Medek!

I wanted to check in and let everyone know that we are doing great! Before I chat about Medek I thought I’d start by sharing a little bit about how we ended up here in Toronto.

Back in January, I got an email from a kind lady named Julia who has a granddaughter with holoprosencephaly – the beautiful Lourdes. She told me a little bit about her granddaughter and told me how well she is doing, and about a miracle therapy called Medek. She told me that they attributed the fact that Lourdes walks independently completely to Medek. I thought – amazing! So we corresponded back and forth. She sent me a picture of her granddaughter standing up and smiling and I was just entranced. I kept her picture in a folder on my desktop and looked at it often as a means for hope.

I contacted the Canadian Medek Centre, which is where her granddaughter went. I got an email back from them, but then I didn’t do anything about it – I got busy and stressed and just didn’t follow through. Plus we were doing ABR and I didn’t want to stop and start yet another therapy.

About 6 weeks later I got another email from Ester, the lady from the Canadian Medek Centre, asking me if I wanted to talk Lourdes’ mom, January. So January and I got in touch and I was amazed at what I heard about Lourdes. She is doing incredible, miraculous things! Later on I hope to write a whole post about Lourdes so I won’t say much about her now. Anyways, the key thing was that January told me that Lourdes would definitely NOT be walking or doing the things she’s doing if it wasn’t for Ester.

So back in February I called Ester and said, okay, book us – when’s the soonest we can go see you. The soonest was this week. So she booked the appointments and that was that.

Then we started seeing Dr. Kenny and started using muscle testing to test for therapies. The first time we did it, Nathan didn’t test for Medek. I thought, oh no. Then the second time we did it, he did test for Medek – but I had included the Medek Centre in Chile and that’s what was indicated. So then I got confused again. My heart and intuition was telling me to go to Canada, but the results from the muscle testing were different. Then we tested one last time and Medek wasn’t one of the choices. So I thought – what now? What to believe? After that third one though I realized that perhaps muscle testing just wasn’t the best way to make these types of decisions. So while all of this is happening I wrote to Ester and told her I wasn’t sure if we’d come, that I would get back to her to confirm. But then, with all my indecision and confusion, I just didn’t write back at all.

In my previous post I wrote about how we finally got here – it was all incredibly last minute.

The key is, that this is the very first time and the very first therapy that we have encountered that has gotten a child with Nathan’s same diagnosis – holoprosencephaly – mobile. I’ve heard of various therapies working for kids with various diagnosis – but none for a kid with HPE. Lourdes’ success with Medek has been mind blowing. Plus my gut kept telling me to go for it.

So fast forward to now. We had an easy flight and got here without any issues. We were met at the airport by Julia, Lourdes’ grandma, who offered us a place to stay. They drove us back to their house and we’ll be staying with them this week. They are the kindest, most amazing family and we have just been blown out of the ground with their kindness and support. They even let us borrow one of their cars so we could get to and from Medek.

From 4-27-09

We went to our first appointment yesterday. Ester first did an assessment and I could tell in her face that it really didn’t go well. Nathan got 0’s in almost everything. Her brow was furrowed and I was like, oh oh, she’s not going to take him on. Then she started trying out some of the exercises. To all of our surprises, he did okay with them! He screamed as if he was being beaten and tortured, but he did them. I filmed a few of these exercises and will show them below.

Now about the screaming. January warmed me about it, so I was well prepared. Lourdes screamed bloody murder for the entire first year that she did Medek. But look where she is now. So I was prepared and it didn’t destroy me how I thought it would. Plus the main thing was that the minute we left Ester’s office, he was perfectly fine and happy. Which told me, it couldn’t have been that bad. The 2nd appointment he screamed but got through it.

The last appointment today, Lourdes came to watch Nathan and we turned on Elmo on the TV and guess what – he did everything without crying! He complained a bit during the really hard ones but mostly, he got through them. Unfortunately I forgot my camera today so I didn’t film him – doh!

The key is – Ester thinks she can help him! She said that she can’t help 1 out of 4 kids, and Nathan is right on the cusp, but she does think she can help him.

She told us that his trunk is very very very weak – it’s almost like he doesn’t know it exists and doesn’t use it at all. That’s why the head is so weak – the head goes with the trunk, and since the trunk is so weak, there’s no chance with the head. She told me, with absolute certainty, that head control isn’t a problem – that it will come as his trunk gets stronger. Can you believe that! And the thing is – she is the first person whom I actually believe who has said something like this. The key is that we will have to do these exercises with him at home every single day of the year, twice a day. It will probably take us at least 2 hours. But if we do them, the results will come.

What’s really amazing is that everything has felt so gentle, so good, so “meant to be”. Our attitudes are different to. We are not looking ahead or asking for results. We are just willing to do our best and see how it goes. The therapy makes sense. Everything Ester says and does makes so much sense to me. So if it works, great! If it doesn’t, once again, we tried and did our best.

I have to admit, with everything we’ve seen and done, this is the very first time where I feel like – yes, this can work. This can give him the strength that he’s lacking. One reason we’ve never really “stuck” to anything is because none of it really made a lot of sense to me. Something or other just didn’t work for us, for one reason or another. So far, this one seems to “fit”.

From 4-27-09

Anyways, as always, my intention was to write a quick post and I ended up writing a book – sorry! Below are some videos so you can see what I’m talking about.

PLEASE TURN OFF YOUR SPEAKERS. The screams will break your heart. Rest assured that he wasn’t hurt and the minute the appointment ended he was happy and squeaky and smiling. The key is – notice how weak he is, but notice how he has the instinct to pull up against gravity, even if it takes him some time.

This is Sunday after we got home from Medek, and the gorgeous little girl is Lourdes:

From 4-27-09

Comments

  1. http://iamamommytoo says

    Hi Marcela,
    I am a mommy of two boys… You don’t know me, but I have heard about Nathan from Farnaz. I used to work with her and my first boy is her son’s friend. Anyways… I was just checking Nathan’s blog (or your blog…) the other day and my heart was saddened to read what you and your family is going through. I am amazed by your commitment in giving the best for Nathan. I found myself rooting for you (quietly and unknown to you…). I am burdened to make myself known and make the cheering known to you! You are amazing! I am glad that you are able to participate in MEDEK therapy. I will be praying for you and your family!

    take care,
    dina

  2. o.k. – this looks and sounds good.
    You really sound like you believe in this. (unlike ABR).
    I could just never ‘get on board’ with ABR because I’m not a believer in passive exercise…. however, I am very interested in Medek. Nathan looks like HE is really working!! Please tell me more!
    Actually, call me when you have a chance (hee-hee)!!! :0)
    Love, Hugs, and Peaceful Moments,
    Whitney

  3. Marcela,
    o.k. – this looks and sounds good.
    You really sound like you believe in this. (unlike ABR).
    I could just never ‘get on board’ with ABR because I’m not a believer in passive exercise…. however, I am very interested in Medek. Nathan looks like HE is really working!! Please tell me more!
    Actually, call me when you have a chance (hee-hee)!!! :0)
    Love, Hugs, and Peaceful Moments,
    Whitney

  4. http://Mary says

    OMG! me tiene en llanto, im so proud of him! he did fantastic! i miss him…. give him a high5, a big hug and sing him the little mermaid song 🙂

  5. Wow! The videos (I did turn off my sound!) were amazing. What strength he was showing in the exercises – it seems like a lot more than the other videos I’ve viewed on your blog.

    I did turn the sound on for the video after the class and I have to say that Nathan seems so much aware of what you are saying and communicating. I love how he perked up at the chai latte comment. So cute 🙂 A much deserved treat for a really hard workout.

    I’ve been looking for a bit of a treat for Emma as she works so hard! but doesn’t really eat very well – only purees. I hadn’t thought of a drink treat – thanks for opening my eyes to this option.

    Kristina

  6. Te vuelvo a escribir, y viedo el niño llorar te queria decir que tengas una mirada lejos, lejos, no escuches su llanto. El tendrá mucho mas con lo que está trabajando que con la pena puntual de ese momento-. Esto es muy dificil, pero siempre que se vea el camino, uno no debe pensar en lo duro que es la colina o la montaña. Piensa en lo que caminando lograrás ver por ir, ir y caminar. Llegran lejos siendo fuertes. Es lo mejor que pueden hacer por que Nathan salga adelante. Se le ve fenomenal aguantando su equilibrio de tronco por segundos. Eso está quedando en su cabeza y se irá reafirmando cada vez mas ese logro. SUERTE!!

  7. http://Gwen says

    My son Logan has Semi-Lobar Holoprosencephaly. He is 4-1/2 years old and seems to have very similar attributes as Nathan. I was wondering if I could ask how old Nathan is? Also, the strength Nathan showed in the Medek therapy was amazing. I would love for Logan to get this type of treatment for trunk control. Any information you would be willing to share would be much appreciated. Gwen

  8. Hola marsela,estoy muy emocionada por los logros de nathan y tambien me da una luz de esperanza para mi Osvaldito me encantaria saber de que se trata esta terapia lei algo de chile traduci la pagina asi que no es muy claro,espero puedas ver el blog de mi bebe y seguir en contacto , auque se que estas ocupada ,mucha fuerza ,besitos grandes para Nathan y toda la familia.

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