity, which changes chemical pathways. When we have compression we can’t control, so this is general. My part is simple. There are external structures, longitudinal, voluntary, etc.. we want to get response from more primitive, deeper, circumferential, layers of fabric wrapping sub compartments within. What we need is to distinguish between 2 types of responses – 1. Elastic rebound from surface. 2. True response. When you see technique from outside it looks strange, but once you are on receiving side, you feel the impact, which is independent on you voluntary perception. Structures of body are multi potential, have diff response depending on types of impact. Difference between wood, predetermined responses, responds or not. Tissues of body respond diff to diff impact. Depending on how we address it we make different responses.
We’re just looking for buoyancy factor to get it floating and then get impact. Idea is simple. Addressing most primitive cheapest structure in the body, which are designed to carry static loads, and the idea is we address those structures so we can free up the more expensive structures which are designed for dynamic performance. Muscles are designed for dynamic performance. In case of CP children, muscles are not bad guys who got into wrong performance. They are good guys but doing a lousy job. Good guys designed to do dynamic job but are forced into position to do hard physical labor which they’re not designed to. And basically that’s what happens. Once they get into static mode they deteriorate. As they deteriorate they can’t perform dynamic properties. Then everyone else tries to fight poor muscles mechanically or poison injections or cutting with knifes or doing nasty things to them.
Our philosophy is the opposite. We talk about the idea that we want to address the structures which are designed primarily for those static loads, deeper connective tissues, and free up muscles for specific jobs. To bring up inexpensive posture and maintenance so that muscles can be free to perform free flowing activities. Structures we’re addressing are not only least expensive, they’re also the silent ones. They don’t shout loud. They don’t have significant electric phenomena, muscles have high electric conductivity. Neurologists who use electricity focus on muscles alone, not much of interest in connective tissue which has low conductivity. The idea is simple, you want to deliver the mechanical stimulus inside. Which is tricky because if you don’t do special tricks it’s all protected from the outside. Only in early months when child is still like jelly there is potential to do this, when they re in jelly fish stage, which actually allows cascade or sequence of effects which causes stimulus to internal structures, during first months of life child doesn’t’ do much dynamic, just breathes and eats. As internal capacity builds up, gradually dynamic component starts getting in. First through static then connections, first weight bearing, then dynamic performance. Static, transitional, weight bearing, dynamic performance.
If addressing internal structures bring something predictable in terms of structures, that’s the only thing that matters. Pictures etc will give comparisons for the future. First thing to show that you’d connect with is that this technique, however strange, it works. It’s multilevel. ABR technique is certain impact designed to deliver micro strengthening, daily micro improvement to those compartments. That’s all we do. We don’t pull or stretch. Transformations happen indirectly. I won’t say that he’ll become normal. You’re looking for things he’s able to do things himself. We can’t impose pluses on top of deep negatives. Reliable interpretation of improvements that you have to look for is strategy of reduction of negatives.
Look at him, what do u see. You want to see symmetric abilities to look up, turn to both sides, etc. what do you have here. Asymmetry in position of head, easier to the right, if he looks left, the right shoulder jumps up a lot higher than the other side. The neutral position is shifted more towards the right. Primary is that what we have this if I try to move head forward, when I try to move his head, the movement of the head translates the movement of the entire body. For instance if I let his head go, it goes down, with acceleration. This is very important. It doesn’t just fall down, it goes down with acceleration. It’s not just weak, there are short muscles that are overstretched by movement of head forward, so when you let go, they snap back. That means he is showing that accelerated movement is there. Next step from accelerated fall is free fall. That is still negative. Still he can’t do anything, but this is transition. That will be the result of the weakness, without the excessive extra muscular shortness. After that looking for development of initial deceleration, he’s still not controlling, but at least makes attempt to slow it down. This is big transition from free fall. From there you go into improvement of deceleration, where he gets controllable decent. Falls w/o head knocking on the ground. After appearance of certain point, where he lets head go, he can control certain individual points. After that, when reverse part has been improved, then from individual dots of holding, you can expect the head to go up on his own. There is just 8 steps to prevent falling down.
In reality if you look truly, that’s not yet the true beginning. The true beginning is lower, he has fish like movement of mouth, as he opens the mouth, the head tilts backward. This is absence of face control, you can’t expect head control if you don’t have face control. If you take front half of face, you need sufficient division of the face, so movement of face doesn’t challenge control of head. Newborn is able to suck, mimic expression, w/o challenge to position of the head. In this case, this twist of the head, rotation, it’s not true rotation it’s an extension of a tilt backwards. If we have this movement backwards but you can only go back as far as that. If he only has range to go backwards, the head derails, his tilt of the head sideways is not true rotational movement, it is tilt backwards plus derail. Practically, means, he can’t handle central position, his point of contact is not occipital, it’s top of the head, we first want to see reduction of twist, and the ability to get point of contact of the head from the crown down to mid occipital level. That will be true count to start going down phases of negative.
All of those are true. Not in textbook. These are opportunities, these are clear cut, tangible, mechanical things. I don’t ask how bad is brain injury. For cheap structures, response is automatic, that’s beauty of primitive connective level. They run on such little brain power, that they just need enough brain power to eat and digest, they have enough to respond. I can give you those landmarks and milestones with a lot of precision, these are steps that you cannot bypass. You have to understand that for everything, there are B, c, d, e, f etc.. and most of them still belong to negatives. So we start by reducing negatives.
ABR works by delivering elementary changes. You need to understand chest is weak. I can assure you that 200 hours into chest, it will become stronger and hold better. Same with abdomen. 200 hours on abdomen, sooner you’ll see the response, difference in abdominal tone. 200 hours onto shoulders, he’ll get broader, stability will improve, etc. those are elementary. Yes it is possible to address structural levels. But if you ask me for timeline from accelerated to freefall – I can’t give, too many components, have to see dynamics, etc. I can give you roadmap, landmarks, but if there’s a highway or country road or a jungle, impossible to know. The younger the child, the better they respond. If child has better intellectual capacity, that’s a good sign for other things. If the child eats and feeds and bowel movement these are good signs. But 200 hours per area will show you significant tangible visible changes. But how, and what , and when, hard to know. How large the change is, I don’t know.
Structural Observations of Nathan’s body:
Derailing is in midneck region, much worse when the derailing happens at the cervical cranial transition. That’s one of the things we see with Doman individuals. They get patterning and derailments are mind boggling.
(Nathan on his tummy weight bearing on shoulder girdles) – as he’s supported by the chest he should hold his weight. As response you see penguin position. Once you get into landing pose, elbow is straight, and he’s not weight bearing on his arms, and what happens as he tries to hold his weight, the shoulder blade slides upwards, doesn’t’ really hold. If we try to have him prop himself up on his belly with his arms, the arm rolls under. We want to see transition from penguin into beginnings of an eagle. The first thing is he’ll get into elbow contact position. When elbow is in contact we want to see elementary cone of support. One position of contact for the elbow. But for that you have to be able to come out go in go forwards backwards. So generally it’s inverted ice cream cone.
Secret of transition from static to dynamic is the inverted cones. You put down the elbow, and then the shoulder moves around and needs to be supported, so makes inverted cone. This is foundation of dynamic movement. You’re looking for transition for those elements of structures and that functional transitional thing. Anything you have in terms of grasping, reaching, those are bonus. Pure unpredictable bonuses. What we want to see is reliable things such as reduction of negatives and gradual improvement of weight bearing components. It’s not crawling that’s the goal, the goal is to build the divisions between the neck and the shoulder girdle. As that goal is being fulfilled it can be traced by the development of weight bearing.
These are opportunities. If you look at shoulder blade, you want to see it go down. You want to see it getting stable, not sliding around. Reaction force – if weight contacts the ground, reaction force appears, weight directed other way around. Every time you touch the ground, reaction force emerging. To complete story of prone position, what you’re seeing here because of all deficiencies, what happens if I try to move him by one arm, the whole thing moves, we cannot make selective movement of single arm. We understand its happening because he has such conflict between clavicle and neck. Going to reduction of negatives – gives another key understanding. Wrong place wrong movement between clavicle and neck and stiffness of trapeze muscles. This creates situation that if you help him he can get on elbows and hold his head. This is a fake because it’s based on stiffness of muscles which ascend from the shoulder upwards not the proper strength of the neck. If you look the clavicle to the neck and tighten up the trapeze, it keeps the head from dropping down. Once we get release of area you’ll see he’s going to drop, you’ll see an improvement, because underneath rigidity there is weakness. It’s called reduction of weakness. Mobility without strength is a step forward, better than mobility with stiffness.
Legs – posterior muscles are too strong in response to anterior, you can’t strengthen anterior. And that’s what you need. Anything he can do himself won’t help him. We are opposing athletic training. If you build it under the premise of strength building this is wrong premise. But the right premise is to give him variety of movement experiences and as certain development of movement pleasure and movement intelligence. If likes certain things, do them, but bring in variety. Anything when they come in with playing and engage him, that’s fine. But understand that you should not have many expectations from it as it won’t work. With such a profound structure limitation, no matter how much of movement intelligence he has, it’s not going to help him to do much. As you work on structural improvements, you’re welcome to continue fun work or anything that promotes motor intelligence. As longs as you know priorities. It’s all about balance and priorities.
Everything with suspension is bad idea. Suspension gait trainers challenge structure.
Scissoring is reflection of alignment. Scissoring shouldn’t worry. You should be concerned is fact that legs aren’t reacting, no weight bearing at all. If he gets excited he tightens up through spine. Scissoring is reflection of alignment. Alignment comes last. How can you judge position of the leg if you don’t know where the leg ends and the spine starts. For his legs priority is not to fight with scissoring, straightening is miles away from us. We want to see mobility. Today its moving way out there, today it’s not moving with the pelvis, etc etc. be ready to see legs are far from aligned. You can’t expect to improve movements before you’ve arrived at the right place.
You can see how collapsible his chest is, you can press it all the way in. When you bring him to the floor he can’t use his hands/arms to protect himself, falls face down. If you bring his shoulders together they can almost touch.
ATNR – not infant reflexes. Those are just because the clavicle goes up, so the arm comes up. Infant reflexes invented by lazy people who didn’t study real people. Lazy electricians dominate neurological world.
Side sitting and supporting himself with his hands is not real weight bearing, he holds himself based on stiffness. Not real.
In sitting, even with maximum support, no balancing at all, even with max support, if you move him, his entire body moves in unison with his legs. If you shift support lower to mid chest, he collapses under his own weight. If you lift his head, it’s stiffness of trapezes muscles, not strength. If I move support lower, folds down even more. Here you can see the extreme of the diaphragm bulge (on his back when he’s leaning forward). The diaphragm has to be a dome sitting underneath the border of the rib cage. If compressionally we have such a bulge, its wrong territory and reflection of profound weakness. Again giving him one arm for support, and he cannot hold himself at all. If you tilt head and let it go, the body collapses.
He commands a lot of respect for the way he carries himself.
If you do too much, you get tired, and stop enjoying, give up. You want consistent rate of progress without sacrificing. Very important to find the pleasures and happiness today not having it to a deferred life plan, nothing more destructive than that. People who fall into that get themselves burnt out. They chase rainbows.

Another fascinating day in ABR land. Today we had the evaluation with Gavin who showed us all about what’s wrong with Nathan’s little body. On the one hand it was awful to hear about everything else that’s wrong with Nathan. We thought it was just his brain, now we’re finding out his structure is all messed up too BECAUSE of the brain. The good thing is they told us everything is “fixable” and if we do the ABR exercises properly we can improve Nathan’s structure significantly. With better structure he’ll have a better chance of movement and mobility. Here are some of the things we were told:

– No definition of the jaw
– No, or very very short, neck
– His shoulder blades go all the way up to his neck
– His chest is collapsed and has almost no volume
– The shoulder blade moves instead of the shoulder joint
– The hips are very tight and narrow and have no volume
– When you press on the chest the abdomen inflates
– Joints are very loose throughout the body
– Knees creak and crack
– Adams apple is very very high, almost all the way up to his jaw
– Neck muscles are incredibly tight
– Distance between C7 and neck, and neck and top of the head, is 2 to 1, instead of 1 to 1
– His body isn’t separated – if you lift up his left leg, the right comes up with it, all the way up to his back
– If you put his neck down to his chest, the entire neck moves as one so his point of contact is near the chest, not the clavicle

These are just off the top of my mind. Gavin filmed the evaluation so I have the whole thing on tape. Later I will try to make the video, or snippets of it, available so others can get a better understanding of what I’m talking about.

I will plagiarize from Erin, who plagiarized from Katy:

He’s got all the signs: His neck is too short, his rib cage has a diamond shape, his pelvis is very thin, and his legs are adductors, hips and hamstrings are tight and bend inwards.. His arms move from the scapula rather than the ball of the shoulder, and his legs are very weak at the pelvis. So, the bad news is that its a lot to work on and Leonid will only get into it further tomorrow. The good news is that since he’s pretty classic, they’ve got a lot of ways to help him.

Now for the most important part (the social one):

We had a fantastic time having dinner with the Sprangers. Daniel is such a sweet-natured child and is super happy all the time. We had a great time just chatting and hanging out and exchanging ideas and information.

Below are some photos and videos of our day.




Today we finish our 3rd day of ABR training. I finally feel I am beginning to grasp the concept and the technique. It’s a very structured, almost mathematic approach, so it’s taken me some time to understand. We practiced on Nathan today. He was mostly okay with the treatment but after a few minutes he complained a little bit. It was probably a very new, different sensation for him. Yet I am happy that he tolerated it and I think his tolerance will increase.

We were pretty tired after the training and went to dinner with another family from Florida. We had a really nice time and enjoyed getting to know them and their son, Jonathan.

It’s been so great talking to and spending time with other families that deal with similar situations. I can’t describe what a relief it is to sit down to dinner and chit chat about things we’ve tried, looked into, doctors experiences, dealing with the emotional issues, etc. We have learned a lot from these other families too, just in 3 short days.

Anyways, I wanted to share a little video of what Nathan did at the end of his ABR session today, and a few pictures of our training.






Yesterday we had our ABR presentation and today our first training.

They have explained to us that for our kids to develop better function their structure has to improve. The way to improve their structure is to apply energy to different areas of their body and this energy will help to restore and improve the structure of their body.

We are still learning about it, but so far, we have been pretty happy with what we’ve learned. It makes perfect sense that we have to improve Nathan’s structure as we know that it will and has decayed because of the brain injury.

So far we’re having a wonderful time. We have met some lovely families and have enjoyed hanging out and exchanging ideas. We met the Gallos and the Smykays and went to the botanical gardens and dinner today. Oh and did you know that Nathan has a fraternal twin?

Let me tell you how identical Nathan and Fletcher are. At one point both boys were outside the room and I heard Nathan make his cute little noises and then I went outside and found out it was Fletcher! They laugh the same, make the same noises, have the same mannerisms and expressions, similar movements…it was amazing. They really enjoyed each other at dinner today, Fletcher would start squeaking and laughing and he would make Nathan laugh who would then start squeakng and laughing. It was so fun to watch them! Below are some pics:





Today we met the lawyer that helped us get Nathan the Kidwalk and the Hart Walker.

Today he has become my new hero.

He has cerebral palsy. He told me that his mom fought for him and helped him and gave him every opportunity in the world.

He graduated from UC Berkeley undergrad and law school. And how he works at a law firm that advocates for children with disabilities.

When I called them asking for help, not only was he happy to help, but he went above and beyond. Even though I thought Nathan could benefit from both walkers, I figured I should choose and fight for just one. He told me that we would ask and fight for both. I was astonished as I would’ve never dared to go that far.

Not only did he dare to go that far but he won the case and got the regional center to fund BOTH the Hart Walker and the Kidwalk!

He gave me so much hope for Nathan’s future and that of other kids with CP.

Anyways…I really should pack and get ready…we have to be at the airport in 8 hours!

We are getting ready to take off to Canada tommorrow to receive training in Advanced Biomechanical Rehabilitation. And all I can say is that I am EXCITED.

I am so happy that we will have this opportunity to practice this treatment on Nathan.

And I am excited to meet other families. We will be meeting Fletcher and Daniel’s family. And many more cool families that we have talked to online.

We will keep posting and letting you know how our trip goes!

I feel like we are on the jetway and getting ready for Nathan to take off. This week felt like we got all of the pieces of the puzzle in place:

* We got the oxygen compressor for the hyperbaric chamber so now we can add about 40% oxygen into the chamber. We set it all up today and today was Nathan’s first full, oxygenated hyperbaric treatment.

* We sent off all of the stool, urine and blood samples to the different test labs so they can examine if Nathan has yeast, candida, fungus, viruses, bacteria, food allergies, heavy metals, etc in his system. Once we get all the results (which will take about a month) we can start Nathan on the biomedical protocol.

* We gave Nathan the first dose of G-therapy today. We didn’t do it quite right but we are learning.

* Nathan’s Kidwalk will be ordered on Monday and it should be here in 2-4 weeks. Yay!!! Nathan can begin learning to walk!

And now we’re getting ready to learn about ABR.

I am excited, hopeful, and happy. I feel that we are on the right path and we have all of the components in place now to really give Nathan every chance available.

And most importantly, we BELIEVE in Nathan’s future and potential, without doubts, questions or hesitations.

So thanks to all of you who keep an eye on Nathan, you’re the best!

Here I am fudzing around the computer when I really should be sleeping.

But let me talk about Holland. More specifically, Welcome to Holland:

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

I’ve always loved and enjoyed this poem. But a couple of days ago I saw it in the back of Jenny McCarthy’s book, Mother Warriors, I read it again and realized, NO WAY.

Because Welcome to Holland feels like such a wild misrepresentation of my journey. What do you think of when you think of Holland? Boring, dull, quiet, lacking life. Maybe that’s just me. But Holland seems like a lifeless place, a place few want to visit.

The truth is, I still feel I went to Italy. Not only do I feel I went to Italy. I feel like I’ve had the most amazing, in-depth, powerful, intense tour of Italy. I feel like I’ve been to the most beautiful parts of Italy, like I’ve gone for a drive in Tuscany, seen the beautiful pristine leaning tower of Pisa. I feel like I’ve been to the dirtiest slum in Rome and smelled the smog and been run over by one of their crazy motorcycle drivers. I feel like I’ve been tricked by a fake gladiator to take a picture and hand him $5 euros and I feel like I’ve been blown wide open by the feeling of piety and peace at a cathedral in Florence.

I’m sorry Emily, but this journey was not to Holland.

We’ve had the in-depth, enhanced, deluxe tour to Italy. We’ve seen the best and the worst. We’ve been lost in the darkness of night and the depths of sorrow, and we’ve been uplifted by the soaring heights of The Last Supper. Most importantly, our journey has been intense and full of life. Rich, fulfilling, constructive.

Honestly, sometimes I feel like everyone else thought they were going to Italy and found themselves in Holland. We thought we were going to Disney and found ourselves in Italy. We got so much more than we asked, so much more than we could even imagine. It’s like going somewhere to buy a candy and you’re given 100 million dollars instead. More than you could even conceive in your limited imagination.

Sure, this journey can be very hard. You hit the bottom of the wave and the water comes crashing down on you and you think there is nothing you can do but drown. But your boat rises and you find yourself at the top of the next wave and man, is it lovely.

Maybe some never remove the veil to find themselves in Italy. They think they’re in prison when the entire time they were in an Italy waiting to be explored, lived, devoured. If you just open your eyes and your heart you realize how lucky you are to be in Italy and why would you want to be in Holland?

The dichotomy arises when you find that what you fight with every breath and ounce of strength in your body is so your child can develop the skills to belong in Holland.

But having been in Italy, the closest you can get is Hollandwood. It’s an enhanced, enriched, entertaining, fulfilling version of Holland. Full of life, color, diversity, intensity, drama. Holland is closed to you.

I’ll take Hollandwood instead.

Nathan started HBOT today!





We are so excited! He tolerated 30 minutes in the chamber today, on his first try.

The universe has been insisting over and over that we need to try this therapy for Nathan so what an we do but listen and try.

Please pray that this works for our little piece of heaven!

I found Jason’s blog today and loved the message and attitude of the Drozdyk family. No limits. They will not limit Jason’s opportunities, they will not limit Jason’s future.

It made me realize that I need to have this fierce, clear determination. Like the Drozdyk’s, we want to give Nathan every possible opportunity. We are willing to get ourselves into any debt and financial crisis in order to give Nathan opportunities. We travel the world trying treatments and externally we are doing the best we can for Nathan. Here’s a page on what we’ve done and are doing for Nathan: Therapeutic Approach

But today I realized that what we are lacking is BELIEF.

I read Jenny McCarthy’s new book today “Mother Warriors” and something she said really clicked:

The most powerful tool of a mother who has a child with autism is the power of believing her child will get better. If your mind is consantly second-guessing and questioning the validity of biomedical treatments when so many moms are saying they help, then that is the path you will stay on. You will stay in the unknown. But if you are determined to heal your child and all of your focus is toward that goal, then your path will be with those who have recovered their children. Nowhere else. There is no second-guessing in this direction. There is not trying the diet halfway in this direction. There are NO excuses in this direction. There’s only focus, determination, faith, and a clear vision of the best possible outcome for the child.

Of course Nathan’s not autistic so the situation is slightly different, but the spirit is the same.

Jenny’s book is about Mother Warriors. And I realize that while externally I have acted like a mother warrior, internally I have not had that determination and belief. Part of me had a nihilistic, negative view that no matter what we tried, Nathan wouldn’t really get better. That we were trying because we had to try, but deep down I didn’t believe he could improve. Deep down I didn’t have faith.

And the main reason for this lack of faith is because I wondered, what does it matter? So what if Nathan walks and talks? He’s healthy and happy. What more could I ask for?

But today a genuine Mother Warrrioris born. Today I will stop being afraid to have hope. Today I will know that no matter what happens Nathan is perfect, but I will believe that Nathan has the potential and capacity to learn more. Today I will believe that Nathan can be both healthy and happy AND have some life skills.

Today, I will stop limiting Nathan’s future in my heart and I will see his limitless potential. Not just for gross motor development, but also as a human being to develop more qualities of love and caring.

A couple of weeks ago a wonderful friend gave me the movie “Peaceful Warrior“. What a beautiful message. I have been trying to remember that a peaceful warrior abides in the present, a peaceful warrior “takes out the trash” which is holding on to the past and fear for the future. A peaceful warrior is fully present in the moment, only the moment. A peaceful warrior can work towards a goal while abiding in the present.

So today a Peaceful Mother Warrior is born. One that sets no limits for her child, one who believes in her child’s potential, while accepting who her child is today and loving the child that she beholds in front of her.

I have more photos from our trip:





These are the photos that I took while we were in Dominican Republic for Nathan’s 2nd stem cell treatment. The hotel was all inclusive with lots of entertainment and activities and we had such a wonderful time.

Something finally shifted for me. After getting close to a nervous breakdown I realized that I have to take care of myself, slow things down, and remember what’s important – which ultimately, is Nathan’s happiness.

During our time in DR I really worked on relaxing (I know I know what a contradiction), I worked on remember what’s important to me, I worked on remembering who I am, who I have always been.

And the most important realization I’ve had is that no matter what happens I have everything I need. I worry and stress out about all the things I believe Nathan needs but ultimately he has everything he needs and so do I – people who love him, health, happiness.

So things have been a lot more enjoyable in our neck of the woods these days.

Since we got back, I’ve been trying to continue with a slower pace, trying to relax and enjoy Nathan more, and realizing that things will be as they will be.

I remembered that ultimately I can’t change anything, that all I can do is my best and then let go and have faith. I’d forgotten what it felt like to drop the delusion of control and just having faith, knowing that I have no ability to change things, that all I can do is have faith.

So that’s how things are going for us. We’re getting ready to go to Montreal next weekend for ABR. We are excited to get away and hang out together all day – the 3 Musketeers. We have a lot of fun together.

So far I am happy with the results we’ve seen after this last stem cell treatment.

His muscle tone has relaxed. He has more range of motion in his hips and his feet aren’t as tight all the time as before. His hands are more open and relaxed and he seems to have more control over them. His head seems stronger and today he held it up while in reclining motion (I’ll take a picture tommorrow). He is making more sounds and seems to be trying so hard to get words out. He is laughing more over lots of things…for example, he laughed when one of the cars in CARS said “Holy smokes!” – he threw his head back and started laughing.

We’re hoping to see more changes – particularly more of that head control!

We just returned from stem cell therapy in Dominican Republic.

I think pictures speak louder than words.




The “watching like a hawk” begins as we wait for miracles to start!

I’ve been reeling after reading this report:

I don’t understand most of what it says, but these 2 things caught my attention:

1. A tiny subdural collection is seen overlying the left frontoparietal region. It is isodense to brain and may represent an old hemorrhage.

A hemorraghe? No one told us Nathan had had a hemorrhage! Maybe that’s what’s causing part of Nathan’s difficulty developing?

2. The overall picture suggests a mild form of holoprosencephaly.

Mild? We were told Nathan had severe semi-lobar. Mild? He might be mild? Wow! Some mild kids can walk! Maybe the picture isn’t so bleak after all!

My conclusion to all this – we need a new MRI. Whereas before I didn’t want to sedate him unless it was 100% necessary, now I think it is. We need to know exactly what’s going on so we can treat him more effectively.