A little piece of heaven

Gwen, one of my favorite people in the world, wrote this post, and I couldn’t agree more:

Size Matters

* We took the kids to watch Imagination Movers in concert this weekend – they LOVED it! Imagination Movers is Nathan’s current favorite show, trumping Phineas and Ferb. He almost passed out with joy when he saw them on the stage…and then Rich, the main guy, went up to him while we were seated and said hi and said his name on the microphone! Nathan was stoked!

* Nathan’s health is improving. Last week he had a weird fever that only lasted a few hours, and then he quickly returned to normal. His homeopath believes this is part of his healing process, as he had started a new remedy that day and it is normal for a similar reaction to manifest. She believes that over time, this remedy will help him significantly.

* Today I had an appointment with Nathan’s homeopath who is also a western doctor. She diagnosed me with Myalgic Encephalomyelitis, which is similar to Chronic Fatigue Sindrome, but is caused by a virus. The good thing is that at least I have a label for the symptoms I’ve been experiencing. The bad thing is that, well, I have it. She gave me a homeopathic remedy and a couple of supplements that she believes will help reduce they symptoms, but unfortunately at this time they have no known way of eliminating the virus so it’s just a matter of managing symptoms.

* Today I am 12 weeks pregnant! My current favorite name is Noah. Owen isn’t crazy about the name, but until/unless he can propose a different name, Noah remains the current favorite!

* We started a new thing with Nathan – Whole Body Vibration. But I will write a separate post about this!

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.