I believe

A couple of weeks ago I wrote a post called “To believe or not to believe – that is the question“. And today I have the answer – I BELIEVE!

We saw Dr. Kenny again today. As usual, I was blown away.

I started the appointment by telling her that I had issues after our last appointment. I explained to her that for 2.5 years I have believed that “more is better” and worked my butt off to offer Nathan “more”. Then she waltzes in and turns everything upside down for me. I was honest and told her I want to believe in the way she works, but it is very very hard. She said, “Okay, thank you for telling me how you feel, we’ll test Nathan again”.

We brought EVERYTHING – all of our supplements & lists of questions. She must’ve tested about 50 items/questions. And guess what – the things he tested for were VERY consistent! I could see the continuity in the results. In fact, I even accidentally put in 2 bottles of the same thing, and both times the answer was the same, which gave me even more faith in the process. His list of supplements is very very similar: B6, fig tree, briar rose, cod liver oil, manuka honey, zinc, gastrex, min-chex, drenamin, multi-pollen, garlic, lighten up, rock spring oil, fireweed oil, and VSL#3. There were a couple of things added, a couple of things he doesn’t need any more, but most of it seems to be the same.

Then we tested the therapy list again. Here was the list:

• HBOT in Sacramento
• HBOT in anaheim
• Tomatis Therapy at NAPA Center
• Intensive therapy at NAPA center
• Dr. Steve Nelson Asyra
• Dr. Steve Nelson Aura
• Osteopathy with Dr. Fryman
• Osteopathy with Dr. Hagobian
• Osteopathy with doctor at OCFC
• Craniosacral with Brenda
• Feldenkrais with Irina
• Feldenkrais with Krist in SD
• Anat Baneil Method with practitioners in NorCal
• Umbilical Cord Stem Cells in China
• Bone Marrow stem cells in Germany
• Dr. West DAN protocol
• Nathan’s DAN doctor
• Dr. Kim treatment
• Reike by mom
• G-therapy
• ABR manual
• ABR machine
• AIAHP program
• Augmentative Communication Device
• Kidwalk/Hart Walker – practice walking
• Vital Stim
• Conductive education
• Mhbot for naps
• Biofeedback with Dr. McDonald
• Yoga for the Special Child with Catherine
• Hippotherapy
• Gymboree music class
• Aquatic therapy with Bright Star
• Pool therapy at swim 4 life
• Bodytalk with Lauren
• BodyTalk with Tamar
• BodyTalk with mom
• Medek in Chile with Ramon
• Medek in Canada with Ester
• Kangen Water alkaline
• Mud packing for chelation

These are the things that he tested for:

* Tomatis at Napa Center
* Osteopathy with doctors at the Osteopathic Center for Children in San Diego
* Feldenkrais / Anat Baniel Method with Kristi in San Diego
* Umbilical cord stem cells in China
* Dr. West DAN protocol
* G-therapy
* ABR machine
* Yoga for the Special Child with Catherine
* Pool therapy
* BodyTalk with Tamar
* BodyTalk with mom (I have to be trained for it)
* Medek in Chile with Ramon
* Kangen Water

Now, this is a VERY different list from the last one, where he only picked a couple of things. I asked Dr. Kenny about that, and she explained to me that it had to do with timing and the changes in his body. Durinig our last visit with Dr. Kenny, Nathan’s overall health was about 680 in a scale of 1-1000 (I think). Today he was at 997. So now that he is SO MUCH stronger and healthier and his body is functioning at its optimum capacity, he can assimilate different things.

Now, notice the trend in what his body wants – therapies that DO NOT impede on his daily life. He doesnt want anything that keeps him tied to the house hours at a time. He picked therapies that we GO TO, we do for a few days or weeks, and then we go back to a normal routine.

Why is this significant – because it is absolutly positively and completely AWESOME! It means we are FREEEEEEEEE! It means we can use our days to have fun! To do what other 2 years do! Play, read books, go to the park, go swimming, exploring.

For the past few months we’ve been tied to the house for one reason or another. First it was all the therapies we were doing. Then it was the Reach/AIAHP program. Then it was ABR. Now, he will still do therapies, but they are all FUN therapies, and most of them are enjoyable. He will use the ABR machine at nights and at different times throughout the day, like when he’s eating. We will give him G-therapy as a supplement. Once I am trained in BodyTalk, I will do this every day for him which shouldn’t take very long. But it will also free me up to do fun things with him like Reike, massages, play on the computer, play with toys, etc.

So we will be doing something like this. We go to San Diego and receive treatments for Anat Baniel Method as well as Osteopathy. Each of these are no more than 2 hours / day. The rest of the time, we can go for walks, we can go to the beach, we can go to the San Diego Zoo, legoland, other fun things. Then we come home and resume his regular routine, which will look something like this:

Mondays – preschool and yoga
Tuesdays – hippotherapy
Wednesday – pool therapy
Thursday – preschool and spech therapy
Friday – yoga and developmental therapy
Sat – pool therapy
Sun – OFF

(schedule not actual, just an example)

How delightful is this? All of these are fun things that he absolutely loves & enjoys. And then we take time off to go to San Diego, Chile, and China.

I was a bit surprised that he didn’t test for things like Hippotherapy and Gymboree again. But I think the reason for that is because they may not be of major assistance in his cognitive or physical development (which was the “question” that we asked of him), but he loves and enjoys them so I will keep them on.

And I have to admit – I feel LIBERATED. I didn’t realize how constrained I have felt all this time until I was released from the chains. I can’t tell you how many times I have been dying to take him with me to the park or hiking or other fun places, but I don’t do it because I feel it is more important for him to get his ABR and there are only so many hours in the day.

I know some of you may be asking – What about the ABR! I am asking myself that too. But I am ready to believe in the wisdom of Nathan’s soul and body and I am ready and willing to let him guide me. He did not test for it so it may not be the right thing for him at this time. And as it consumes so many hours, it is not something I want to maintain if he is not able or willing to assimilate it.

Which leads me to the other AMAZING gift I was given today.

After we went through this list, Dr. Kenny said:

All of these programs will support Nathan and help him maximize his development in this life and body. But please remember, he is perfect. He is perfect now. He will always be perfect. The most powerful miracle is that he is alive. His life is a gift. He is perfect because he makes everyone around him become better people. You are working hard to become a better person for him. Look at how much you have changed. Look at how hard you work because he deserves the best of you. You have given me a gift by bringing him to me. This is the magic that touches everyone around him. He’s a catalyst for all of us to become better people.

So today I understand. Nathan is not here to be helped. Nathan is here to help US. Nathan is here to give everyone who knows him an opportunity, a gift. And I, as his mother, am the luckiest recipient of all.

So today I made my decision to believe. To have faith. To have faith that Nathan’s spirit brought Dr. Kenny into our lives because we need her help and guidance. I have made the decision to have faith in her treatment and in her protocols. I have made the decision to have faith in Nathan’s innate strength and wisdom.

I know some of you may feel like you’re watching me play ping pong with myself. Back and forth back and forth, do this, do that, maybe this, maybe that, let’s go here, let’s go there. But throughout this whole process I keep praying and praying and praying to be guided, to find peace, to find balance. And I feel that with every “loop” I complete I gain more strength, wisdom and experience.

Today I know we are on the right path. Today I know we are being helped and guided by wonderful, wise people. Today I know that the most powerful guide in this journey is Nathan himself. Which is something that I had somehow, regretfully, forgotten.

In my meditation yesterday, I kept asking Nathan, in my mind, “what do you need?” “how can I best serve you?” And I kept hearing in my heart, “mommy, I am okay”.

So this valley that I walk on today is increasingly luscious and beautiful. The more I melt away my grasping and ego, and allow myself to be helped and guided, the more beauty and balance I find. But please remember, this is a journey, so don’t be surprised when in a few days or in a few weeks I find myself lost again in a dark cave and posting about doubts or even more therapies that I want to explore 🙂

A couple more things happened at Dr. Kenny’s office today. While we waited to see her, we went to the little play area and I showed Nathan a bunch of toys. He indicated that he wanted to play wtih a car. I sat him cross legged and got him to support his body with his left hand so he could use his right hand to play (prop sitting). And he grabbed that car and started moving it back and forth and playing with it! It was SO cool to watch! Now why is this significant? Until today, Nathan has never really shown an interest in playing with cars or with toys. Today I could feel him being interested and engaged and wanting to just play like any other child. It’s almost like he’s waking up to a world of exploration and discovery. Before he was too “spaced out” to be captivated by these things. Today he’s interested!

I believe that Tomatis has a LOT to do with this interest (supported by a stronger, healthier body), as Tomatis deals with sensory integration and with being more grounded and involved in the environment. I will write more about Tomatis soon but for now I will say I am THRILLED at how much this program is helping Nathan.

Finally, during our appointment with Dr. Kenny, she chided us a little bit about the use of so many supplements. She told me that generally she just doesnt’ reccommend using so many supplements, because the body wants to receive all of those things in FOOD (yes Rich I’m thinking of what you said). She explained that food is supposed to provide the body with all of the vitamins, minerals and nutrients that it needs in the most complete way that the body can assimilate. Supplements usually aren’t complete, and to use them, the body has to “take” from other sources. So the “homework” that she gave us was to really focus on his diet and on preparing healthy medicinal meals so he can get everything he needs from his food. I told her that we are well on our way, thanks to our new menu. I thought it was important to share this because until very recently, I didn’t see/understand the connection between nutrition and developmental function. But as I have watched Nathan blossom under the guidance of the wonderful Dr. Kenny, I am seeing what a strong connection there is between being happy and “present” and able to develop, and the quality of the foods we eat. She explained that many of the supplements that Nathan tested for, especially all the “standard process” ones are considered “foods” more than they are supplements, so if we take those out, we’re only giving him a couple of things that are actual supplements – zinc, cod liver oil, vsl#3, and multi-pollen.

I’m sorry if I sound like a broken record. But I guess I didn’t understand until now how incredibly important diet and nutrition is for brain injured kids. I think our kids are more vulnerable that most to bad diets because they have compromised central nervous systems to beging with – so it is more important for them than for other kids for us moms to get the nutrition part right.

After Dr. Kenny we went to NapaCenter for Nathan’s Tomatis and as usual he was calm and happy and playful during the therapy.

Afterwards we went to the Northridge convention again and I took Nathan so he could try the Dynavox EyeMax. IT WAS SO COOL! We held Nathan in front of the screen and in a matter of minutes it had read his retina and calibrated the screen to his eyes. Then we played a few games with him where he got to identify objects, animals, and to play other cool games. I was amazed by the things he knows! He picked out the elephant, dog, bird, fish, he understood when we asked him to go back to the previous screen, he understood that another screen had things to eat and he asked for a donut.

So we are on our way to communication! I think this device will open a whole new realm of possibilities for Nathan. He will be able to tell us what he thinks, what he wants, what he needs, how he feels – all simply by using his eyes.

We also walked around the conference and saw some really cool, neat things – including some awesome switches and software. I’ll write more about these as I start using some of the ideas.

Finally, we went to the Prentke Romich booth and talked to them about their Eco14, which also has built in eye tracking. They use a different language called MinSpeak. It sounds interesting but I am not so sure that this is the route we want to go. The Dynavox seems so much simpler and straightforward. But what’s cool as that we will be able to do 30 day trials of both devices so we can see which one works best for Nathan.

While we were at the booth, a lady with CP who was in a power wheelchair and had a communication device came up to talk to us. I have to admit when I first saw her I didn’t think she could understand what we were saying. But then the representative from Prentke Romich asked her a question and in a few seconds she had typed out a full sentence into her device – “Do not underestimate his capacity to learn”. I was BLOWN AWAY. We stayed and talked to her for a while and she told us to give him the opportunity to learn, that the more and the earlier we teach him, the better. She asked us to start reading to him and to make him identify the pictures in the books so he could correlate the words with the concept. Her message was that even if it seems that he can’t understand everything and even if we are not sure if he will be able to understand a new language like MinSpeak, that we should give him the chance to learn, and he will surprise us. And she said, the earlier you start working with him, the better. I couldn’t agree more.

I was blown away and inspired by the conversation!

We have an appointment on Tuesday for his assesment for the Dynavox device, and shortly after he will be able to start a 30 day trial. On April 6th we have an appointment with Cindy Cottier , the lady who “wrote the book” on augmentative communication. From her we will get more guidance about which of the two devices would be best for Nathan, as well as a strategy to teach him how to use them. Apparently, once we get all the letters in, funding shouldn’t take longer than 2 months! Can you imagine! In 2 months, Nathan may have his own communication system, enabling him to tell us things like “I want to play” “I am thirsty” “I want pancakes for breakfast”.

Today, I believe.