NovoGrow.com

Azriel, the most amazing therapist in the world, FINALLY has a website!!! WOHOOOO!

Novogrow.com

If anyone is interested in Medek therapy, Azriel is amazing. He is based in New Jersey but works with families from other States by doing intensives and teaching a home program.

He is the most compassionate, kind, smart, loving therapist in the planet and I can’t recommend him enough!

Yoga

Nathan started yoga today. A few years ago he had some sessions with the wonderful Catherine, who is certified by Sonia Kumar and her “Yoga for the Special Child” method. But at the time we were doing so much that I let yoga fall by the wayside. Last week I decided to try hot yoga again, after a 2 year absence. Right away Catherine mentioned that a training had just finished and there were many new people certified, and would I like Nathan to receive sessions. After my amazing experience with hot yoga, my answer was a resounding yes.

Today Nathan saw Analee, and I must confess I had tears in my eyes, watching her work with him. She was so respectful of him, so kind, so supportive. She explained to me that she wanted the sessions to be very holistic – not just stretching his body, but working with his mind and spirit. She never forced him to do anything he didn’t want to do, made it very fun, playful, and relaxing. Nathan was very happy throughout the session and was very communicative of his pleasure or displeasure.

I feel that this is a perfect complement to Nathan’s current program. He is receiving medek sessions every day. He does hippotherapy once a week. Rolfing massage once a week. And speech therapy twice a week. Adding yoga plugs in the stretching component and is another way for him to learn how to relax his own body, as spasticity is such an enemy to him.

Overall I am so pleased about this new development. Next I am going to take Izzy to yoga classes – she really needs something to help her calm down! It sure is helping her mommy to be more relaxed and happy :-)

Bits

* It was dark and we’d just gotten home from dinner and the store. I had my phone in one hand and a used cup in the other. I was watching Izzy and tossed the cup into our large outside trash can. I walked inside and noticed that I was still holding the cup. Yep, you got it – I tossed my Iphone into the trash! Makes me wonder….where’s my mind??!!!

* Nathan is doing SO MUCH better. He is BACK to his happy smiley self. I can’t tell you how wonderful it is to see him feeling well again. We decided to take him off his diet so we could fatten him up – he lost a ton of weight in the hospital. He’s been eating like a pig! He wants to eat EVERYTHING! Today he had ice cream and pancakes – two huge nono’s – he was sooo happy! Already I can see cheeks forming. Hooray!

* Today I decided to blow off his daily therapies and we had a lovely chill out day. After school we went to the park and walked and played in the playground. Then we went to Coldstones for ice cream. We got home and played on the Dynavox. Then we jumped in the pool. Afterwards we went to dinner and then to the store looking at patio furniture. It was a perfect day – he was sooo happy! I loved forgetting all of Nathan’s “extra” needs and just doing what we’d be doing if he didn’t have special needs.

* One terrible thing about Nathan’s recent illness is that he completely lost all of the progress he’d made in therapy in the last year or so. He can’t sit any more, his trunk is jelly again, and his head super wobbly. I’m not sure how this happened – but it sure is sad to lose everything he worked so hard for over a very long time. We are back at square one – but at least we are appreciating his health and state of mind.

* Looking back on Nathan’s recent illness, it makes me furious as most of it was hospital error. He was admitted due to dehydration. Then they failed to give him potassium, even though that’s medicine 101 when someone is dehydrated and vomiting. The low potassium gained him 3 extra days in the hospital, as it messed with his heart and knocked him out for 2 whole days. They waited 3 days to treat him with antibiotics, which meant he continued vomiting because he still had the infections in his body. So of the 6 days in the hospital, probably 4 could’ve been avoided with proper medical care. Which is the reason I HATE going to ER and why I don’t trust doctors. I am trying now to set up home health care so in the future, if Nathan gets sick, we can manage it all at home. I am working with his doctor so we can have a nurse set up an IV, test his vitals, etc etc. In the end it was his pediatrician who noticed the negligence at the hospital, took over his care, and fixed all of their mistakes. So what’s the point of taking him to the hospital when she can manage his case from home? Next time I am not risking my kid’s life by taking him to the hospital.

* I was looking back at last year and I realized that, after receiving 50 HBOT treatments, Nathan’s health improved considerably and that’s when his cognition started taking off. He barely got sick for several months after the treatments. I have started trying to figure out how to take him back to Irvine so we can do another round of 40 hbot treatments. Hopefully we can do this soon!

When is enough enough?

A good friend called me recently and left me a message.  She verbalized a question that I ask myself almost every day.  It goes something like this:

When do I draw the line?  How do I know when enough is enough?  I have traveled all over the world to help my daughter.  I have spent hundreds of thousands of dollars.  I have dedicated so much time, energy, hope to my daughter’s recovery.  She is doing better but not as well as I’d like her to.  I’d like her to have more function, more independence, more freedom.  But we’ve done everything and her progress is not as significant as I’d like it to be.  Should I keep spending all my money and energy trying to help her? When is enough, enough?

I hear you sistah, I wonder the same thing, day after day after day!  The more money, time, effort I spend on Nathan’s rehabilitation, the more I wonder if it’s worth it? And when is enough enough?

I listed everything we’ve done the other day – we’ve done SO much.  We’ve spent every dollar we’ve had and haven’t had for the last 4 years on Nathan’s rehabilitation and health.  I’ve worn myself into absolute exhaustion.   And as a business woman I can’t help but do an ROI analysis – what do we have to show for all of this effort?

In terms of gross motor progress – not much.  Fine motor development – none.  Fortunately we HAVE seen tremendous cognitive gains so our efforts HAVE paid off in a very important way.

It’s impossible to measure a true ROI because in a situation like this – everything matters!  I would do it all over again so that Nathan could have the freedom that he displays using the Dynavox and being able to communicate with us.  I am grateful for every little thing he can do.  Most importantly, could it be that all of the therapies that we’ve done for him have contributed to his good health?  To the fact that his body structure is in decent shape?  That he has not been hospitalized in 4 years?  That he is a happy child who enjoys life?

Anyways, I HAVE come to some conclusions that I wanted to share with her.  Since we haven’t been able to speak on the phone and I’ve had similar conversations with a few moms, I thought I’d share some of these conclusions here:

*  I’ve decided that any therapies we do from here on after have to be SUSTAINABLE.  I am no longer willing to do therapies that we cannot do without sufficient frequency, intensity, and duration.  If I can not sustain them over very long periods of time then I think their benefit is minimal.  The only exception to this, in my opinion, is HBOT as it works well with short bursts of treatments.

*  As much as I can, I’ve worked hard to implement home programs for all of the therapies that we pursue.

- We do a CME home program, and Azriel checks in on our progress frequently through SKYPE.  He checks to make sure we are implementing the exercises correctly and changes the exercises once he feels Nathan is ready for different ones.
-  We get trained on ABR techniques and then we implement them at home.
-  I check in with Bonnie every 3 or 4 months and she gives us new programs to use with the cold laser.
-  We have a feldenkrais practitioner that comes to our house and works with Nathan twice a week.

*  The therapies mentioned above – CME, ABR, Cold Laser, and Feldenkrais – are the bulk of Nathan’s home program.  We spend 45 minutes a day on CME, 2 hours on ABR, 45 minutes on the laser, and 2 hours / week on Feldenkrais.  Once a week he does horse therapy, speech therapy, rolfing, and music therapy.  All of these therapies are either at home or within 10 minutes of our house.  All of these are sustainable over the long haul.

*  Changing expectations – A few years ago my expectation was for Nathan’s full recovery.  Then I modified my expectations to wanting Nathan to make some functional gains, like head control and sitting.  Now, my expectations have changed dramatically.  Today what I hope to accomplish with Nathan’s therapy program is to keep him as healthy and happy as possible.   Most of my expectations now revolve around Nathan’s QUALITY OF LIFE.  Every little thing he can do improves his quality of life.  Even if he doesn’t make any functional gains, my primary expectation is to keep his body in good shape so that he doesn’t experience a lot of deterioration and pain.  For example, I know hip surgeries can be quite painful and the recovery very long and difficult.  I know that if he develops scoliosis that can lead to a lot of pain and discomfort.  So my goal is to keep him as healthy as possible so he can continue to enjoy his life the way he does now!

*  We have a budget now.  Before, we spent everything we had and didn’t have on therapies.  If we didn’t have the money, we’d put it on credit and then figure out ways to pay for things later.  Now, we have a budget and we limit what we spend.  Nathan’s therapies can be a bottomless pit and we are now prioritizing stability as a family.  We can’t be stable if we are always stressed out about how we are going to pay our next credit card bill.  So now we have a budget, and if something falls outside of that budget, we simply don’t do it.

*  Enjoying life is therapy too!  We are also prioritizing enjoyment as a family as part of Nathan’s rehabilitation.  For example, in the past, I wouldn’t have dreamed of spending money on something that wasn’t directly or indirectly related to Nathan’s brain.  Now, we are starting to plan things like family vacations – not around therapy trips – but just for fun!  I am starting to realize that living life is as beneficial to Nathan as therapies, so we are starting to talk about ways of bringing more fun into his life!  I mean this kid hasn’t been deprived of fun at all – but we are simply prioritizing FUN more and trying to come up with ways to bring him more enjoyment.  For example, this month he went to an Imagination Movers concert, and he LOVED it!

*  So when is enough enough? First I will summarize the key points:

- Nathan will always need therapy.  He needs it for his health and well being.  So therapy will ALWAYS be a part of his life, our life, our budget.
- The difference is the expectations.  By removing the expectation of full recovery or functional gains, we take away the pressure and simply see therapy as part of improving his quality of life and health.
-  The therapies we do have to be sustainable and to be supportive of our family unit – not subtractive.   If it takes away from our wellbeing as a family, then it’s probably not worth it.

I will never say “I’ve done enough” and stop Nathan’s therapies.  I believe that would be seriously detrimental to Nathan.  Right now, this moment, what we are doing is enough for Nathan.  There is much more I could be doing but I am just not willing to sacrifice our quality of life.  Right now we are offering Nathan the best we can given our circumstances and this is enough for me.

My teacher once told me, “If Nathan walks, talks…doesn’t matter!  What matters is he is healthy, he is happy.  Life is short.  Meaning is not based on whether he walks or talks.  Meaning is based on his happiness, his state of mind!”  It’s taken me a long time but with every passing month, year, I understand this profound advice more and more.

Random

Combining CME with Whole Body Vibration

Isabelle walking (sorry for the bad quality I’ve had a hard time catching her while having the camera etc)

Nathan during his home CME therapy

Belle cheerleads for Nathan during CME

Pictures of Isabelle walking (sorry they are not clear I still do not know how to catch motion without it blurring)

Persistence

I may not be many things, but there is one thing I am – PERSISTENT. I have a hard time giving up. Where I see potential, I see opportunity. Where I see opportunity, I see the need for extra effort. Where I see the need for effort, I give it all I’ve got.

So a couple of days ago I was ruminating about our experiences and realized, wow, we have tried so many different things with Nathan. So I figured – why not compile the list?

So here it is!

* IMOT – 3 rounds of 3 weeks each
* Stem Cells – 3 shots
* HBOT – 50 dives in a hard chamber
* mHBOT – about 100 dives in a soft chamber at 1.3 ATA
* G-therapy
* Cold laser therapy
* Reflex Integration
* Reach (derived from IAHP) – 6 months of intensive program
* IAHP – 3 months of intensive program
* Vital Stim
* Aqua Therapy
* Hippotherapy
* Brain Powder
* Chiropractic
* NAET allergy elimination
* Acupuncture
* Brain tuners
* Reiki
* ABR
* Treadmill therapy
* Homeopathy
* DAN protocol
* mB12 shots
* Glutathione shots
* Intensive supplementation (wide variety of supplements)
* Cuevas Medek Exercises
* Anat Baniel Method
* Feldenkrais
* Tomatis
* Music therapy
* Rolfing
* Massage therapy
* Chinese Herbs
* Osteopathy
* Craniosacral
* Theratogs
* BodyTalk
* MudPacking

Some of these we only tried a few times, others for many months.

I’ve been told that I may be overloaded with persistence but that I lack consistency. Perhaps they are right. But the enemy of consistency is sustainability, if you do not choose wisely. And most of the times I chose things that were not sustainable within the parameters of our lifestyle. Which then led to a lack of sustainability.

Sometimes I wonder what would’ve happened if I’d stuck with a few of these. Where would Nathan be today? I know that at every step of the way I did what I thought was best. But maybe my best just wasn’t good enough, because I didn’t give some of these therapies enough time?

We’re about 2 months shy of having maintained a consistent schedule. For almost 1 year we have been doing the following therapies sustainably:

* CME (at home, with one intensive with Azriel)
* ABR (2 hours / day)
* Cold Laser therapy (45 min’s / day)
* Feldenkrais / ABM (at first we did a few intensives, now we’ve settled into 2 lessons / week)
* Rolfing
* Hippotherapy
* Music therapy
* Speech therapy (Dynavox training)
* Supplements
* Chiropractic
* Homeopathy

This routine seemed to be working so well until a few months ago. His body was getting looser. He learned to walk in a Pony walker. He started sitting when placed in a sitting position for longer and longer periods of time. He started gaining mastery over the Dynavox.

But as of November of 2010, we’ve started another period of low immunity. He’s been sick every other week or so for the last 4 months. We have been working with our regular team to figure out why this is happening but unfortunately we have not been successful in helping him overcome whatever’s affecting his immune system. Hopefully we can figure this out so he can continue with his physical development.

And going back to the original point of this post. What do I think of all of the therapies we’ve tried?

I think there is merit to all of them. They each have their benefits. However, if I could sum what I’ve learned in the last 4.5 years into one word, I’d choose: SUSTAINABLE.

Any therapy can work if it is done sustainably and with enough intensity. Of course I think the degree of brain injury affects which therapies would work most effectively. But I believe that whatever we pick has to be sustainable for it to have a significant impact over time.

So yes, we need persistence – especially when we do not see immediate results. But we also need the wisdom to choose what is sustainable because our children need extra repetitions of everything, over extended periods of time.

I wish I’d known this when I started this journey.

Horse Therapy and Music Class

Nathan is doing much better. He is healing. We never did get in to see the doctor because he started feeling and acting better. My diagnosis: cold with severe food allergy. We cleaned up his diet and things improved, and now we’re using our typical repertoire of homeopathics and vitamin C to get him all healed up.

Owen and I are firm believers that Nathan feels better and heals faster is life goes on as normal. So unless he is seriously ill, we continue to take him out and about, we send him to school, etc. The joy and entertainment of these activities I believe take his mind off his misery and help him recover quickly.

So we sent him to horse therapy yesterday and music class today. He LOVED them both!

Guess who’s now riding the horse all by himself?? Yes, you guessed right.

[simage=2106,max,n,center,][simage=2105,max,n,center,][simage=2104,max,n,center,][simage=2103,max,n,center,]

Although he still doesn’t have much control and requires almost a max assist, his horse therapist believed he was ready to ride alone, and for her to remove some support and give him more control. So far it’s much more work for him but he seems to really enjoy riding.

When he got on the horse yesterday he was just so tight, his adductors and arms were incredibly rigid. Mrs Becky worked hard on getting him to hold the saddle and hold himself so that his arms would relax. The child I got back after 30 minutes on the horse felt like a different child – his arms finally lowered and relaxed, his hips were wide open, and his muscle tone felt so much better all over.

I am begging and pleading them to give him more time. I think if we can get Nathan on that horse at least 3 times a week we’d see him getting stronger. They told me they’d get back to me soon. I hope I hope I hope!

Oh and while Nathan rode, Belle had a photoshot modeling one of the dresses that Great Grandma Celia made for her!

[simage=2102,max,n,center,][simage=2100,max,n,center,][simage=2098,max,n,center,][simage=2097,max,n,center,][simage=2096,max,n,center,][simage=2095,max,n,center,][simage=2093,max,n,center,]

Today we went to music class with both kids. Both of them love it so much – Nathan much more than Belle. He LIGHTS UP when he sees the place and beams through the whole class. And cries when they start singing the good bye song because he doesn’t want it to end.

Another SN mom told me about this program – so I thought I’d pass it on. It’s called Kindermusik. They have classes all over. It’s a WONDERFUL program and great for both of the kids….plus it’s something they can do together!

[simage=2107,max,n,center,][simage=2108,max,n,center,][simage=2109,max,n,center,][simage=2110,max,n,center,][simage=2111,max,n,center,][simage=2112,max,n,center,][simage=2113,max,n,center,][simage=2114,max,n,center,][simage=2115,max,n,center,][simage=2116,max,n,center,][simage=2117,max,n,center,] Belle is feeding Nathan a snack :-)

Oh and here’s a video of Nathan in music therapy this week before Lucas barked and scared him:

I know this doesn’t seem like much of an achievement but for Nathan it’s an inchstone, his arms are so spastic and dystonic, his hands too, that it’s incredibly hard for him to use them at all. So for him to be able to have both his hands open and to strum the guitar up and down takes a LOT! Oh the joy of inchstones.

Suit Therapy

This morning I got in my car at 9:55 and at 10 am on the dot I arrived at the new suit therapy center that Nathan will be attending. I am still pinching myself. I cannot believe it is this close..worse yet, that it’s always been there and I hadn’t found it! I guess the timing wasn’t right before.

Nathan worked for 2 hours with the therapist. She is AMAZING. She spent some time putting kinesiotape on him – on his neck and stomack – to help with his flexion, as the side of his necks and lower abs are very very weak.

Then she had him roll down a large foam. And guess what .. he was able to do it!! For the first time ever! She was impressed as she noticed that he knew exactly what to do when gravity doesn’t block him completely. He had SO MUCH FUN rolling himself down that wedge and we did it several times.

Then she put the suit on him and worked on sitting and standing on the suit. He was a bit whiney but he worked really hard.

Unfortunately for now she doesn’t have time to see as much as I want. Hopefully soon more time will open up and we’ll be able to see her at least 3 times / week! As of now we don’t have any more appointments as she is fully booked. So please pray that her schedule magically opens up!

I wouldn’t have picked suit therapy as my ideal therapy to have next door, but I am grateful that it is there and SUSTAINABLE.

She was also impressed at the work we’ve done with ABR. She noticed how good his chest and neck look, which is what we’ve focused on with ABR. Also, I noticed that Feldenkrais is also helping him as he was able to utilize what he’s worked on with feldenkrais in the rolling, movement of the hips and pelvis, and when she put him on the floor on his belly, he was trying to army crawl (which he’s been working on in Feldenkrais).

Now I have some big decisions to make about how we will have time to continue everything but I have some ideas that I will share when I am ready.

Feldenkrais / ABM update

A few people have been asking me about FK/ABM, and what we’re currently doing, so I figured it’s time for an update.

So 2 weekends ago we went to a Feldenkrais training with Mia Segal and her daughter Leora. Here’s an excerpt about Mia:

Mia’s expertise in rehabillitative and generative methods has been attained over a period spanning more than 50 years. After achieving certification and practicing as an Alexander Technique teacher, Mia met and became professional assistant to Dr Mosche Feldenkrais, creator of The Feldenkrais Method. From 1957 until 1973, Mia was Mosche’s only student of his developing system, in a collaboration that continued until his death in 1983. Over these years Mia and her family were deeply involved in the development and evolution of the method and she was entrusted to work with some of Feldenkrais’ most high profile clients (the likes of Israel’s first Prime Minister, famous musicians, athletes and scholars). Dr Feldenkrais was quoted as saying, “Mia is my best student and the only one to take my work beyond me”. The development of the method took Mia and her family to Japan, where she studied movement extensively, through a mastery of Judo (achieving a balck belt from the Kodokan, the University for Judo) and a study of Japanese healing methods.

Feldenkrais and Mia began to train students in the method worldwide, with Mia eventually taking the role of course leader before continuing Feldenkrais’ work of training batches of quality practitioners. To this day, Mia is the authority on Feldenkrais and has a mastery of teaching and performing the methods that are second to none.

Mia and Leora used Nathan as their demo child in the class, and worked with him for 3 separate sessions.

I was really impressed with their work. They made it all seem so simple! They explained that all the Feldenkrais movements are based on simple brain plasticity – stimulate the brain in a certain way, and repeat the movements, and the brain will establish and maintain new neural connections. They showed us a few ATM’s (awareness through movement) sequences to do with Nathan at home. Nathan responded really well and left the workshop with his head and trunk held high, his hips in better alignment, and more movement of his body. They also suggested for us to follow up with a practitioner named Eileen Bach-y-Rita.

We saw Eileen last week and LOVED her – she is great. She is very knowledgeable and Nathan responded really well to her. However she is in Culver City, about 1 hour away from us, so we can only go ever week or two.

During the training we also met a practitioner who has worked with children before and is trained in the RIE method (which I love). She came to our house last week to work with Nathan and it was an instant match! He loved her and she really clicked with him. And the bonus – she can come to our house!

So for 1 week now, Katie’s been coming to our house and working with Nathan. She is less experienced than Eileen or Cheryl but she has a good foundation and a deep love of the work and of children. Also the fact that she is working on our space and with Nathan’s toys I think is amazing because she is teaching him mastery over his space and how to use his own toys to play.

So my plan now is to see Eileen every week or two, followed by daily visits from Katie.

Then, every 3 or 4 months, we’ll go up to see Cheryl Eichner for a week. Of all of the practitioners I’ve seen, I believe Cheryl is the best one. It’s just that, right now, I can’t even handle the thought of traveling so I am doing the best I can while staying at home and maintaining Nathan’s routine.

Many people have asked – so what’s the difference between Feldenkrais and ABM?

Essentially, they are the same thing. The only difference is that Anat took Feldenkrais’ work and learned how to apply it specifically to children with special needs. She created routines and sequences and techniques specific to children experiencing developmental delays. But the foundation and basis of her work is Feldenkrais. So if there isnt’ an ABM practitioner near you, a smart Feldenkrais practitioner should be able to figure out how to apply the ATM’s to your child.

What I have noticed FK is doing is teaching Nathan what I believe is not available to him. Becuase of his genetic mutation, I think that the data about how to move is just not in there. The Feldenkrais ATM’s are teaching hims those movements that he doesn’t naturally know how to make, plus it is teaching his brain how to override spastic muscles.

I do believe there is great merit to the work and am going to try this for 2 or so more months at least before even thinking about reevaluating.

So we continue to stay the course! 2 hours of ABR every day, 1 hour of the laser, 1 hour of Feldenkrais, and we are still dabbling with CME and the different exercises. We had started, then stopped, then I am doing a trial run of it again to see if it helps him – but his legs are so weak and shaky that I want to make sure we don’t hurt him. We’ll see.

I’ll keep you guys posted!

Victorious

18 gallons of gas, 2 short 10 min stops, 1 soy latte with sugar-free vanilla and 1 shot of coffee (soy chai latte for Nathan), 2 jack in the box burger and fries, 5.5 hours, and 3 movies later (tinker belle, nightmare before xmas, and lilo & stitch 2), we made it home.

I feel victorious. I feel exhilarated. I feel hopeful.

And here’s the thing. If you asked me – what did Nathan gain this week? It doesn’t look like much. Hands more open. Arms less tight. More flexion, less extension. More interest and ability to play. Nothing major. A couple new words.

But he LOVES it! I can’t tell you how much that little boy loved his lessons. Every time he saw Cheryl, he lit up like the sky on 4th of July. Whenever he got on the table he was happy, ready to learn. It’s like he’s been ready and waiting for 4 years for someone to “unlock” him. He was so hungry to learn.

THIS is a therapy that we can do WITH Nathan, not TO Nathan. And it’s a chance for Nathan to learn and develop on so many levels. And, over time, maybe he’ll improve, maybe he won’t. Frankly, I don’t care. My boy enjoys it. It makes him happy. It gives him a sense of accomplishment. Every time he managed to do something, even the slightest movement, he would look up at me – “Mommy, did you see me? I did it!”

And today, as we were driving home, and we gave Nathan a cup of chocolate almond milk with manuka honey and rice cereal, which he loved, and when it finished, he said “mo mo mo mo mo” over and over, until we gave him another cup – I was thrilled beyond belief. Every penny and effort we’ve spent so far was worth it, for that single moment when my boy could tell me he wanted a 2nd cup of milk. Priceless.

So the million dollar question is – is this IT? Are you going to do anything else?

The answer – YES. I am sticking with my plan. I believe in my plan. It took me 4 years to figure it out. It feels right for Nathan, it feels right for me, it feels right for my family.

Feldenkrais (ABM), ABR, CME, mHBOT, LRI (laser reflex integration), and Gtherapy. This is our combo. This is sustainable for us. This targets everything. These work for Nathan. Sounds like a lot, but it’s not, most are passive and gentle, all work WITH Nathan.

I remember asking my meditation teacher once…will my plane ever take off? Will I ever get off the runway and climb climb climb until I can soar through the limitless sky? And he said…it may feel like you’ve always be on the runway, and that you’ll be on it forever…but trust me, one day you’ll take off, and even lifting your front wheels will feel so glorious, that slight elevation will change your life. And oh, when you soar…

So here we are. Slightly elevated. Just beginning. But we have the right tools on board. So off we go!

Ready for ABM

Happy 4th of July! I hope everyone had a lovely day.

We spent our day driving up to San Rafael, CA. Tomorrow Nathan starts his Anat Baniel Method intensive. He will be seeing Anat a few times, as well as some of the senior ABM practitioners at the center.

I never thought I could do a drive like that – but we did it! I drove for 7 hours with 2 very short stops. Belle slept the entire time, and Nathan was entertained watching movies. They didn’t fuss at all and everything went incredibly well!

We’re staying in a super cute renovated Victorian house close to downtown San Rafael. Tomorrow when I have more energy I’ll post some pictures.

We were too tired to go back out to watch fireworks, so instead we gave the kids a bath and are now settling down to a much needed sleep. Fortunately nanny McPhee Marta is here with me so I have help getting the kids sorted out.

I’ll post tomorrow with an update of Nathan’s first session with Anat!!

Insights

Today I read a book called “Your Inner Physican and You”, written by John Upledger, the guy who invented CranioSacral therapy. It was FASCINATING. For anyone who is interested in learning more about central nervous system function and how to improve overall physical and emotional health – I highly recommend this book.

Here are some of the highlights for me:

* Chronic conditions may be caused by subtle physical conditions such as positioning of the spine, skull bones, etc. For example, he describes reducing spasticity by working on cranial bones and the sacrum.

* There are emotional components to physical health. He describes a technique called somatoemotional release. By working with his hands he descovers areas of the body that have retained emotional trauma leading to imbalances.

* Subconscious memories can have very deep, long-lasting effects. He describes many stories of working with patients who’d had experiences when they were very young (one as young as 2 days old), and what they heard and felt changed their physical health for the rest of their lives. Think of all the things we do and say around our children that we don’t even think twice about?

* Intention matters. He describes the difference between healers is their intention and the belief in their work. He talks about healers who don’t really believe they can help, so they don’t. Then he talks about healers who have a profound belief in their work, so they have miraculous results. Intention also relates to the patient himself, therapists, parents, caretakers, etc. If we believe the person will not get better, it is likely he won’t. If we believe he will, he has a much greater chance of improvements.

* He talks a lot about hands-on healing and directional healing. He talks about simply using his hands to heal, without using specific craniosacral techniques. He describes feeling his hands heat up, and with this heat comes healing. He claims he has measured this heat and electrical responses when using his hands for healing and can scientifically proof the effect of hands-on healing. He also describes “directional healing” which means putting one hand on one side of the wound, and the other around the wound, and ‘sending” energy from one had to the other. This apparently causes healing.

Reading this book answers many questions I’ve recently been asking myself. Specifically:

- Why so some therapies work so well for one child, then you take another child and the therapy doesn’t help at all?

- Why do these very subtle therapies work so profoundly? ABR, Rolfing, ABM – they are all so subtle. Now I understand better. They are using energy to activate and strengthen the body. Most importantly they use energy to ignite the body’s self healing responses.

- Reading this book has given me a much better udnerstanding of ABR. This is exactly what ABR is – feeding the body and cells with energy. No wonder ABR is so effective!

- Why do I have to work on so many levels with Nathan? Because the body is so complex, and when the “quarterback” (the brain) doesn’t work, many things start to malfunction. If the craniosacral system isn’t working properly, many other bodily functions are negatively affected.

- Upldedger describes our Inner Physician – he claims we all have an inner physician that can help us heal. This is an innate desire to heal and improve. If you combine this inner physician with brain plasticity – then you can conclude that the body/brain always wants to learn and to improve. So what the lady from the Carter Centers told me about kids with holoprosencephaly not being able to improve – baloney. Perhaps it may require more effort and time and intensity – but kids with HPE are human and have craniosacral systems and inner physicians like everybody else, and the body’s tendency is to strive for healing. So if we provide opportunities, they will improve.

I have to admit I feel excited, encouraged, and so grateful that this book fell into my hands recently! I am more motivated and excited than I’ve been in a while!

News from Montreal

About a week ago I got an email from Ramon’s assistant in Canada confirming Nathan’s appointment in Montreal with Ramon. I almost went PLOP. I had made the appointment when I was in Chile, and then about 3 months ago I emailed them and asked for more information. I was told to email someone else, which I did a couple of times, but never heard back. I assumed our appointment was given to another child and I was so involved in the pregnancy and birth I didn’t think about it any more. So you can imagine my surprise when I received that email a week before the first appointment! But since I believe in serendipity I figured this was meant to be as I had just realized that CME was a KEY missing piece in Nathan’s puzzle. So going to Montreal would help give Nathan a jumpstart and then I figured we could follow up with a good daily home program.

So off Nathan went to Montreal on Sunday. Belle and I stayed home because we couldn’t get a passport for Belle so quickly, plus she’s just too small. I spoke with Owen today and he said things are going well in Montreal. I found them an apt on craigslist that is 1/2 block away from the therapy center – score! And the price was soooo right. The apt is located in a busy area so all they have to do is walk outside and there is stuff to do. Nathan LOVES it! Owen said he’s really enjoying being out and about.

As for the therapy sessions, Nathan is doing well. Ramon said he is pleased as he is picking up right where he left off in December. He said Nathan is a little bit weaker than before (to be expected as he hasn’t really had active physical therapy in 6 months). However, he is doing his exercises well. Ramon reported that today Nathan did an aerial stand at about 85% (which is great). Mary is filming everything but I dont have the videos yet, so this is what the aerial looks like (from our time in Chile):

Ramon said he believes Nathan has lots of potential – which was really exciting to hear!

This is still very much in accordance with the plan that I posted a few days ago. We are simply using Nathan’s holiday from school (he was off this week) to get the CME piece of the puzzle sorted out. We already have the laser part and the hbot part sorted. Now if we could kill 2 birds with one stone and also work on the ABR part since they are also in Montreal, I would be sooo happy! Then when Nathan gets home we will start with our ABR/HBOT/CME/ABM/Laser therapy combo.

I will keep everyone informed as I hear more news from Owen.

The Puzzle

Having a child with severe special needs is a little bit like receiving something like this:

At first you don’t even know how/where to start figuring out how to help your child.

Our puzzle contains pieces in all areas of development – sensory, cognitive, communication, physical, equipment, accessibility, medical, etc etc

I confess that today, I finally feel that we are starting to figure out how to put all the pieces together to form a cohesive picture – a healthy, happy Nathan who is living to the max and receiving all of the opportunities that we can offer him. Here is what our puzzle is looking like:

Anat Baniel Method

Creates brain maps for movement and association of body parts.

Having neural maps for movement and being able to feel his body parts and how to make them work together enhances Nathan’s able to integrate and use CME.

CME

Teaches the brain to fight gravity and helps strengthen physical and neural connections for movement and being upright.

But in order to gain the ability to fight gravity he needs the body to be strong enough to support him.  Muscles are very expensive and the brain sends them the wrong signals.  This is where ABR comes in.

ABR

Releases and strengthens the myofascia and deep connective tissue, which preserves structure and enables function

For example, strengthening the myofascia and connective tissue in the chest enhances helps with trunk control and respiration, which in turn improves oxygenation of the brain.

HBOT

Oxygenation of the brain helps to feed the body’s cells and to wake up dormant cells as well as improve the function of existing cells.

If the cells are being “fed” rich oxygen and they can absorb it better, the brain will experience enhanced function.  Now that the brain is receiving more oxygen, it also needs to receive the proper nutrients.

G-therapy

Stimulates neurotransmitters and acts as a nerve growth factor

Now the brain is receiving both oxygen and rich nutrients to enhance its development.

Reflex integration

If infant reflexes are retained, they can disturb some or all of the functions of highre brain centers, including behavior, learning and the integration of gross or fine motor movements.

Now that the brain is receiving all of the proper information (ABM and CME), as well as being “fed” the proper nutrients and oxygenation, it needs help removing the “obstacles” that keep it stuck in useless loops (infant reflexes).  Integrating these reflexes is essential to free the child to learn and experience voluntary movements.

Cold Laser Therapy

The light and waves of the laser penetrate the body and feed the mitochondria, as well as helps the cells to duplicate without cell memory.

Since the cells are being fed all the proper messages through ABM, CME and reflex integration, the “clean slate” cells can then function properly as they have no memory of “damaged” functions.

GFCF Diet

The gluten free casein free diet keeps his immune system functioning optimally, which frees up energy so the body can focus on development, not on fighting allergies or infections.

Supplements

Having a healthy balanced immune system enables the body to absorb nutrients which in turn enhance central nervous system development. Key supplements are fish oils which enhance brain development, as well as B vitamins and others.

Putting the puzzle together

These are the key pieces of Nathan’s puzzle. Now the question is, how do they come together?

In the mornings he goes to school, and works on:

Floor time to get him to move on his own, communication with his yes/no buttons, soon they will also work with him on the dynavox, time in the pony gait trainer, cognitive goals, social goals.

In the afternoons, this is his home program:

From Random

Every 3rd week, the 1pm activity is replaced by an hour of Anat Baniel Method therapy. He does 1 week on, 2 weeks off.

After 6pm he goes out with his dad to ride his trycicle which he loves, to go swimming, to go to the movies or mall or the store, etc. That’s his “relax” time. And on weekends … well … we do almost nothing therapeutic, other than love and chill therapy :-)

And my goal is to STICK TO THIS PLAN. We have explored enough, we now know what works and what doesn’t, and I believe this is what we need to do. Now, time for consistent hard work :-)

MRI evaluation

Nathan had his MRI evaluated by the Carter Centers for Research in Holoprosencephaly back in 2006. However, since he still had massive fluid build up in the brain, the data wasn’t completely accurate. Back in mid 2009 he had another MRI and I finally got the results today of the new MRI interpretation by the Carter Centers. Here are the results (click on the image to see a larger version of the document in Picasa):

From Random
From Random
From Random

(it was a PDF so I took screen shots of the PFD so I could display it here, so make sure you read it correctly)

Of interest:

* I was hoping that after 2.5 years of decompression, the results would be more favorable. Unfortunately, he is still classified as having severe semi-lobar holoprosencephaly.

* After his initial MRI evaluation, we thought he had NO corpus callosum. It turns out he does have a little bit of corpus callosum in the back of the brain! It’s very thin and only in the back – but some is better than none! This is GREAT news!

* In the original report, found HERE, it was reported that Nathan’s basal ganglia was completely fused. In this latest report, the fusion is a little bit less severe – classified as a 1 instead of a 2 (2 means complete fusion, 0 is no fusion). This gives us more hope for motor development.

* There’s less fusion than we thought in the back of the brain. Initially the separation of the brain looked miniscule..now we can see more separation in the back, but the front is completely fused and the middle is mostly fused.

* The cortex is slightly malformed, which wasn’t apparent in the initial scans.

So what’s the significance of all of this?

I called Nancy Clegg of the Carter Centers to review the findings and we talked for a very long time regarding the results as well as many other questions that I had.

She answered a significant question that I’ve been having. I have been feeling really awful, wondering what it is that I’ve done wrong that, even with all of the therapies Nathan’s had, he’s made so little progress. The only answer I could come up with was to blame myself for my lack of consistency. This was really weighing on me.

However, Nancy explained that at the Carter Centers and at Texas Scottish Rite where she works, they follow literally hundreds of kids with holoprosencephaly, and hundreds of kids with “straight” Cerebral Palsy. She told me it is important to make this distinction – there is a major difference between kids with CP and kids with HPE. She explained that the main difference is kids with CP suffered an insult to the brain AFTER having had an intact brain (even if this was only during gestation and the injury happens at birth). Kids with HPE NEVER had an intact brain – as this malformation ocurrs at 5 weeks gestation. Once a person has an intact brain and receives an injury, the cells have a “memory” of how the brain functioned before the injury, so it’s easier to restore function. She said that she sees great progress with most of her regular CP kids who have suffered “insults” either at or after birth.

The HPE kids, however, she rarely sees major progress. The kids that have semi and alobar HPE tend to make very little progress regardless of the interventions they receive. She told me that she doesn’t see much difference between the HPE kids that have received a LOT Of interventions, like Nathan, and kids that have just received minimal/maintenance intervention.

For some reason, fusion in the brain is very devastating and the brain can’t seem to find a way to compensate for this. They’ve seen cases where a child has had an entire hemisphere of the brain removed and the child eventually gains almost normal function. But with the HPE kids, this just doesn’t happen because the fusion seems to affect the brain much more severely.

Now I do NOT agree with her that interventions don’t make a difference – I have seen with my own eyes changes and improvements in Nathan. Perhaps we haven’t made great progress with Nathan’s motor control because that is his most impacted area. But everything we have done has given him other abilities – mainly cognitive – that he wouldn’t have gained otherwise.

Cognitively, Nathan is AMAZING considering the severity of the malformation. She was VERY surprised at some of the things that I told her Nathan can do and understands. For me this was reaffirmed in the afternoon when I saw Nathan breeze through his dynavox and tell us what he wanted to play with and what his favorite movies are. Even just 1 year ago he had greater difficulty with the Dynavox. So he IS learning and he IS making progress thanks to all of the therapies we’ve done with him.

BUT at least I did feel a bit better knowing that it’s not my fault that Nathan hasn’t made greater progress physically. She reiterated how impacted his “motor” area (the basal ganglia) is and how this fusion is a tremendous, almost insurmountable challenge.

I guess this is really significant for me because some months ago I had decided that diagnosis makes NO difference at all. You can read about my epiphany in the”What’s in a Diagnosis” post. My conversation with Nancy today helped me adjust my expectations. The diagnosis DOES have an impact – Nancy sees this at her clinic day in and day out, and she can say with 100% certainty that kids with HPE are very different from all of the other kids. So her words helped me adjust my expectations. I still believe Nathan CAN learn and Nathan’s brain IS plastic and malleable and has the potential for growth. But at least I can be realistic and know that the HPE makes a major difference in his ability to gain motor control. And this results in less pressure and stress for me – I don’t have to feel like I am failing him all of the time.

We talked about many other things (it was a long conversation), and it was helpful to hear her take on things as she deals with so many kids and families that have Nathan’s exact diagnosis. I mostly talk to families of kids with cerebral palsy and the truth is that the pathology is different, like Nancy explained. And even though I rejoice in the progress that all of other children make, when I am tired and worn out I feel sad that Nathan hasn’t made greater gains. But now I have a better understanding of why that is.

All of this said…I have great hopes for Nathan. I believe that we have found a fabulous combination of therapies that is working for him. Most of the therapies we are doing now (except ABR) address the brain and helps the brain re-map itself. For example, yesterday Victoria worked on “teaching” his brain what his lower back feels like. Today, she put him in “bridge” pose and he lifted his butt off the table!!!!!!! It was amazing to watch (sorry I was feeding Belle and didn’t catch it on camera). So if he can learn something like that from one day to the next – why can’t he learn more? Of course he can (and he will!!!!).

I don’t regret everything we’ve done for Nathan – I feel absolute peace that we’ve done everything we could. My one regret is about consistency. We’ve done a lot of different things but I never found things that I could wholeheartedly believe in. The first thing that I found that I could wholeheartedly believe in is CME (Cuevas Medek Exercises), but unfortunately this therapy isn’t sustainable for us as there isn’t a therapist on the West Coast.

Now I have other things I am developing tremendous faith in – ABM, ABR, Reflex Integration, HBOT, Rolfing, and G-therapy. Now, since I have strong faith in these programs, I have no doubt that I will be consistent because I can see they are working.

My plan is to “sustain” these therapies for the next several months at the very least and then evaluate again in a few months to see where we are. For now, I feel confident that we are heading in the right direction!

Goodness…

He did this over and over again, showing off his newly acquired skill. He did this after the first ABM intensive in February and then stopped, so it’s nice to see him doing it again, and more consistently this time. We’re so proud of you Nathan! It was so cute, he kept turning to his side and then looking at us and smiling, like he was saying, look mommy, I can do it!

I think the reflex integration therapy with the cold laser, combined with Anat Baniel Method, combined with ABR, combined with rolfng, is freeing him from infant reflexes and old neural patterns, giving him new information about his body, and strengthening his body to allow him to move a little bit more. How far can this get him? I have no idea. But he seems more in tune with his body, more in control, and is finally doing little new things every couple of days. And the key for me is: SUSTAINABILITY. Everything we’re doing right now is 100% sustainable. Hooray!

You can read more about the reflex work with the cold laser on the Quantum Reflex Integration site. I hope to do a more extensive post about this soon.

Blue Laser could lead to Autism Cure

Interesting article:

Blue laser could lead to autism cure

I guess we really are in the forefront of this therapy as we’re already using it therapeutically!

I’ll talk more about the laser as I learn more – I have a binder full of info that I will read in the next few days! But for now, everything I’ve heard about the laser is super positive.

Bits

* I just came back from Nathan’s room. I put him down to nap, on his belly, the way he has slept since he was little. 30 min’s later I heard him crying so I rushed to his room. Guess where I found him – on his back! He hasn’t rolled from belly to back in a LONG LONG time. Hooray!

* Today was a fluke, as we took away Nathan’s nap last week. He’s been doing great without his nap! But he went out to a play last night and got home late so I let him rest for a little bit. My little boy is growing up and not napping any more!

* Removing the nap has allowed us to do so much more with him. He is doing great with his new routine. He spends time on his back “integrating” what he learned during his ABM intensive last week. He spends time in the stander playing with toys, coloring, reading books. He spends time in the walker and in the merry muscles bouncer. Nanny McPhee Marta gives him massages and does reiki on him. He rides his tricycle and if the weather is good, he gets in the pool and works on exercising, head and trunk control. We are sooo happy that we’re finally getting a good routine down with him!

* Nathan’s Nanny McPhees Mary and Marta are AWESOME and both doing amazing with him. Mary does ABR on him every day, and Marta is doing the laser and stander and massage and reiki. Ask and you shall receive!

* We are on our 5th day of using the cold laser and I think it’s working! We are seeing a ton of little movements that we hadn’t seen before. As well as big movements like rolling! I think the combo of cold laser, ABM, ABR, G-therapy, nutritional supplements, GFCF diet, and exercise (pool or trycicle) is a really good one!

* Belle is doing great. She has gained 2.5 pounds already! She eats well, sleeps well, and demands to be held all the time. She is a love kitten and literally purrs when you hold her. She is a fabulous baby…but she is already spoiled and doesn’t like sleeping in her crib. So our days consist of nursing, burping, diapering, bathing, napping together, then it all repeats all over again. And…I love it!

* I am so grateful to have these 2 perfect beings in my life. I feel super fortunate!

* Please pray for a couple of my friends who are going through difficult times – K & E. I don’t want to write out their names, just please pray for 2 wonderful women who could use some prayers and blessings right now!

*

Anat Baniel Method – why we like it

Nathan just finished an ABM intensive last week, where he had sessions every day. I was hoping this would be a daily therapy but I was informed by his ABM therapist that we shouldn’t do more than a week at a time, and then we have to give him time to “integrate” the information that was given to his brain. So we are taking 2 weeks off, and starting again 2 weeks from today. In the meantime, check out this article, it is a wonderful description of ABM:

Rehabilitation Conference Extract regarding Anat Baniel Method speech by Katherine O’Neil.

I don’t know if it’s doing anything for Nathan yet…I’ll report if/when I do.

Update on Nathan

Ask…and you shall receive. After my post last week where I mentioned my desire to integrate everything we’ve done for Nathan into a routine…things changed. It looks like it’s all coming together!

Here’s how it’s all coming together:

1. ABM. Nathan started an ABM intensive today. Victoria came to the house and worked with Nathan for 45 minutes. Our plan is to do ABM every day for the next month or two.

2. ABR. We’ve been communicating with Leonid Bylum, the inventor of ABR, and he’s given us a series of exercises to strengthen Nathan’s neck. I will write a whole post on this soon, but for today, I’ll only mention this as it pertains to Nathan’s schedule. The wonderful Mary is coming to the house every day for 2 hours to do ABR on Nathan. She does the neck exercise for 1.5 hours, and then takes him out for a tricycle ride for the last 30 minutes.

3. Communications. Starting in a week or two, Nathan will have his old speech therapist, the amazing Mrs. Nikki, coming to the house to work with him once a week. She will work with him on the Dynavox and on other communication methods. Every day, we will work on the homework that she gives us so we can start really emphasizing communication with Nathan.

4. OT. The fabulous Mrs. Ronna will come to the house twice a month to work with Nathan on OT / Speech. She will support Mrs. Nikki on building a communication plan for Nathan, and helping us to implement it. Once a week, Nathan’s incredible early intervention OT will come to work with Nathan on traditional OT stuff

5. Education. I am talking to a lawyer so we can get help working with Nathan’s school. More on this later. My goal is to maximize the time Nathan spends at school so it’s not wasted time, and so that the time he is at school he is learning useful skills that build on what we’re doing at home.

6. We found Nanny McPhee. She heard my plea and came to us. Marta is a Colombian lady who we met through another parent of a child with CP in our area. She was looking for a child to love and work with and we were looking for someone willing to “go the distance” with Nathan. She will be helping me to implement all those other things that I was worried he wasn’t getting to do.

Here’s what Nathan’s schedule looks like, as of this week:

8 – 12:30 School
12:30 lunch
1 ABM
1:45 Nap
2:30 Stander / Dynavox

3 Playing on his back / Cold Laser Therapy
3:30 Hart Walker
4 Snack
4:15 ABR
5:45 Pool
6:15 Dinner
6:40 Tricycle

7 Out with dad
8 Bedtime

This will of course change a little, especially as we have to accommodate his Speech therapy appointments, but in general this will be what the schedule looks like. Our plan is to phase out his nap completely since Nathan is almost 4 now and we think he’ll be okay without napping.

So between Mary and Marta we have 2 wonderful Nanny McPhee’s that will help us integrate all of Nathan’s therapies in a consistent manner. I believe that if we can stick to a consistent schedule, Nathan will start showing progress in all of these areas!

As you can tell by my use of adjectives in this post, I am thrilled with the “team” that we have gathered around Nathan and I feel strongly that this team will really help Nathan stay healthy and make progress.

I leave you with a cute video :-)

PS. Sorry I’ve been out of touch with everyone! I’ve been in hibernation! I didn’t get to enjoy the newborn period with Nathan so I am doing my best to really enjoy every minute of this time with Belle. I keep my phone off most of the day and stay away from the computer. Plus every time I sit down at the PC, Belle squeaks. She likes to be held :-) Please forgive my silence!

Bits

* Nathan and Owen are on their way home right now! They finished 20 hours of intensive therapy and 10 HBOT dives. Plus they had a fantastic time hanging out together. I don’t think they missed me too much :-)

* I had an OB appointment and Belle’s C-section is scheduled for Monday April 26th! We’re not sure of the time yet. I cannot believe that Isabelle will finally be here in 16 days! Today I felt her drop lower into my pelvis and she’s definitely head-down now according to the OB. I can’t begin to describe how excited I am!

* We’re back in full house redecoration mode. My wonderful mother and stepfather have been at the house almost every day this week helping to clean, paint, organize. Today we cleaned and organized the garage and it’s now a little therapy clinic! The change has been INCREDIBLE – I promise to put up pictures this week.

* Belle’s room is just about done. We have EVERYTHING ready for her – including diapers, pacifiers, clothes, blankets, stroller, car seat, hats, mitts…EVERYTHING. The only thing I have left to purchase is a double stroller. Erin, Fletcher’s mom, said it’s a MUST so I can hang around with both kids.

* In about 12 hours we’ll be at the Abilities Expo. Don’t worry – I’ll take lots of pictures! I’m going to be scouting out a lot of stuff – a new wheelchair, an adapted tricycle, communication stuff, lawyers, vehicle conversion info and ramps, and a few miscellaneous things we need. We’ll also be meeting with the manufacturers of the KidWalk so they can adjust / improve how it functions for Nathan.

* Our therapy plan for the next few weeks is as follows: every other week he’ll do ABM intensives – every day for 1 hour – with a trained practitioner (week on, week off, etc). Then in the late afternoons he’ll have 45 min’s of a CME home program, and 1 hour of ABR. Twice a week I’ll take him to a Rolfing practitioner. Once a week he’ll have Speech Therapy at home, and once a week he’ll have OT at home. In a couple of weeks he’ll start being evaluated for his ABA program – I’m starting the parent training portion of ABA next Tuesday. We’ll continue giving him his supplements, G-therapy, and B12 shots. Finally, I’ll do Quantum Reflex Integration (with the laser) with him twice a day for 15 min’s at a time. Oh, and I’m taking him next week to a guy who works on helping kids eliminate infant reflexes. He’s supposed to be a master of eliminating these reflexes and claims he can get rid of all of Nathan’s reflexes – ATNR, babinski, etc – in just a few sessions. So that’s the plan for the next 6 weeks or so. I have no idea if it’ll actually work – but at least it’s a plan! I’ve been working tirelessly to get everything lined up for him, so when Belle is here and taking up a lot of my time, Nathan will have a strong, stable routine.

* I can now say that I know how to cook! I never thought I’d see the day!

And with that…I better go downstairs to turn off my latest crock pot creation. I hope to put up some photos and videos of Nathan’s week and the expo this weekend! And I can’t believe I’ll be 30 years old so soon!!!!! Now if only I could convince Belle to share my birthday with me ;-)

Napa Center in the news!

New Hope for Kids with Disabilities

This is why I LOVE Napa Center.

They have AWESOME, caring, compassionate, knowledgeable therapists. Not only are they fantastic at what they do – everyone there CARES and does a great job at helping kids.

Although Nathan is not at the El Segundo location, he is working with the NAPA therapists at the California Integrative Hyperbaric center so we can integrate both suit therapy and HBOT. Tomorrow he’ll finish his 80th hour of suit therapy – and his 50th hbot dive!

40 Hbot Dives – COMPLETED!

A real quick post today – Nathan and Owen are home! They finished 40 dives today! Wohooooo!

Nathan was SOOO happy to be home – I think he was ready for his house, his food, his bed :-)

Nathan just passed out and Owen and I are going to spend time together so this is it for today – Have a great weekend!

Exercise with Oxygen Therapy & Whole Body Vibration

I went to see Dr. Kenny today and she told me about a new things she’s been offering her patients. It’s called exercise with oxygen therapy. Knowing how much Nathan’s benefited from HBOT thus far I was really interested in hearing about it. But instead of telling me about it – she made me try it.

Basically she had me on an oxygen concentrator with a little bike pedal type thingy. I wore a nasal cannula so the oxygen was blowing directly into my nostrils.

Here’s kinda what it looked like:

With oxygen coming from a machine like this:

Pedaling a thingy like this:

The reason for it? Increasing oxygen supply and absorption to the body.

Here’s a brief explanation that I found on the internet:

Oxygen is our most important element for life. Wellness is totally dependent upon it. So far as body function is concerned, if you don’t use it you lose it. Any activity increases the human body’s need for oxygen. So we exercise with extra oxygen and whoopie!! Just a 30-60 minute session on our home model oxygen bar displaces harmful free radicals, neutralizes environmental toxins, and destroys anaerobic infectious bacteria, parasites, and microbes. Not to mention all the cellular repair you get.

Source: http://oxygen-therapy.biz/ Check out their page for a great explanation, or do a Google search, there’s quite a lot of info about it out there.

I have to admit that after about 15 min’s of this combination, I felt REALLY good! I left feeling more energized and with a sense of well-being. My interest and curiosity was piqued.

So as usual, my mind was off like a rocket. Hmmmm. Wouldn’t this be amazing for Nathan. This would be a fabulous complement to his home program. How can I get this set up for Nathan.

Then I remembered a conversation I had with another mom a couple of days ago. She was telling me that there is a way to modify the soft hyperbaric oxygen chambers to achieve a higher ATA. Currently Nathan is diving at 1.5 ATA in a hard chamber. The soft chamber that we have at home only goes up to 1.3 ATA. So after leaving Dr. Kenny’s, I was like..hmmm…if I can get this oxygen tank that Dr. Kenny has, and get that cannula into the chamber, and modify the chamber to go to 1.5 – VOILA! Nathan would get the same benefit from HBOT at HOME!

I started calling around and I had to admit that what I discovered made me laugh. It turns out that we ALREADY HAVE an oxygen concentrator! So all this time I could’ve been able to do BOTH of these ideas – diving in a hard chamber at 1.5 with 95% oxygen, and doing exercise with oxygen therapy! We had all the tools right in our own garage!

I had no idea that you could use the oxygen concentrator with a nasal cannula, I thought it could only “blow” oxygen into the chamber. I’ve had the chamber for over a year but we stopped using it because it didn’t seem to be working. It turns out there was a pot of gold in my own backyard and I didn’t even know it ;-)

Then I started thinking..well…how do I add in the exercise component?

I’ve solved one problem already – how to keep Nathan going with HBOT without having to go so far away. But what about the Exercise with Oxygen idea?

Two things occurred to me – what if I put him on the oxygen while I have him in the stander or the Merry Muscles? This way he is “exercising” WHILE receiving extra oxygen. The oxygen concentrator has wheels so I can move it around. It doesn’t have to stay with the chamber. So I can use it for dual purposes – in the HBOT chamber as well as while he’s “exercising”.

Then I remembered an infomercial I saw on TV a while back – exercise passively on a vibration platform! I started looking around and found this article: Whole Body Vibration Therapy.

I kept searching and found this study: Effects of Whole Body Vibration on a Child with Cerebral Palsy.

Of course once I started I couldn’t stop and I’ve been looking into this for a while now and … hmmm…. I think I’m on to something! No one’s ever mentioned this to me before (I’m surprised), but it seems to have a lot of potential!

Now think of this..what if we put it all together? One dive in the chamber in the morning before school, then in the afternoon, I can put him in the LiteGait to suspend him over a vibration plate, hook him up to the oxygen concentrator, and let him watch TV???!!!!!

Things that make me go…hmmmmmmmmmm…………….

PS – I didn’t paste too many links here about Whole Body Vibration or Exercise with Oxygen Therapy. There’s a TON of info on the internet about it so have a look around if you’re interested in knowing more!

Update on HBOT and Suit Therapy

I mostly try to post the good stuff. But sometimes you get things like this:

Yes, he’s fully and truly asleep.

And other times, you get this:

The good news: Nathan’s done 37 dives and only has 3 more to go!

My boys should be back home by Friday afternoon, hooooray!!!!!!!!!!!!!!!!!!

Hbot day 6

Nathan has now completed 12 Hbot dives!

Today when I talked to him on the phone, I told him how much I missed him. I asked him if he missed me too. I heard a very very clear “Yeaaaaaaaaaaahhhhhhhhhhh”. He was so sweet!

Daddy reports that he behaved perfectly both in the chamber and during suit therapy. His therapist works with him outside where all the ladies are and he’s the center’s darling already. They all love him. Daddy also got him a soy chai latte and George his therapist used it to reward him for good work.

At dinner he refused his own food and ate most of daddy’s food. He went on the carousel twice and hung out at the Irvine Spectrum at night.

It sounds like he’s one happy little boy :-)

Marcela’s Views on Rehabilitation

People often ask me why I do so many things with Nathan instead of sticking to one and committing to it.

The answer is simple: I do not believe that any ONE therapy can address ALL of Nathan’s needs. Nathan’s cerebral palsy affects him in every way therefore his needs are varied and multi-faceted.

Below is a chart that I keep referring to and building on. You can’t read it here, but if you click on it and go to Picasa, and use their ZOOM function (top right with a + sign and magnifying glass), you will be able to see the picture more clearly:

I believe brain rehabilitation for a child as profoundly impacted as Nathan includes the following categories:

- Brain Repair
- Brain remapping
- Biological
- Structure
- Energy Work
- Exercise / Movement
- Communication
- Social / Emotional

I’ll describe what role I believe each one of these categories plays in the “big picture”:

Brain Repair

These are therapies that work on the brain itself without requiring participation. They work on a very subtle level by creating new brain cells, repairing damaged cells, and awakening dormant cells.

Therapies that belong to this category are: Hyperbaric Oxygen Therapy and Stem Cell Therapy. These are therapies that rehabilitate the actual cells of the brain. Stem cells create new brain cells and by having more cells available, improves the ability of the brain to communicate and function. HBOT improves oxygenation to the existing cells thus repairing damaged cells and awakening dormant cells.

Brain Re-mapping

The brain contains specific areas allocated for predetermined functions. For example, the occipital lobe handles vision. The basal ganglia coordinates movement, the cerebellum balance. Sometimes these areas are poorly developed. Therapies in these categories are meant to improve the definition and efficiency of brain mapping to improve bodily functions.

Therapies in these category include: Cuevas Medek Exercises, Anat Baniel Method, Institutes for the Achievement of Human Potential. These therapies give the body sensory input in order to improve the brains connectivity and efficiency in processing stimuli. These therapies improve dendriditic connections and density, thus leading to improved neural communication.

Biological

In order for the body, specifically the central nervous system, to work at optimum capacity it has to have proper nutrients and biochemicals, such as neurotransmitters. Sometimes, however, the body cannot produce specific biochemicals or is not communicating effectively due to improper nutrition or damage in the genetic code. This area addresses nutrition in order to maximize bodily function as a whole – not just the brain. For example, if the digestive system is impacted, the immune system suffers, thus affecting the central nervous system. So in this area I address the body as a whole by optimizing the quality of foods and supplements consumed.

Therapies in this category include: Biomedical, nutrition, and G-therapy. Biomedical includes identifying food allergies and other irritants, detoxification, and proper supplementation. Nutrition relates to proper diet with healthy organic, natural foods. G-therapy is a homeopathic treatment that stimulates neurotransmitters and acts as a nerve growth factor. Together these treatments help to ensure that the body and central nervous system has the proper nutrition, minerals, herbs, etc to function properly.

Structure

When there is a brain injury, the child doesn’t move the way a typical child would, and this affects how the structure of the body develops. This in turn affects messaging to and from the brain, which again results in functional loss. It also leads to lots of pain and problems if a child develops problems like scoliosis, hip dysplasia, etc. This section addresses the structure of the body, including proper alignment of the spine as well as proper alignment of every part of the body. With incorrect alignment comes loss of function, so therapies in this section seek to improve structure in order to maintain health and to improve function.

Therapies in this section include: ABR (Advanced Biomechanical Rehabilitation), Osteopathy, Rolfing, Chiropractic, and Yoga. Each of these provides feedback to the body in order to preserve and/or correct alignment of the body.

Energy Work

The body has an innate ability to heal itself, but if there is a breakdown in energy flow, problems follow. This section addresses the subtle body and seeks to preserve and maintain overall health by enhancing energy flow.

Therapies in this category include: reiki, acupuncture, and body talk.

Exercise / Movement

Typical children spend the vast majority of their days running, jumping, playing, moving, exercising. Children with even mild movement problems may have difficulty engaging in these activities. Especially in the early years, the brain requires movement and proprioception to form connections and to enhance its development. The body also requires movement to remain healthy. Therefore therapies in this category are meant to keep the body healthy and to stimulate the brain.

Therapies in this category include: Suit Therapy, physical and occupational therapy, aquatic therapy, and hippotherapy. Notice that I am including physical and occupational therapies in this category. I believe these are valuable therapies in that they provide exercise and feedback to the brain, and can be very effective especially with children with mild injuries. But I believe that children with severe injuries need more intense interventions that address the brain.

Communication

Obviously it is important to address the child’s ability to eat, swallow, talk, and communicate. These improves brain development plus their quality of life.

Therapies in this category include: Vital Stim, Beckman oral motor exercises, speech therapy and augmentative communication therapy.

Social/Emotional

A brain injured child is first and foremost a child and also needs time to play and socialize! I believe this is a key part of the mix. A happy child can overcome immense odds.

Summary

Even though there may seem to be overlap in some of these categories, each of these addresses different needs of a severely brain injured child. I believe it is important to address all of these.

In this list I have only included the therapies that I have found to be effective in their categories. More could be added but I have only chosen ones that make sense to me, that are theoretically sound, and that have had a positive impact on Nathan and/or on other children.

In some cases I do more than one therapy per category. I believe that it is all feedback for the brain and the more we stimulate the brain, the better. When possible I try to stick to one therapy per category or to select complimentary ones, but it all depends on life circumstances. For example, if I cannot do CME, I choose another therapy in that category. Other times I combine them and will choose one therapy per category every week or every two weeks. For example, week 1 he may have reiki, week 2 acupuncture, week 3, bodytalk, week 4 reiki, etc. I believe in this way we are stimulating the same systems in different ways and keeping the brain active and responding at a higher level.

I know many people choose to find 1 or 2 things that work and they stick to those 100% of the time. But me, well, I like to view Nathan’s rehabilitation as a holistic approach and believe that doing a little bit of everything will bring him the most benefit!

DISCLAIMER: I am simply talking about what I believe works for us, and for Nathan. Everyone has their own views and experiences and knows what work for their children! I just believe that sharing knowledge is helpful as it may spark ideas for others. I don’t think rehabilitation is a one-size fits all sort of thing – it’s just whatever works best for you, your child, your familiy! This is what I choose for mine!

Hbot Day 3

Maybe I jinxed myself. Yesterday I mentioned how well Nathan was doing with his Hbot. Because today, it was a total disaster.

We put Nathan in the chamber – as usual. Everything was the same. Then about 15 min’s later Kathie, Nathan’s nurse, went to find me to tell me Nathan was really upset and screaming in the chamber, so they pulled him out. I asked them to try again, but it was the same thing – after a few minutes, he started screaming bloody murder. We didn’t know what to think of it, so I took him to the RV and he took a nice long nap. We thought maybe that was it – he was just tired.

So after lunch and his nap, he went for his suit therapy. He was happy as can be! I was shocked to hear that he hardly cried during the 2 hours of suit therapy! He’s supposed to do 4 hours every day, but because of the crying incident, we allowed him to sleep and he only had 2 hours of therapy. As you can see, he’s happy as can be:

After suit therapy he had a snack, some water, and it was time for another attempt at HBOT. He was happy at first:

But about 15 minutes into the dive, he started screaming again. It wasn’t an annoyed cry, it was an blood curling, agonizing scream. So we depressurized, pulled him out, gave him water and hugs, tried again – same outcome. At that point we gave up for the day.

This is one of those times I really wish he could talk, so he could tell me what hurts.

So I decided to drive home to take him to his doctor in the AM, so we can at least rule out ear or sinus infection. If those are negative, then we’ll head back down and simply try again.

I’m “melt into a puddle” kind of exhausted, and gonna have an early night. At least I get to sleep in my bed tonight! Sweet dreams!

Perspective

My great friend Amber, Brandon’s mom, is my inspiration for today’s post. She has walked this journey with me from the very beginning, and has been a wonderful friend and support for me all these years. I love her attitude and her perspective.

Talking about perspective, below are a few pictures of Nathan’s brain:

From ax t2 gre s
From o-ax t1, flair
From o-ax flair
From 3 pl t2 fgre s

Here are a couple of examples of a healthy brain:

When I look at these pictures it reminds me of just HOW amazing Nathan is. You don’t need to be a neuroscientist to see the abnormalities in his brain. This is a child with not only severe holoprosencephaly, he has suffered damage from hydrocephalus and bacterial meningitis. I can easily name 50 things wrong with his brain. And if I wanted to start labeling all of his diagnoses,well, it would be a long post indeed.

I am just awestruck by just how extraordinary Nathan is! He is so smart, so funny, so sweet and sensitive. He’s so curious and loves to learn. He understands SO MUCH. He eats like a champ (have I mentioned that he’s now 28.5 lbs??!!). He’s starting to say words consistently: more, elmo, agua (water), nalga, orange, mama…today he even said BELLE! He laughs at everything. He only takes 1 prescription medication. Hasn’t been hospitalized in 2.5 years, and has only had shunt surgery. He is passionate about books and loves watching people. He is the biggest love/cuddle bug in the planet!

I know he hasn’t made much progress in motor skills…but when I look at those pictures of his brain and look at the child in front of me, I feel so much gratitude! He has overcome SO MUCH to be the extraordinary little boy he is today. I used to think that I would only feel truly happy when I’d gotten Nathan to some degree of physical functionality. I was so wrong! This child gives me so much happiness, just from being!

Talking about fun, today we went shopping for newborn clothes for Belle! We went with Nathan’s grandma, great-grandma, and greatauntma and they helped us pick out a bunch of outfits. Nathan had such a great time – he looked like a little prince surrounded by his adoring entourage. He is feeling much better – the doctor saw him and said his ear infection is clearing nicely and his chest is fully healed – he’s off all breathing meds. We’re just finishing off the antibiotics. We plan on heading back to Irvine Monday morning to continue our HBOT/suit therapy adventure!

A series of fortunate events…

…is leading us to the California Integrative Hyperbaric Center. Tomorrow. Yes, I mean like, Nathan will be finishing his first Hyperbaric dive in 12 hours. I’m a bit stunned by the speed of it all, and excited. Very excited.

I’ve posted here how much I’ve wanted Nathan to receive HBOT. But circumstances never allowed it in the past. This time we were guided and it all worked out beautifully.

Tomorrow morning at 6 am we will be taking my friend Aixa’s RV down to Irvine, where we will park it outside of the therapy center. By 8 am Nathan will be in the chamber receiving his first HBOT dive at 1.75 ATA and 100% oxygen. At 9:30 am, he will start working with a therapist from NapaCenter.org . Napa recently affiliated with the CIHC to run their intensive physical therapy program. So Nathan will get the benefit of both HBOT and Intensive Suit Therapy! He will receive 4 hours of physical therapy and then a 2nd HBOT dive in the afternoon. We will be down there for the whole month of February.

Okay, I can hear what you’re thinking from way over here. WHAT? I thought you said you were going to keep still for a while, and were done running around doing therapies. Now this??!!!

Unfortunately I’m not at liberty to disclose the details on how it worked out, but it did, what I can say is this was sent as a gift to Nathan. So off to Irvine we go. The good thing – it’s only an hour from our house, so we can come and go, and we don’t have to travel. We will be staying in the RV for the most part, but if for any reason we feel like coming home – it’s a relatively short drive. I just know I can’t make the drive every day, so we’ll be staying there most nights, and coming home on weekends.

Another exciting thing – we can do ABR in the HBOT chamber. So for 1 month he’ll get 2 hours of ABR, 2 hours of HBOT, and 4 hours of suit therapy! The HBOT and ABR will be painless for him and will require no effort. The suit therapy will be hard but I think he is ready for it. By the end of this week I’ll know!

Now I have to go and get us packed and the RV loaded and ready. I’ll write more tomorrow during Nathan’s first day! Wish us luck and send some prayers our way!

An ABM inchstone

I know this may not look like much…but it’s AWESOME for Nathan. Usually, Nathan’s pelvis is immobile. It’s like he has no pelvis – it has 0 mobility. After 1 week of ABM, he’s starting to realize that he HAS a pelvis and that he can use it to move!

In the video it looks like Victoria helped him, but he really did it by himself. He did it a few other times where it was obvious that she wasn’t helping him at all, but I wasn’t fast enough with the camera. He also did it yesterday 3 separate times.

The moral – ABM is working! This therapy WILL help Nathan! Victoria felt that there was a lot of subtle movements that opened up for Nathan, and she believes that with continuity of treatments, Nathan will understand that he CAN move. Wohooo!

Victoria wants Nathan to take a month off to integrate what he learned this week. We have something special planned for this month (more on that tomorrow), so it works out perfectly. Next month (March) we’ll do another ABM intensive, but for 2 weeks instead of 1 week. This is all very exciting!

Back on track

Today has been a wonderful day.

This morning I forgot Nathan’s wheelchair in my car at the mechanics, so when the bus came to pick him up, he couldn’t get on. He gave us a big lip and almost cried! He’s really loving the bus ride, and fortunately they agreed to pick him up last and rop him up first, so he’s only in the bus for 15 min’s max. He’s such a boy now! He’s starting to love cars and buses and little boy toys!

Afterwards, I pulled him out of school early and we went to see Dr. Kenny. He is in GREAT shape! His vital energy was at 996/1000 – meaning – he’s in great physical and emotional health! His vitamin protocol is about the same: B6, quantum brain complex, multi-pollen extract, omega 3 oil, eye q (oil), vitamin D, vitamin E, 5htp, Advanced brain nutrients, cyrofood, quantum nerve complex, neuroplex, nux vomica, phospholipids, and bulgarragus (probiotic). She tested him for the G-therapy and advised us to give him a 2 week rest period from the G. While we waited ad Dr. Kenny’s, he was standing against a chair, bearing weight, holding up his head, and turning the pages of the book. By the time I decided to film he’d been at it for a while and was tired, bu you can still get the idea:

Afterwards we went straight to his 2nd appointment with his new Anat Baniel Method therapist. It went FANTASTIC. This is such a subtle therapy that I can’t really describe how it works or what kind of effects it is having. All I know is that it “feels” right to me – my mommy gut is yelling YES YES YES! The therapist is only 20 minutes away so this therapy is completely SUSTAINABLE for us – this is my new favorite word :-) Our therapy plan/schedule is finally starting to fall into place – more on that tomorrow.

In the meantime, here are a couple of videos of Nathan in his ABM session:

How can so much cuteness fit into one little package??!!

What’s up!

It’s been quiet around here these days. Did we lose everyone during our vacation? If you are still here, say YO!

We’ve been busy little bees here at the Andrew house in Canyon Country.

Nathan is going to preschool! In the bus! He loves it! Every day the teacher tells me of new things he’s doing and how amazed she is by him. We are still trying to figure out what the best class will be for him, but check this out – his teacher has stopped by our house TWICE in the last few days to check in with me and let me know how Nathan is doing. She seems genuinely interested in his well-being so I am starting to put the mommy claws away and trusting that she has his best interest at heart. She told me today that they had him in a stander and he made choices with his hand, responding to a command to choose horse, cow, and other objects. He also did amazing at communicating with eye gaze. So as much as I resisted sending him to the local state preschool, I’m finding that sometimes when you let go a little and give up control, you find beautiful blessings just waiting to embrace you.

In other news: Nathan is now lined up for hippotherapy and aquatic therapy. I’m also thinking of having him start special needs yoga again. He will also be starting with a Rolfing practitioner this week.

And more exciting: He is going to have an Anat Baniel Method intensive next week! We found a local practitioner who is a mom of a child with special needs who learned the method. She is only about 30 min’s away! So next week Nathan will see her every day after school to see if ABM can be helpful to him.

We are also getting ourselves into the routine of doing an hour of ABR and an hour of CME every day. Things are falling into place for my little Munchkin!

Oh and tomorrow I have an appointment with the high risk perinatologist here in LA to take a look at Belle – I am excited and a bit nervous – throw a prayer up for us please!!!!

Hasta manana!

Gratitude

I’ve been thinking a lot. I’ve been looking back at the last 4 months, and looking at us now, and feeling … extremely grateful.

The Nathan I have in front of me is different from the Nathan that went to Chile four months ago.

- After 2 years of 0 growth, his head circumference increased by 1/2 inch! This is HUGE! He went from the 2nd percentile for head circumference, to the 25th percentile. You know what this means – BRAIN GROWTH!
- He has more overall control of his body. He can make decisions about how he wants to move, and then follow through (within his limitations)
- He can roll from his back to his side, allowing him to play with toys more effectively
- 2 days ago, his teacher at school told me he rolled from back to front
- Yesterday I left him on his back and put a fisher price bus next to him (thanks Julia!) and he was playing with it, rolling it front and back, back and front
- He can support himself in standing , with balance support, for a little while. Yesterday I was supporting him by the lower belly while he stood up and played with a toy hanging from the ceiling.
- I can now leave him on his belly or on his back on the floor and he will entertain himself for a little while.
- He sits better in his car seat and doesn’t flop all over the place.
- A couple of days ago he pulled the glasses off his great grandma’s face and brought them to his mouth.
- He is SO MUCH SMARTER! He is communicating more effectively, making clear choices, responding to questions, and just really showing that his cognition is greatly developed.

There are more little things like this but what I wanted to point out is that these are all NEW things that may sound tiny but they are HUGE for him, and for us. These tiny milinchstones amount to an improved quality of life for Nathan. And for this, I have immense gratitude to Ramon and his CME method.

If Belle weren’t on her way, I would sell my soul and stay in Chile as long as it took to give Nathan as much quality of life as I could. In fact I am planning to take Nathan back to Ramon after Belle is born. I wanted to clarify that my previous post didn’t mean that our time in Chile wasn’t worth it. It was by FAR the most worthwhile thing we have done for Nathan.

It’s just that in the end it came to a situation that I HAD to come home and I, as usual, am trying to understand this and see the best in everything that happens.

As I’ve had more time to think and process, I’ve come to realize that what became really hard for me about being in Chile was not the circumstances, but the expectations. Every day that I took Nathan to his CME therapy I “hung” my state of mind on the outcome of his therapy. If he did well I was happy. If he didnt’ do well I was unhappy. I think this is what made things very stressful for me and in the end caused all the complications.

Looking back I realize that this is what I have been released from – expectations. Somehow, the last 4 months brought me a much deeper understanding and peace about Nathan’s situation, and if he doesn’t improve at all any more, I am deeply grateful for who he is today. Removing these expectations is what is allowing me to feel greater peace and enjoyment of Nathan as my son and my role as a mother.

I still want to give Nathan opportunities. I would LOVE it if Nathan could learn to hold up his head, for example. If he could walk, I will become Mother Teresa and go to India to serve the poor. You know what I mean. I haven’t given up on this wish, nor have I given up on Nathan’s rehabilitation. I have just given up expectations. And I have come to a deeper understanding of what family means, what it means to be human, what it means to cater to everyone’s needs – not just one person’s. I want to continue helping Nathan – but the cost cannot be Belle’s welfare, or my own. That cost is too high and I am not willing to pay it. But if I can help Nathan at a reasonable cost, then I am all for it :-)

Everyone that sees Nathan today is AMAZED at how well he is doing. His doctor was just shocked at how smart he is, how much he understands, how strong his body is. His wonderful hippotherapy therapist was really impressed at his greater control and stamina. His teacher at the state school can totally see a difference between him today and the child she saw during his one day of school and the IEP and evaluations. And I am so grateful. Ramon Cuevas will be in my gratitude prayers every night for the rest of my life. I hope life allows us to take Nathan back into his capable hands.

In the meantime, I am trying to figure out what we’re going to do now and while we wait for Belle to arrive. The current favorites are: Napa Intensive, 1 hr of ABR every day, 1 hr of CME home program every day, possible Anat Baniel a couple of times a week, hippotherapy, and aquatic therapy. After Belle is born – we’ll see!!!

Everything happens…

…for a reason. I’ve always firmly believed that, and now I’m even more convinced than ever.

Let me tell you a couple of stories. The wonderful Cybell started reading this blog some months ago. She found our blog through Sonia’s (Mamaterapeuta’s) blog. When she found out I was in Chile, she emailed me and we hit it off from the beginning, it was like we’d known each other our whole lives. Her great friend Karym is Vicente’s mom, who has CP as well. We all met and got together and Karym and I hit it off too and we’ve all gotten to be wonderful friends. You’ve seen plenty of photos with them as we’ve shared many outings. Here is one:

From Vina del Mar

Both Cybell and Karym started taking their children to see Ramon about a month and a half ago. They saw what Ramon was doing with Nathan and were really interested.

Today I got a call from Karym giving me the most WONDERFUL news. Their son, Vicente is able to walk, but has never been able to stand up on his own. His independence was very limited because he requires assistance with a lot of things – like standing, stepping up and down ledges, etc. Well, check this out. This weekend, for the first time ever, Vicente learned to stand up ON HIS OWN!!!! He’s done it several times now!! This is incredible news, it means Vicente is now on a path to independence. Karym was just blown away, she couldn’t believe that in just 1.5 months Vicente learned something that he couldn’t learn after 3 years of traditional therapy. Vicente, we are so proud and so happy for you, way to go buddy!!!!

From Vina del Mar

This picture says it all, Vicente is about to fly fly away towards independence!!!

From Vina del Mar

And something else happened today which was pretty cool. I’ve had a vertebrae “out” on my spine for a while now. Lifting Nathan up and down and in and out of his chair has really put a strain on my back. So I went to a chiropractor down here but he didnt’ help much. I decided to try a masseuse but she called and cancelled on me twice. So I went online and looked for a chiropractor and found one who does home visits (yes, doctors and health care practitioners still do that in Chile, isn’t that amazing??!!!!!!). He came over and I found out that he is a physical therapist by trade who learned chiropractic and massage therapy. He did an AMAZING job on my back and if I hadn’t played polo right afterwards, I’d probably be all better already (oops). We started talking and I told him about Nathan and it turns out he works with many people with disabilities! So, since Nathan is only able to go to therapy with Ramon once a day, it ocurred to me to ask him if he’d be willing to learn the exercises so he can come to the house every morning and do a session with Nathan. Guess what – he agreed! So tomorrow Ramon will show me the exercises so Jorge, the physical therapist, can start working with Nathan in the AM’s. This way we can maintain the same level of intensity and we can keep Nathan going in the same trajectory. Plus, he can do adjustments and massages on Nathan too :-)

Everything happens for a reason my friends, and with faith and belief, everything always happens for the best! Just believe!

Of life and luck

I’ve been thinking of life and luck today. How lucky to be Nathan’s mom and to get to share his life. How lucky to have a little baby girl on the way. Lucky to have the wonderful friends and family that I have. Lucky to have met the man of my dreams and to have him be the father of my children. How did I get to be so lucky?

And talking about life and luck…today, Belle is 18 weeks pre-old. She’s so eagerly awaited. Nathan smiles every time I mention her name. Owen and I daydream about her when we talk on the phone. And grandma…well, grandma’s been busy. She’s been busy knitting. Lucky Belle is going to be a princess from the minute of her birth:

Now talking about luck, I have to talk about Lucky. Particularly, how lucky Lucky is. Nathan’s teacher from preschool, Tia Pao, fell in love with him and is going to adopt him. The little bugger couldn’t have found himself a better home. She is sweet, kind, loving, and just a wonderful human being. Lucky is going to have a big yard to play in, will be allowed inside the house, and has already been promised lots and lots of love. If I described what I wanted to find in a family for Lucky, I would’ve described Tia Pao. So I am thrilled thrilled thrilled. As well as devastated. Of course I’m already super attached to the little puppy, he’s been so much fun to have around. But reality is reality and I can’t take him to LA with me so it’s best for him to find a home here sooner rather than later. He’ll be going to Tia Pao’s house on Saturday, so I have 5 more days with Mr. Lucky. Here he is playing with his favorite Elmo doll:

Now, talking about life. In general, Nathan is doing very very well. As you can see, he is finally making improvements that are carrying over into life, not just therapy! I really can’t describe how it feels to finally watch Nathan gaining new skills. It’s fantastic!

I think that the combination of CME, g-therapy, and his specialized diet is having a very positive effect on his brain. I think that the G and the diet maximize the ability for the CME to “take hold” in Nathan’s brain. I’ve also noticed that there has been a spillover effect into other areas for Nathan. I’ve been talking a little bit about it here – he’s more interested in playing, more vocal, is able to prop sit even though he hasn’t practiced prop sitting in months, improved head control, eating better. If you think about it, babies gain 90% of their development in their early years through motor development. So I think CME is helping him not just in gross motor skills, I think it’s also helping him with fine and oral motor skills, as well as intellectual stimulation.

So life is good..and I sure feel lucky.

Swimming at Stadio Italiano

And here he is going for a swim. He LOVES it.

Woe, The Head…

I’ve noticed that if I allow myself to get overly tired, it’s harder to stay positive. Well a good night’s sleep seems like a childhood memory, it’s been that long since I’ve had one.

While in a funky exhausted mood I started dwelling on “The Head”. This is the big ugly monster that terrorizes me during the day while my thoughts wander. It is the dark ugly cloud in my life. It’s the single most frustrating part of this journey for me.

Sometimes when I look at tiny winy 6 week old babies with their strong straight little heads it makes me want to weep. I saw one of those today and it unhinged me.

The thing is, Nathan’s head control is so darn poor. It seems that no amount of therapy can get The Head to stay where it’s supposed to. I don’t think I’ve ever seen Nathan maintain The Head in correct alignment for more than 2 seconds, ever. I don’t understand it. I’ve seen amazing improvements with his ability to bear weight. He’s even coming along a little bit with his trunk. Some balance has kicked in. But The Head seems untouchable.

I was looking over some CME videos. And I honestly feel that The Head is holding him back. I see videos where he is supporting his weight and even his trunk is up, but the head bobbles and down or back he goes. Forwards, backwards, left, right. Ramon was working on aerials today, and he was able to stay up for a while, but then The Head would bobble forward, the trunk would follow, and we’d end up with a heap on the floor.

But the worst is the wheelchair. The chair itself doesn’t have proper head support. It relies on the child to have minimal head control. So in a 5 min stroll in the chair, I have to fix him about 67 times. Even if I recline him and tilt him back (unless he’s alllll the way back and pretty much laying down). What he does is he constantly lifts The Head forward, but he can’t keep it properly aligned for even a tenth of a second, so then it falls to the side. I fix him, a second later he does it again. I fix him again. The Head bobbles again. It’s the most disheartening dance I’ve ever experienced. If I lean him all the way back, he gets furious because he likes to be upright to observe the world. Oulla, Youseff’s mom, suggested I leave him. She said eventually he will have to find a way to fix himself. I have tried it, but he doesn’t. He just hangs halfway out of his chair like a rag doll, and stays. I would leave him like that, waiting for the day where he magically realigns himself properly, but I can’t handle The Stares. Everyone. Stares. They shoot darts at me, like I’m the worst person in the world for letting my kid hang half out of his chair like that. So I fix him. And the dance begins again.

Let me end this post with a most sincere plea for help. I cannot let The Head win this battle. But I need help. What have you done with your child that has helped to improve their head control? Has anyone heard of any special exercises? Drugs? Torture devices? I’ll try anything. Please, HEEELLLPPPPPP!!!!

(Btw… I hope you guys can pick up when I use sarcasm? I’m not serious about torture devices, really, I mean it )

PS. I’ve just come back from water polo feeling much better, nothing a few good blocks can’t cure :-)

PPS. Add banana and nutella to the mix and you have one happy momma

HBOT testimonial

Eugenia, Mathew’s mom, sent me this video (thanks!!!!):

What a wonderful testimonial for HBOT! This, and hundreds of stories like it, is why I feel that I HAVE to give HBOT in a hard chamber a try. We’ve used a soft chamber, but I haven’t seen improvements from it and I think it’s because the oxygen concentration and the pressure from our chamber is too low. A hard chamber will give him 100% oxygen and much higher pressure which I think he needs due to the severity of his brain injury. I still haven’t ordered the mask as I’m waiting for confirmation from the doctor about what mask I have to order, then I’m hoping Nathan will be in the chamber sometime next week.

Head Control

This is something that I worry about with Nathan. Ramon tells me not to worry – it will come, he says – but worry I do.

I was searching around the web and found these articles:

Music as a feedback mechanism for teaching head control to severely handicapped children: a pilot study.

Sensory feedback for head control in cerebral palsy.

Training of head control in the sitting and semi-prone positions.

I am really intrigued by these ideas! Basically if I can set some switches up on his wheelchair, so if he keeps his head properly aligned he gets a reward – for example, music – but if he lets it fall, he receives negative feedback – this might help him develop better head control!

I’ve been doing something similar lately. I sit him up completely straight in his wheelchair. He likes to lean forward so his head is not held but the wheelchair rests. But then as soon as he leans forward, he lets his head fall to the side – usually the left side. What I do is I will vibrate him back to midline. He will then drop his head again within 10 seconds, and I fix him again. So in a 10 min walk I will fix him at least 100 times. This is annoying to do but today I noticed that he kept his head aligned for about 5 – 10 seconds. So I think there is something to it!

Does anyone have any ideas about how to implement this? Does it even sound like a good idea? Am I completely mistaken that he can learn head control through biofeedback? Would really appreciate some feedback!!!

Rolfing

Today was Nathan’s first Rolfing appointment.

The verdict: INCREDIBLE!

Let me tell you the story of how I took Nathan to his first rolfing appointment. About 8 months ago I started going to a hot yoga studio. There is a table there with a bunch of flyers. I noticed one that said “rolfing” but I had no idea what it was. 4 months later one of my good friends started talking to me about rolfing, she did a 10 session series and was RAVING about it. But genius that I am, I didn’t make the connection between that in the flyer in the yoga studio. 2 months later I noticed the flyer and thought, hmmm, how interesting, I could really use this, as my posture is terrible. But I lost the flyer and that was that. Then about 2 weeks ago I picked up the flyer again and something in my body told me to call that minute. I called and the guy said, sorry, I don’t work with children. I called him back and said, you have to work with my son. He said, ok, I’m willing to try.

So today we went and I have to say WOW. It is the FIRST appointment where Nathan is just happy to be on his back while he is massaged. Usually he is defensive and doesn’t like to be touched and massaged. It took him about 5 minutes but he quickly developed a rapport and a trust for Tom.

I entertained him playing with my keys while Tom worked on him. After a little while, he was paying more attention to the massage than the keys! As Tom worked on his shoulder he started laughing. And soon I noticed that his arms were loooooooooooong and not tight. It was incredible to physically watch the results of the work!

By the end of the session, his arms were long, his neck longer, and his shoulders were pushed back away from his chest. It was incredible. And Nathan was happy the entire time!

I think we have hit the bulls eye and found not just a winner therapy but also an amazing therapist. The guy is a gem. Kind, gentle, spiritual, beautiful energy.

So I am happy to report that we have found one of the last missing pieces of Nathan’s puzzle. Rolfing addresses the structural part. ABR was just not right for us and I think we can replace ABR with rolfing, as it also works on the fascia and connective tissue.

Here is some more info on Rolfing:

Named after its founder, Dr. Ida P. Rolf, Rolfing Structural Integration is a form of bodywork that reorganizes the connective tissues, called fascia, that permeate the entire body.

More than fifty years ago, Dr. Rolf recognized that the body is inherently a system of seamless networks of tissues rather than a collection of separate parts. These connective tissues surround, support and penetrate all of the muscles, bones, nerves and organs. Rolfing works on this web-like complex of connective tissues to release, realign and balance the whole body.

Essentially, the Rolfing process enables the body to regain the natural integrity of its form, thus enhancing postural efficiency and your freedom of movement.

Rolfing Structural Integration has the ability to dramatically alter a person’s posture and structure. Rolfing can potentialy resolve discomfort, release tension and alleviate pain. Rolfing aims to restore flexibility, revitalize your energy and leave you feeling more comfortable in your body.

Athletes, dancers, children, business professionals, and people from all walks of life have benefited from Rolfing. People seek Rolfing as a way to ease pain and chronic stress, and improve performance in their professional and daily activities. It’s estimated that more than 1 million people have received Rolfing work.

Research has demonstrated that Rolfing creates a more efficient use of the muscles, allows the body to conserve energy, and creates more economical and refined patterns of movement. Research also shows that Rolfing significantly reduces chronic stress and changes in the body structure. For example, a study showed that Rolfing significantly reduced the spinal curvature of subjects with lordosis (sway back); it also showed that Rolfing enhances neurological functioning.

I leave you with this video of Nathan playing by himself this morning:

Anat Baniel Method Workshop

Today I went to a workshop with Anat Baniel. I have one word about it: WOW! The woman is a force of nature!

Anat’s method is based on brain plasticity. Her basic premise is that people learn through movement. For a healthy child to learn to roll, he goes through thousands of attempts of tiny, miniscule movements – they twitch their hips, move their arms, lift their bums, move their feets. Thousands of involuntary movements eventually lead to milestones like rolling, sitting, crawling, etc. But to roll the brain has to tell the hips to move, the shoulders, the head, etc.

She had us try out a lot of the movements ourself. I finally understood why it’s so hard for Nathan to move! To simply roll, there has to be control of the pelvis, strength in the back, control of the head, and much more.

She believes that children need to be on their backs. On their backs they have the opportunity to engage in all these tiny movements on their own. On their bellies they are stuck. Now of course this is very different from what we’ve been told with Doman Delacato, but she believes putting kids on their bellies before they can get themselves on their belly is criminal.

She repeated one thing over and over again – If they could they would! If they could be on their bellies they would get there. If they could walk they would walk. If they are not in these positions it’s because the brain doesn’t have enough organization.

She talked a LOT about neurological organization. The brain has to create maps of the body. Think of the USA. We have created state lines, city lines, county lines, etc. We have a map of our world, our country, our city. That’s how we know where to find people and how to get around. The brain has to do the same thing. It has to use the space it contains to create maps of the body, which then have to be organized and create synaptic connections to create movements. If the brain doesn’t have the map for the movement, it cannot be performed.

Through a series of tiny movements, she starts giving the brain the necessary information to create maps, which she then starts organizing through even more movements. Then, with enough data and organization, the child will be able to start moving on his own.

Simple, and incredible.

Her approach is also very spiritual and holistic. She believes that the parent and therapist has to believe in the potential of the child. There has to be enthusiasm for the work and even the most miniscule changes. She gave many stories of how she had to work with the child emotionally before she could get the child to activate physical pathways. She talked about attention, intention, and belief. This wasn’t a major focus of her work but I heard it in the way she described how she worked with patients. She said that the child has to be open and engaged for the brain to learn. She doesn’t like making children cry and is very respectful of their space and emotions.

In short, the woman is amazing and the method sounds ASTOUNDING! We tried it in San Diego but it didn’t go so well primarily due to bad conditions – Nathan wasn’t sleeping, we were too far away from the therapist’s office, etc.

I can’t wait to take Nathan to her when we return from Chile. I think the combo of Medek and ABM will be AMAZING! Both of these are brain therapies and both were created to help the brain organize itself and create neural pathways. Now many of the premises are different – Anat doesn’t like putting kids in positions they are not ready to be in, while that is the basis of Ramon’s work – but the key is that they both found different, effective ways to work with the brain.

I was astounded by what I felt whe I did the exercises. I literally could feel my brain tingling as it was stimulated in different ways. When I left the course I felt full of energy, more balanced, and my body felt settled and more synchronized. I think her work is very powerful!

It was a long day but it was amazing. I feel like I am now being given all of these incredible tools that I can use to help Nathan. In fact these tools can help anyone! I’m planning on continuing to do some of the exercises myself. And lucky Max will experience them too :-)

Aquatic therapy

Nathan and I have been slowly coming up with our own version of aquatic therapy. He LOVES being in the water! We’ve been getting in pretty much every day since we returned from England. I think it’s his favorite activity of the day.

I quickly realized that I could get him to work on his head and trunk control, as well as standing and kicking while in the water. So I do a version of MEDEK in the water. He has so much fun in the pool he doesn’t even complain!

I am posting a few videos so you can see what we are doing.

The most important part is that he LOVES looking for treasure. I hide toys in the filter, and he has to reach in to pull out the toys. The moment we get in, he starts looking towards the pool and wanting to swim over. As soon as I say “Let’s look for treasure” he gets so excited and starts kicking! Then once we get to the “treasure” I make him do exercises. Then we swim to the other side of the pool where he does another round of exercises and then he gets to swim to the waterfall. He loves putting his hands on the rock and having the water flow over his hands. I’m also using that for head control – if he leans forwards, he bumps his head, so he is learning not to let his head fall forwards.

In general, this is the most fun Nathan’s had in therapy EVER!

A most enlightening conversation

Yesterday I spent a couple of hours on the phone with a lady name Kirshner who runs one of the brain injury Yahoo groups: BIA4KIDS. This is one of my favorite groups as most of the parents are very proactive about helping their kids. She shared with me a great deal of information and I thought I would share it here.

The original topic was whether she thought Nathan would be a suitable candidate to receive stem cells in China. Her opinion was NO. She explained that for stem cells to work in the brain they have to cross the blood brain barrier. Once a child is 3 years old this barrier is thick and the stem cells may not make it through the barrier and into the brain. The way that Beike gets around this is by giving the kids a shot of stem cells through lumbar puncture – this guarantees that the cells go right to the brain. Nathan, however, is not a candidate for a lumbar puncture because he has a shunt. There is a risk of infection if they do a lumbar puncture on kids with shunts as the infection could go right to their brains. She believed Nathan could have gains with just the IV injection of stem cells but she believed the gains would be minimal and there wouldn’t be sufficient ROI. Now Kirshner is a HUGE proponent of stem cells so for her to say she doesn’t recommend stem cells for Nathan is something to take notice.

We talked about Nathan’s MRI. She was amazed at how well he does given how affected his brain is. She sees signs of very severe damage and told me how lucky we are that he can function as well as he does. She believes that part of the reason for this is that he does have at least some brain tissue in each of the lobes and there is a little bit of communication between all four lobes which allows him to function.

We talked about all of the different alternative modalities and she believed that I was on the right track by choosing several different paths. However, like everyone’s been saying, she believes it’s important to stick to each technique for a while to give it a chance to function. She told me about Gene Lewis and said he’s the best sensory therapist available. I’ve contacted him and made an appointment. He is trained in the Doman-Delacato approach but has integrated many other healing modalities. She believes this is very important for Nathan because he needs therapies that emphasize communication between the hemispheres and patterning is a great way to do this. He seems to also use other healing modalities so I am willing to talk to him to see what he thinks!

She also emphasized the importance of HBOT. She believes that every child with a brain injury should get regular HBOT treatments. We have a chamber but haven’t been using it, which she reprimanded me for. I have always had doubts about Hbot because I’ve never understood the difference between malformation and brain injury, and I wondered if maybe Nathan would gain limited benefit from HBOT since he has a malformation, not lack of oxygen. She explained that regardless of what the brain looks like, any and every brain would benefit from regular hbot treatments because it improves oxygenation to the brain at the cellular level. So my goal is to get our chamber back up and running so we can start diving again.

She recommended the use of theratogs to give him a little bit more stability and better alignment. We have theratogs but stopped using them because we started Medek. Medek is all about removing support, and theratogs are all about giving support, so there seems to be a conflict there. I will be writing to Ramon to ask him about this.

Finally, she reccommended the following supplements: Vinpocetine and Magnesium calcium. She explained that vinpocetine and magnesium calcium in high concentrations has a vasodialation effect that also helps for kids with brain injuries. I don’t really understand this yet but figured it was worth exploring! Coincidentally, I have an appointment with Dr. Kenny tomorrow so I will ask her about this.

It was great speaking with someone who has walked this path ahead of me and who has great knowledge and understanding about the brain injury world. I’m going to check out the things she recommended and hopefully we will be able to knit everything seamlessly into a pleasant, gentle rhythm for Nathan.

Current Rehabilitation Approach

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

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

Overview

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

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

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

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

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

Diet

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

Supplements

This is his current list of supplements:

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

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

Chinese Herbs

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

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

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

Homeopathic

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

Chiropractic / Biochemist

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

Osteopath

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

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

Epsom / Bath Salts

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

Rhythm / Education

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

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

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

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

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

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

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

Physical Therapy

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

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

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

Speech Therapy

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

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

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

Occupational Therapy

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

Other Therapies

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

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

Equipment

Currently, we are using the following pieces of equipment:

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

Western Doctors

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

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

Western Medicines

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

Things we wish to incorporate in the future

Stem cells in China if/when funds permit.

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

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

Step of Mind

A mom in one of  the Yahoo groups I read posted this video:

The website for the Israeli group working on this project is: Step of Mind

I love hearing about projects like this one!

G-therapy

I’ve had a stream of people asking me about G-therapy so I figured I’d dedicate my first post back home to this topic.

G-therapy was created by a homeopathic doctor in India specifically to treat conditions of the Central Nervous System.  Here’s an excerpt from Hulet Smith’s blog, who has worked with Dr. Oswal:

G-therapy is a homeopathic supplement made from a unique combination of herbals extracts in potentiated (homeopathic) form. The extracts are administered in small tablets known as “biochemical tissue salts” and are also referred to as “biochemic cell salts.”

Dr. Oswal is the Founder and Director of the Center for Life Sciences, Health, & Medicine in Pune, India. He works collaboratively with his daughter [Dr. Pooja Upasani] and son in law [Dr. Shreerang Upasani], both have bachelor’s degrees in Homoeopathic Medicine from Pune University.  Dr. Oswal is an Integrated Medical Graduate BAM&S from the University of Pune.

How Does It Work?
According to Dr. Oswal, “G-Therapy medication was developed over 25 years through research in Ayurveda and Homeopathy and when taken stimulates neurotransmitters and acts as a nerve growth factor. The body salts bring about the necessary changes in neurotransmission while the herbal extracts act as a catalyst”. The degree of improvements, however, depends upon the brain damage and patient response. Explains Dr. Oswal, “A unique combination of herbal extracts in potentised form and biochemical tissue salts are prescribed all together or, in certain cases, as individual components.”

Who can it help?

Dr. Oswal is the first to acknowledge that no one understands the exact mechanisms behind G-Therapy. “It is seen that a wide range of pathologies and physical and cognitive disorders are helped by G-therapy,” he noted. G-Therapy has been implemented in patients with a variety of diagnoses that include all types of cerebral palsy, congenital brain anomalies, hydrocephalus, ADHD, kernicterus, metabolic disorders with neurological complications, strokes, learning disabilities, intellectual disabilities, Down syndrome, Asperger’s syndrome, autism spectrum disorder, and many other forms of developmental disabilities.

Dr. Oswal explained that the degree of improvement in any given case cannot be predicted, and depends in part on the degree of initial disability. “G-therapy does not claim that it can make every spastic walk and the mentally retarded to achieve normal IQ,” he said. “It should also be noted that there is a definite number of patients who fail to respond positively to G-therapy. [However] G-therapy has shown persistent results…and it is up to the developed countries with modern amenities and electrophysiological studies available, to think, to test, and to verify the efficacy of G-therapy, so it can be made available to all the needy individuals.”

If you want to learn more, you can also visit Dr. Oswal’s site:  G-therapy.org

As for our experience with G-therapy.  We started giving it to Nathan about 2 months ago.  I noticed that within 2 days his muscle tone changed.  It seemed to normalize a little bit.  His extremities, which tend to be spastic, loosened up and he seemed less tight.   This is one thing I can definitely attribute to the Gtherapy.

Shortly after we started him on G we also started giving him some Chinese teas and a special Chinese herbal treatment, so unfortunately I cannot say what’s what.

But shortly after we started G and the Chinese treatment, we found Medek and were amazed at Nathan’s positive response to it.  Nathan’s never responded so well or quickly to any treatment.  I think this is in large part to Medek itself, but I also think that the G and possibly the Chinese treatment contributed to allowing his brain to create new neural pathways.  The changes that we saw with Medek were so fast that I would be amazed if it wasn’t a combination of these things.  You could almost see the new pathways being created.

He continues to gain strenght and improve with his Medek exercises.

Also, he has doing very well cognitively.  He now has a few words.  He seems to be trying to communicate more effectively – instead of whining when he wants something, he looks at us and trying to verbalize or use his eyes to tell us what he wants.  All of his therapists have been commenting that this is the best he’s ever been since they’ve known him – in all areas – fine motor, gross motor, speech, cognition.

Unfortunately I cannot isolate any one thing.  But my mother’s intuition tells me that G-therapy has been and will continue to be a key factor in Nathan’s growth and development.  In my heart and gut I know G-therapy is helping.

I’ve always believed that Nathan’s rehabilitation has to come both from the inside and the outside.  From the inside we are healing him with diet, supplements, G-therapy, and the Chinese teas.  From the outside, we continue with Medek and a little bit of ABR and other things like swim class, OT, ST, DT, and preschool classes.  We think that the “outside” therapies cannot work effectively unless the internal conditions are right, which is why we think the “inside” therapies are also important.

If you are interested in G-therapy for your child, the best way is to join the Gtherapy Yahoo group.  Then post that you are interested.  Unfortunately, the doctor will not mail G-therapy individually.  Parents on the group wait for one family to volunteer to go to India, then that family brings it back to whoever is interested.

The cost of G-therapy has changed a couple of times so it’s best to inquire about it directly with Dr. Oswal or ask on the Yahoo group.

Let me know if you have any more questions, I’ll be happy to do my best to answer!

Dystonia

One of Nathan’s problems is that he has dystonia.  In a nutshell, what it means is that whatever he wants to do when it comes to movement, his body does the exact opossite.  So if he wants to reach out to grab a toy, instead his arm retracts closer to his body and becomes even tighter.  The more he consciously tries to open his hands, the tighter he closes them, so you almost can’t pry them open.  If he wants to put his hands on the floor when he is in crawling position, he ends up with his arms tight against his body.

At the CP conference in St. Louis they talked about a drug called Sinemet, which is used to treat Dystonia.  But as the list of side effects is very long, there’s no way I’d consider trying it.

So today we saw Dr. Kenny and I asker her if there was anything we could do to naturally supplement this drug.  She’s agreed to see what we can do to increase his production of L.Dopa, which his body then transforms into Dopamine (which is what’s lacking in dystonia).  She gave him a B3 supplement (the same one I’m on!) to see if that’ll help him create more dopamine without needing medication.

On a wonderful note, today Nathan “callibrated” at 999!  That means he is pretty much perfectly healthy!  No viruses, infections, fungi, imbalances, emotional disturbances… he is feeling physically and emotionally strong!  It was exciting to hear.

Tomorrow Nathan starts a 2 week suit therapy intensive at Napa Center.   We are going to teach them how to do his Medek exercises so they can do them while at the Center.  I am excited about this because I think he will do Medek much better in a room full of people and other kids.  Then they will put him in the suit and work with him for another little while.  Then we’ll do the 2nd Medek session at home.

I am excited to see how this works for Nathan.  He enjoys being at Napa tremendously because of all the other kids and people.  He works hard when he’s there.  So we figured we’d put him in that setting to see if we can get him to work even harder.   I’ll take some pictures tommorrow and post – I promise!

So that’s al for today… Now back to Outlander :-)

A Bone

The closing sentence of my meltdown post earlier this week was, “Why won’t anyone throw us a bone”. Well a couple of mornings later a huge bone fell on top of us. We got a call from the Canadian Medek Centre verifying our appointments for the following week. Huh? What?

A couple of months ago I had made an appointment for a week of intensive Medek therapy. Then, after we did the muscle testing with the list of therapies, and after our fiasco in San Diego, and after our paradigm shift, we figured we’d better wait to decide if we were really going to go or not. I told the Medek Centre that I’d get back to them to confirm the appointment. Well I’ve been so overwhelmed that I just never got around to confirming or cancelling. Part of me assumed they had canceled our appointments. I found out otherwise when they called us on Wednesday. Since Owen is the one making decisions now, I told him what was going on and asked him what he wanted me to do. Cancel? Go? Honestly, I just relayed the information, with no energy to have an opinion either way. To my surprise he said, let’s go.

So on Thursday I got in touch with the family who told us about the Canadian Medek Centre, whose phone number I’d tried to find many times but couldn’t, and magically appeared on that day while I was cleaning the office closet. They invited us to stay with them. I was able to get super cheap flights. Typically we use miles to fly but this was too last minute. But the flights were unbelievably inexpensive. Everything fell into place.

I’m a big believer in synchronicities and this situation seems filled with them.

So tomorrow we part again to another journey! I thought I would be weary of leaving again and trying yet something else. But I’m actually excited. This was almost the last stone left unturned and I’m glad we’re going to turn it (the last one is stem cells in China). We are open and hopeful and happy to have a chance to get away as a family!

Tomorrow I won’t be able to post but I’ll do my best to post after our first appointment on Sunday.

Thank you for visiting and we hope you have a lovely weekend!

Blue Man

From 4-23-09

This is Nathan in his theratogs. We got an incredible deal for these through Special Child Exchange and Nathan has been using them for a couple of weeks. They are GREAT! They give Nathan a little bit of extra feedback so he tries to keep his body in better posture and alignment. He doesn’t seem to mind wearing them at all. It only takes us a copule of minutes to put them on him and then he just keeps them on all day.

On another note, Nathan’s doctor’s office called today to say that my instinct was right – Nathan had an UTI. Recall how the doctor yelled at Owen and Mary, blaming us for Nathan’s discomfort because we held back the reflux meds? Well I insisted that she check for UTI and she said, no way, it’s just the reflux. Fortunately she did listen and took a urine sample.

Today the call came that yes, he did in fact have a UTI, and could we please pick up some antibiotic for him. And how, you may wonder, did I figure this out? I thank the lovely House. Mary and I wrote all of his symptoms on a dry erase board and then I brainstormed and searched until I came about a diagnosis. Thank you House. I don’t write this to brag, only because I think it’s amazing that a mother’s instinct is stronger than 15 years of medical training.

Hopefully the antibiotics will stop the vomiting (yes he’s still vomiting), and hopefully we didn’t mess him up by putting him on Prevacid again uneccesarily. I will say he’s been in much better humor since he’s been back on prevacid so I’m assuming the reflux wasn’t horribly serious but was causing him discomfort and irritability.

By the way, Owen had Nathan today, and I went downstairs wondering why he wasn’t in bed yet, and found him with throw up all over both of them, and Owen playing away at his World of Warcraft Raid. Nathan looked at me with big eyes, and if he could speak I’m sure he would be saying, mommy save me please! The look of delight in his face when I picked him up and put him in the bath was indescribably. Lesson: May nothing get in the way of a man and his WOW raids.

Tommorrow I’ll share some exciting news :-) In the meantime, good night!