Medek

Of all of the therapies we’ve tried out, I like Medek the most. To me it makes the most sense and seems to have the most potential to help Nathan with his gross motor skills.

For close to a year now we’ve been working on a daily home program with him. Juan Mario, his home Medek therapist, is absolutely wonderful. Nathan loves him and works hard for him. Very very slowly, snail pace slowly, Nathan has been getting stronger. I notice this in little ways..for example, when I take him to his cousin’s house, he wants to stand up and watch them play. He can now stand, with me supporting him at the waist, for about 10 minutes at a time. His head control is a little bit better, his trunk control also better.

What I’ve finally realized is that this will be like the feather and the stone. If we keep at it, day after day, month after month, year after year, eventually the feather will make a significant mark on the stone. I do believe this will take years and years but if we continue, I KNOW Nathan will have more strength and control of his body.

Most importantly, for right now, it is physical exercise, which he needs. He enjoys it. It keeps him healthy. And it is sustainable, as we do it from home. All things I like.

A budding sitter

By the time I came to my senses and filmed this, he’d been holding himself up for about 10 minutes. I know I know I’m always full of excuses, but I’m slow like that, and only come to my senses when it’s almost too late :-)

This, my friends, is the result of 6, yes 6, medek sessions in New York. I tried this a few weeks ago – nothing, he just collapsed forward or to the sides. Today, he did about 8 minutes without falling, and about 5 sessions fluctuating between 2 and 8 minutes. Joy joy joy!

He’s sitting on a balance board, which allows me to make very very slight corrections if he’s loosing balance. At first I had to correct him a lot, towards the middle almost not at all, at the end a bit more because he got tired.

If you’re wondering why I keep putting my face or hand in front of him – it’s to get him to sit up straight so he can watch his TV over my face or hand….sneaky sneaky :-)

Tiny tiny tiny steps…moving along…joy joy joy!

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.

Watch out Montreal

Because here comes Nathan!

Nathan, Owen, and nanny mcMary are heading to Montreal tomorrow for a cuevas medek intensive therapy session. They will be there for one week.

Belle and I are planning to spoil ourselves all week. We have joint massages scheduled and a joint manicure and pedicure. On Wednesday we’re gonna take my mom and grandma to the Santa Barbara beaches for some more R&R. We found a little cottage a few blocks from the beach for a fantastic price. We’re planning on staying 2 or 3 nights.

We’re excited about what this week will bring to all of us!

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!

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.

Feeling grateful

Even though I didn’t really do the whole “thanksgiving” thing, being by myself here in Chile, I’ve been feeling quite thanful lately. While I’m typing this post, Nathan is happily asleep and Lucky is going wild playing with his favorite toy, an elmo doll. I think this puppy was really meant to come to us – he LOVES elmo, just like Nathan. And talking about this puppy…he’s truly an amazing little dog. He’s now potty trained – in 2 days. Yes, I mean that. Day 1 with Lucky was a nightmare, he pooped and peed everywhere. Day 2 he only peed everywhere, no poop. Day 3 (today), he holds his pee and poo until I take him outside. I’m blown away by how smart he is! He’s already learned to walk on a leash and if I take the leash off, he follows me as if he did have the leash on. He’s just amazing! I guess it’s about survival of the fittest – for him to have survived out on the streets as a tiny baby, he must be one smart little dog. I’m feeling quite grateful that I was led to find him, he’s been a lot of fun to have around.

Talking about grateful…Mr. Nathan has been really blowing me away the last couple of days. His head control is SO MUCH BETTER! Today we went on a date, and he took me to watch Planet 51. I held him on my lap and was amazed that he spent most of the movie holding up his trunk and head quite well! His trunk sorta flops over a bit, he still can’t really hold his back straight, but it’s such an improvement! And his head was mostly straight through the whole movie. Then he took me to dinner at Tony Roma’s and after he drank a whole glass of juice and ate some chicken soup, I gave him some spoons and he started playing with them!

Talk about playing…Nathan’s never had much of an interest in playing. Over the years I’ve tried a million toys and a million different ways of getting him interest in playing, with no success. He gets bored in seconds. Not so with books – he can “read” books for hours – but using his body to play has always been distasteful to him. Until now!

Today we spent almost an hour on his playmat just playing. First I had hi in a baby gym and he was reaching and grabbing for the toys. He was even kicking the toy at his feet, which he’s never done before! Then we played peek-a-boo with cloths – I would cover him with them, and he would bat his hands and wiggle and kick until he uncovered his face. Then he prop-sat and read several books with me – he must’ve lasted about 10 minutes prop sitting!!! Then we played a “turning” game – I would help him turn to one side, then I would move over and make him roll to his back. I know this is just a tiny milinchstone – rolling from his side to his back – but it’s something he couldn’t do before! He can roll from his tummy to his back, but he can’t roll from his back to his tummy. So the fact that he’s rolling from the sides to his back is a step in the right direction. Now if I can get him to learn to roll from his back to his tummy, he may be able to start moving by rolling places! So I’m excited by this milinchstone. Then he played a matching game with me – matching the head of farm animals with the rest of their bodies – which he did almost 100% correct every time! Then we just hung out some more and talked and read and he touched his toys and played with the cloths and it was a lot of fun for both of us. I know this may seem minor but for me, it’s incredibly massively huge. It shows that his brain is maturing! He is showing an interest in toys, in using his body, in exploring with his body and mind. Amazing!

So I am grateful. I am grateful to have found CME (I should clarify – I am grateful that Lourdes’ family made it impossible for us not to try CME – so in reality I’m grateful for the Ives/Lourenko’s). I am grateful that Nathan has the chance to work with Ramon. I am grateful that he had stem cells a month before we came (I think stem cells are contributing to his maturation, combined with CME). I am grateful for the things I learned regarding nutrition and that he is so great about eating everything we give him. I am grateful that we found Lucky. I am grateful to be sitting here watching Lucky romp around the house with Elmo while Nathan sleeps peacefully after a fun, fulfilling day.

P.S – sorry I didn’t add photos or videos with this post – I forgot to charge my camera battery – I’ll charge it tonight and get him on camera tomorrow, promise!

CME update 11-25-09

2.5 years ago the word Inchstones entered our life. Now, today, I speak in milinchstones – the building blocks of inchstones, which are the building blocks of milestones. Today I want to share a few milinchstones:

He didn’t stand on his own, but once he stood, he stayed up for a few seconds! Ramon was really pleased with the fact that he didn’t just collapse, that he slowly crouched down, which takes even more control than standing up. Every time I see him standing like that it makes me so happy!!!

This one is super important. It’s the first time that Ramon has applied force downards, and Nathan has fought against the downard pull and stayed standing. Ramon has tried this a bunch of times but as soon as Nathan feels the downward pull, he goes down. This means he is learning that he needs to resist, and fight, gravity to stay upright! The anti-gravitational response that Ramon always seeks is kicking in!

He stood up instantly, which is a great response rate! It usually takes him at least 20 seconds to stand, sometimes as much as 50.

Here he is controlling his head and not letting it flop up and down too much. An improvement in head control!

Look how straight he is! There is very good alignment between the head, trunk, hips and knees. He stood this way for about 3 minutes, but I just showed a short clip.

The bad mama chronicles continue

This morning at about 7 am I was in the deepest of sleeps and in the middle of an REM dream…when all of a sudden I heard a THUUUUUUUUUUUD…followed by 3 seconds of silence….followed by a loud WAAAAAAAAAAAAAAAAAAAAAAAAAAaa. In 1/10 of a second I woke up, jumped out of bed, and ran to Nathan’s room…to find him not on the bed where I left him, but on the floor. Because falling from his chair on Saturday wasn’t enough. Now, before you call the Chilean child protection agency, let me tell you that Nathan has NEVER fallen out of bed because he never moves while he sleeps. Where you put him, you find him the next morning. He will turn his head from side to side and move his arms, but that’s about it. So how he came to roll from one side of the bed to the other and to FALL is inconceivable to me!

The good news is – WOW, he moved!!! CME is working! He rolled/scooted/turned???!!! COOL!

Needless to say, I bought a little bar and now he can move all he wants without falling off the bed.

And on the WOW note, now that we’re settling in to the new apt, I went out and bought some exercise mats so we can have an area for Nathan to play, which we didn’t have at the old apt. Today it ocurred to me to have him read a book while prop sitting. And lo and behold, he held himself up while reading a book both prop and side sitting for about 5 min’s each!!!! Another amazing accomplishment!! He owes this skill to Nathalie, his wonderful OT, who worked on this for a very long time with him. I was afraid he would forget since we haven’t tried it with him for 3 or 4 months (except once at therapy with Ramon), but not only did he not forget, he did it better than before! I’m pretty stoked about this, shows that the therapy is working on multiple levels.

I hope this is the end of the bad mama chronicles and that from now on I only have beautiful things to reveal :-) We’re going to bed early so…GOOD NIGHT!

CME update

Here are a few videos of the rest of Nathan’s week with Ramon:

Even though it was a tough week for us, he did well in CME and for that we are so grateful!

A million milinchstones

I am starting to see how a million tiny winy little mini milinchstones start adding up to make tiny bits of change:

19 seconds now! We used to be excited with 5 seconds, now we’re at 19 (counts, not seconds, the key is – the amount of time has increased)! It’s still tiny but my cute gorgeous happy snail is milinching towards the finish line, a few hundred laps around the track away!!

See what I keep saying about The Head? Once it’s supported, he has so much more strength and control!

Talking about The Head. We’re at WAR. Over the past few days, I’ve been sitting him up at 90 degrees in his wheelchair. He leans forward a bit, and then the fight begins. The head flops to the left, I fix it, then again to the left, I fix, then again left, I fix, then to the right, I fix, then left, I fix, then right – all in the span of 1 minute. Any time we’re walking anywhere, we play this “Fix your Head” game. I sound like a broken record. Fix your head Nathan. Fix your head. Head in the middle. Fix your head, head up Nathan, fix the head. Over and over again.

BUT. It seems to be working! He is going about 5 steps now with the head in the middle. It used to be I had to fix him with every step I took. Today I was able to go 5 steps without fixing. So it’s working! It’s working!

Why I love Ramon Cuevas

I’ve talked a lot about CME, Ramon’s therapy program, but today I thought I’d talk about why Ramon blows me away. Let me start with this video:

Now let me list the reasons why I think Nathan is in the best hands possible:

* he is always very positive. He believes his state of mind affects the kids he works with, so he makes sure to maintain a positive mind.
* he is very intuitive. he follows his intuition and sometimes chooses exercises that don’t make logical sense, but because of his attention to his intuition, he tries them and most often it was the right decision!
* if an exercise doesn’t work, he alters it and finds a way to achieve the desired response.
* he invests in the future. he chooses exercises that leave “seeds” in Nathan’s brain so that in the future, it’ll be easy for some exercises to work since he’s already laid the foundation. for ex, he does walking exercises with Nathan, which is obviously an investment since he’s not close to walking now.
* he is soooo good at what he does! watching him work is like watching an artist.
* his goal is to “pass on the message” to Nathan’s brian. he is not looking for results. he is looking for the brain to create a connection. this way, if an exercise doesn’t work out as planned, it’s okay – he passed on the message!
* he always looks at things from a positive angle. for ex, if Nathan didn’t fully stand in aerial, Ramon’s comment would be, “Wow, he did about 50%, how wonderful!”. He doesnt’ get upset and doesn’t force a result, he sees every inchstone as part of the process.
* he works Nathan from head to toes. in every session he works on Nathan’s head, trunk, legs, knees, ankles, hips, arms, etc.

All in all, not only is Ramon’s method magnificent, I also believe that his attitude, vitality, and energy contribute to the success of his treatment.

Why am I talking about Ramon this way? Not because I think everyone needs to bring their child to Ramon. Mainly because I think it’s important to choose a physical therapist that has all the right skills to help your child! Sometimes we settle for whoever EI sends us. I think it’s important to be picky and find the best possible PT, as our children are affected not just by what they do, but also by what the therapist thinks, the exercises he chooses, what the therapist believes about your child, etc. Sometimes it’s hard to rock the boat and search for another therapist, but if you’re not truly happy with your PT, it’s probably worth changing!!!

CME 11-12-09

This is the first time where he keeps his trunk up, without collapsing forwards, for more than 10 seconds.

This is another first. First time he is able to stand, completely unsupported, for more than 2 seconds. He did another one where he stood for 10 seconds, but I didn’t get it on camera.

Mini InchStones!

CME updated

Here is a picture of Nathan with his friend Youssef:

From 11-9-09

They are CME buddies and both very big TV fans :-)

And a video of Nathan doing a good job with his aerial standing:

I’ve been a busy bee

Over the weekend while talking with my cousin in Buenos Aires, I made the final decision to stay in Santiago until mid-March. That’s about as late as I dare traveling while pregnant – I will be 7.5 months pregnant then. I’m excited that Nathan will have the chance to work with Ramon for a total of about 6 months!

Two nights ago I had a dream. I was deep asleep and I dreamt of Nathan in a hyperbaric oxygen chamber. Somewhere in my subconscious mind I had the thought – this is what he needs to complement his work with Ramon. I woke up with this vivid awareness in my mind and jumped on the computer in the middle of the night, trying to find an HBOT chamber here in Santiago. I found one but the doctor said, “Sorry, we do not see children.” As I was begging him to reconsider, Ramon’s secretary Claudia heard me and said, “But Marcela, there are many other chambers, here are 2 more.” So I called around and tomorrow Nathan has an appointment for an evaluation with the doctor who runs the Hyperbaric Program at Clinica Las Condes.

My train of thought is the following: Instead of seeing Ramon twice a day, Nathan will see Ramon in the afternoons (which we had already planned for financial reasons). We will do another session with him at home. Then, every morning, I can take him to the Hyperbaric Chamber until he receives at least 40 treatments. Why mix the two, you may be wondering?

First of all, because I dreamt it. Second, it is recommended for people who have stem cell treatments to do 40 dives 90 days post Stem cell transplant. It is believed that the HBOT helps the new stem cells grow and “take hold” in the body. Nathan will be hitting the 90 day mark on Nov. 15th – which is exactly when I was scheduled to start just 1 session a day with Ramon. The third reason for considering HBOT is to enhance his performance in CME. I found a fantastic summary of HBOT here. In my hopeful mommy mind, my thought process is to increase his energy with the increased level of oxygenation to “prime” the brain to receive Ramon’s message loud and clear. As an analogy, imagine throwing a coin into a swimming pool, it takes much longer to reach the bottom than throwing a coin from the 2nd story of a building through air. My hope is that HBOT will be like throwing a coin through air and that Nathan’s response to Ramon’s treatment, and general health and brain development, will be enhanced.

Oh, and to complement my evil plan even more. Nathan will be in a multi-person chamber, so someone will go in there with him (I have to find out about the baby, but if I can’t, Denise will go in with him). He will be in the chamber for at least 1 hour every day. I believe they will allow us to bring a DVD player into the chamber. My hope is to have him watch a movie while Denise or I do ABR on him while in the chamber! This way we can get 2 hours of ABR in every day – one while he’s in the chamber, the other from 7-8pm, which we’ve been doing the for the last couple of weeks. We’re just doing 1 exercise right now (chest), I’m just trying to get into a good rhythm and to see some improvements in one area of his body to give me more energy and belief towards ABR.

So if all goes according to my plan, he will have 2 CME sessions, 1 HBOT session, and 2 hours of ABR every day. AND he would still have time to go to preschool :-) His day would look like this: 9am HBOT/ABR, 10:30am CME at home, 11:30am lunch and nap. 3pm CME with Ramon, 4-6pm preschool, 6-7pm dinner, 7-8pm ABR.

So that, my friends, is what I’ve been up to this week. Scheming away. If all goes as planned, Nathan will be starting HBOT and his new rhythm on Monday, November 16th. I’ll keep you posted!

Up up and Away!

Ramon believes that once we get Nathan doing aerial standing consistently, we’re on our way! Yesterday he was able to repeat the aerial standing 5 times. The previous time I showed this exercise, we had to use a schmata to give him some feedback. Yesterday we removed it and he was able to stand without the schmata and without a toy to stimulate him. As you can see in the video, it’s just the initial stage of this exercise – he has to be able to stand completely straight, and hold. But as many of you wonderful supportive friends have told me, PATIENCE! This journey will take a long time but the important thing is, we’re on the path!

This one I”m showing because it used to take him between 20-50 seconds to perform this exercise. Now he’s doing it in between 5-15 seconds.

Here you can see he has much more stability and a little bit more balance:

Once again, look how straight he is!

Compare to this one, when he last saw Ramon in Toronto:

Yesterday we had the pleasure of having Oulaa over to lunch. Her son Youseff has been working with Ramon for close to 2 years now: http://www.youtube.com/user/oulaalaoui . We had a LOVELY lunch and conversation and I felt like in our approach and way of thinking, we’re peas in a pod. She did give me some wonderful advice. She has been doing this much longer than I have, and she said it takes a lot of patience and perseverance. Some kids progress rapidly and they’re on their way quickly, other kids take a lot longer, a million repetitions, and an incredible amount of belief in their potential. She told me about her journey with Youseff, how he progressed rapidly and then hit a trough, and it’s taken him a very long time to start climbing out of it. But like me, she believes that now is the time to fight for her son, that even if he doesn’t show tremendous progress quickly, she has to keep trying and never give up.

As much as I wish Nathan was the rabbit, not the turtle, I have to admit that I feel deep, tremendous gratitude that he is on the path, that we found CME, and that I am seeing tiny tiny progress day after day. Honestly I think Nathan may not even be the turtle, he might just be the snail, but it doesn’t make a difference to me – what matters is that he’s in the race! We have a path, he’s on it, and how long it takes, doesn’t matter. Or so I try to tell myself :-) Please don’t think I’m a liar when I post in 3 weeks that I am having a hard time because he’s not progressing. There are good days and bad days. But I am trying to change my view and to always return to the fact that he’s in the race and he’s on the path. So please remind me next time I whine!!!

CME update

When we came to Chile, Nathan’s progress with CME seemed great and rapid for the first 3 weeks. Then he got sick, he got grumpy, and his progress slowed considerably. I had a feeling that something was just not right but I couldn’t figure out what was going on. Over the weekend in Buenos Aires, my cousin and I were talking about diet and she mentioned that oatmeal has gluten. VOILA! About 2.5 weeks into our time in Santiago, we were feeding Nathan massive amounts of oatmeal in the morning without realizing it has gluten! We ran out of our normal Bob’s Mill cereal from the US so we bought a Chilean bran of oatmeal and, welll…bad idea.

Yesterday we stopped giving him oatmeal and he had better sessions. This morning he had his best session of the last 3 weeks! He was happy, he worked hard, and he did great in his exercises! It’s amazing how something so minute can have such a massive impact.

I leave you with some videos of this morning’s CME session:

This is the first time in 3 weeks that he was able to do aerial standing. I am so excited to see him doing this again! It signifies progress!

And just a couple of pictures:PS. Ramon has been getting on my case lately to use the proper term for his therapy – CME. Medek was the old term, the new term is CME, so I will be calling it CME from now on.

No no no no no

If Nathan could speak, I bet that’s what he’d be saying in his CME therapy. He’s gone back to Mr. Complaney during therapy. The first 3 weeks he was GREAT – he didn’t complain, he did the exercises well and happily. But I think now that we’ve been here several weeks he’s decided not to comply. In any case, this is where discipline steps in. Even if he complains he’s going to have to work through it! It’s a good lesson for both of us :-)

Here are a few of his exercises today:

We’re back in the game!

Today Nathan and I had a wonderful day. I had a terrible night with fevers and vomiting and thought we were in for a rough day – especially when Denise, the nanny, didn’t come to work. It turned out to be the opposite.

After all of the wonderful support and advice, I felt happier and calmer. Maybe Nathan perceived this? He woke up happy and in a great mood. He did REALLY well in both of his CME sessions and is back on track! Both Ramon and I felt that today was the first day since he got sick that Nathan was back on track and happily working hard. I don’t have a care in the world when I see my son happy and working hard in his therapy. It was almost like he knew I was having a rough time, and he wanted to let me know that I shouldn’t doubt him, that I should have faith in him. If he could speak he would probably say, “Mommy, don’t give up on me!”. Baby, I hear you loud and clear.

I leave you with videos of his sessions today:

Nathan, I am so proud of you!

For you Tita

Nathan’s grandma Tita requested more pics and videos of Medek…so this one’s for you Tita!

Dear readers – if you request, I shall deliver!

Cuteness

Here are some pictures of the last few days:

In other news:

Nathan seems to be coming down with the same thing I had. Now that we know what it was, we’re jumping on it and I’m getting him on antibiotics tomorrow. He’s not feverish yet so hopefully we will stop this before it gets serious.

Also, Owen will be on his way to see us tonight, and arrive tomorrow night! Nathan and I are excited to see him!

Finally, today baby Max is 10 weeks old. So far this baby’s proven to be a fighter, just like his brother!

Max

For those of you wondering how Max is doing – everything’s going great! Max is now 9 weeks and 1 day old. I saw the OB down here today and he said the baby looks perfect. Everything is measuring right where it should be for the gestational age. I was able to hear the baby’s heartbeat and it was very strong – 179 bpm! The baby is attached properly and there are no signs of detachment. I was so happy to see the baby ! He no longer looks like a tiny little frog – you can already see the shape of his head and body. I walked out of there on a cloud! I still can’t believe I’m going to have another baby in less than 7 months!

The visit to the doctor here was so extremely different than it is at home. The doctor brought me in to his office and we sat for a nice long chat before he did any tests. He took his time getting a comprehensive history and it turns out that he was the doctor for a family that we met on Sunday that has a daughter with SL HPE, just like Nathan! What a small world! I feel as if I’m in good hands with him, he was warm, caring, and even gave me his cell phone number in case I felt the need to ask him any questions. How cool is that?!!

I went to the OB while Nathan was doing his Medek sessions so I am sad to report that I don’t have any pictures to share of his afternoon session. But you can imagine my surprise when I walked in and Ramon and his daughter Claudia greeted me with tremendous excitement. He stood up in an aerial exercise!!! Ramon was holding him by the ankles, and he stood up all by himself and stayed up in space, just by the ankles!! Can you believe that?? Ramon filmed him so I am going to try and get a copy of the video. He was ECSTATIC as it shows a sign of great progress for him to be able to do that already. Once they start standing up aerially, they’re on the path to independence!!!! So tonight I am on cloud 9, happy to know that both my babies are doing well :-)

Medek 9-29-09 AM

CME Medek 9-28 pm

Below are a few pictures of Nathan’s last session yesterday:

The first 5 pictures are from an exercise where Nathan had to turn his shoulder to face Ramon and then to initiate the movement of sitting up. The first few times Ramon tried the exercise, there was no response. But by the 7th time, he was able to do it! And afterwards he was able to maintain the sitting position for a while.

In the other exercises, he was responding quickly and standing up, and maintaining the standing position for a while (in one case, up to 200 count).

Medek AM session 9-28-09

I am hoping to keep a photo journal of every single Medek session starting today. Cybell and Patricio loaned us their camera (mine is still stuck in customs) so I am thrilled to be able to start keeping track of Nathan’s progress!

Here are a few pictures of this AM’s session:And a video:

(update) Here’s a video of Nathan doing this same exercise in Toronto:

I think you can tell a difference, right?

Today he lasted 150 numbers (close to 2 min’s) standing by shoulder and ankle (the attempt after the one in the video above, which was 1 min). This is his best time yet. He never went past 50 numbers before. In the 2nd exercise, he stood up quickly in the air, which was an exercise that he’d only been able to perform once or twice before. He was then able to stay standing up for a while afterward.

Preschool and Progress

Nathan LOVES his preschool. About 5 minutes after we got there yesterday, one of the kids had figured out that Nathan loves to laugh and was clowning around. Nathan laughed the whole time I was there at the preschool dropping him off (about 20 minutes). The teacher in charge of the class is really lovely, she was eager to get her hands on Nathan and to learn as much as she could about him so she could help him. He’s in a really small class with just 3 other kids, which is good as it will be easier for her to help Nathan. Nathan is the only child with special needs in his class, which is what I’ve always wanted to him – an inclusive environment.

Today when we got to the school, the boys were waiting for him and got super excited when they saw him! Nathan is here, Nathan is here! Right away they pulled out some puppets and put together a puppet show for him! Again they were trying to make him laugh and clowning around for him. It was just beautiful to watch. I feel this is such a perfect complement to his therapy and will make it a well rounded experience – hard work and lots of play! Now if I could find the time to take him to the pool every day we’d be golden :-)

He continues to progress in his therapy. Every day he gets a little bit stronger. I can’t say he’s making inchstones every day, but I can say he’s making milistones. He progresses a millimeter with every session. At times I get a little frustrated because I want to see inchstones if not milestones, but then I remind myself to be grateful for milistones. Lost of milistones will inevitably have to create an inchstone. Today he sat on a thin board balancing his upper body for about 2 minutes, which is his best yet. He also stayed upright balanced by the belly for about 2 minutes. Go Nathan!

Tomorrow I promise some videos, a wonderful, kind friend loaned me here camera so I can post some footage!!!

Nathan starts preschool tomorrow!

Today we went to a preschool across the street and guess what – tomorrow Nathan starts! I am so excited for him! Nathan will be going to Rocio’s school’s sister school. It’s run by the same director (she’s a lovely lady!) and thanks to Rocio and Sonia, they now have experience about how to integrate special needs kids into typical classrooms. Nathan will be the only special needs child in his class.

The school is across the street from us, which is fantastic. He will be going in the afternoon after his Medek session, from 4pm to 6:30 pm. I think he will really THRIVE from this opportunity! And I am excited that he will be in a class with typical kids!

Nathan’s Medek continues to go well. There was an exercise today where he stayed standing up for about 1 full minute, which is the longest that he’s been able to stay fully upright. Some exercises that he had a lot of trouble doing when we were in Canada, are now a breeze for him. Ramon keeps making the exercises a little bit harder every day.

Ramon believes that by continuing to “send the message” to Nathan’s brain, he will have NO CHOICE but to create new neural pathways for motor control. The progress will be slow but the more neurons we activate, the more chances he will have. He continues to be pleased with Nathan’s progress and faithful that by the time we leave we will see some significant changes!

I am working very hard not to be impatient. I can see tiny inchstones of progress but as usual, I want more more more. I’ve decided however that the paradigm of wanting more quickly hasn’t worked too well so I am working hard to just relax and settle into Ramon’s vision.

I’m hoping to borrow a camera in the next day or two so I can get some pictures up!

Walking Tall

I wanted to share a video with Ramon, talking about Medek. I think it’s a great video and gives a nice overview of the program:

Walking Tall

Please let me know what you think!

We’ve got internet!

Now we can properly chronicle our Chilean adventures. Yesterday we moved to a new apartment! The one we were originally in was too far from Ramon’s office, too noisy, and too small. We chose it because it was supposed to have a heated pool..well, guess what? It was FREEZING! So we complained to the agency and we found a new apartment. WE LOVE IT! The new apartment is much bigger and much more homey. It’s closer to Ramon and there is a mall, a supermarket, and a few more stores right across the street from us. There’s also a preschool that Nathan will be going to in the afternoons just across the street! And most importantly, we are much closer to MamaTerapeuta and Rocio :-)

Now for the most important topic – How is Nathan? Mr. Nathan is blowing me away with how well he is doing. He is doing the Medek sessions without crying! He is working hard and doing exercises that there was just no way he could do the last time we saw Ramon. Today he did his first aerial standing where he stayed up by the ankles and a little support to the head for quite a few seconds! Ramon has been VERY pleased with his progress. I must say that I have been moved to tears watching Ramon work with Nathan. He is just INCREDIBLE. He is able to get more out of Nathan than even I thought possible. But where sometimes I am cloudy, Ramon sees potential, and when you can see potential, you can elicit that response, which Ramon is doing for Nathan.

Other than Medek, Nathan’s been HAPPY HAPPY HAPPY! He LOVES adventures and is loving being in a new country. He is playing more with his toys, eating well, sleeping well (mostly), and in general is at his best.

My camera should be arriving soon and I’ll do my best to get pictures up as quickly as possible!

We’re in Santiago

Hi everyone! I hope you haven’t missed us too much :-)

We made it to Santiago without a hitch thanks to the wonderful Mary! You heard me right! At the last minute Mary was able to come with us and has been wonderfully helpful! Nathan was a doll during the trip and has been brimming with excitement.

We got here Sunday morning and rested and then in the afternoon we got to meet Mama Terapeuta and Rocio! We went to her birthday party and also got to meet many of her friends! They are as lovely as they appear on their blog! Nathan was super excited to be out at a party on his first day in South America.

And now for the bad news. I forgot my camera :-( Otherwise I could share some videos of Nathan’s first 2 days of Medek with Ramon. He is doing AMAZING! He hasn’t forgotten anything he learned and is starting at a better place. He is responding well to the exercises and is actually making an effort instead of complaining for the sake of complaining! I have felt so proud watching him make an effort and trying to keep a happy mind while working hard. I have so much hope and excitement for what we will see after Nathan works with Ramon for several weeks.

We have a ton of things planned for the next few days and are really excited. Tomorrow we are moving to a new apt as the one we’re in is a bit too far from Ramon’s office. We also found a preschool that is willing to take Nathan in the afternoons after his Medek, so he can have some interaction and involvement with other children. We also found a pool where we can take him every day. We also have a few outings planned with other families here in Chile! We are so excited!

The only drawbacks are: We miss Owen, and I have CONSTANT morning sickness. It starts in the middle of the night and stays with me till about 5pm. It’s hard to function! Fortunately Mary has been helping and we are trying to find someone to help me when Mary leaves on Friday.

Here are some pictures from Rocio’s birthday party that I grabbed from Sonia’s FaceBook!

CME Medek exercises with Ramon Cuevas 6-22-09

There was a video that I accidentally didn’t add to the previous Medek post, so I’ll add it here first:

Now here are some of the exercises he did on the last day.

CME exercises with Ramon Cuevas 6-15-09

These are some of the exercises that we did on day 2.

About Cuevas Medek Exercises

Before I continue posting videos, I thought I should talk a little bit more about this therapy, how it works, its premises, etc. I’ll share some of what I learned from Ramon and just put together what I learned from his site and other parents.

Back in the 70′s, Ramon was a regular physical therapist working in Venezuela. A couple of years into his practice, he was depressed because he felt the kids were not improving. Some did improve a little, but it was mostly as a result of age and time, not because of his efforts. So he decided to start experimenting with different exercises. He wondered what would happen if he “removed support” and challenged the kids to do more advanced exercises. What he found was very promising. After a few months, he was ready to share his findings with other therapists and CME began.

One of Ramon’s major findings was that the more he removed support to the child, the more the child’s brain would provide the necessary information for the child to do the work himself. So for example, if I give Nathan full support to sit up, his brain will rely on this support and will never give the command to his body to sit up on his own, without support. Same with balance. A child that has never needed to balance on his own will have difficulty balancing, because those motor pathways in the brain are not activated. Ramon’s exercises created situations where the brain had to provide this information to the child by necessity. He explained to me that children with brain injuries and neurological disorganization will often need stimuli in order to activate these neural pathways.

One of the main premises, and one of the most amazing things that I heard him say, is that every human being has the genetic imprints to do certain things by a certain time – by 3 months you roll, by 8 months you crawl, by 15 months you walk. That information is present even in the most brain injured individual. So Ramon decided to figure out a way to activate the data in those cells so that they become accessible to the brain’s command center. He explained to me that there is not much wrong with Nathan’s muscles. Of course they’ve atrophied a bit from lack of use, and he has general weakness. But the main problem is the brain is not giving the body the proper signals to hold his head up in the middle, to bear weight on his legs, etc. Removing support, making them pull up against gravity, creating a sharp “need” in the brain – he found these situations activated dormant cells and neural pathways. Then, with enough frequency and intensity, the brain would establish those pathways and they would become fully available to the child.

Ramon’s therapy is based on the principle of brain plasticity and neurological organization. He doesn’t like to use the term plasticity because plastic isn’t malleable – once a plastic is completed, it is stuck, fixed, unchangeable. He said the brain, on the other hand, is wonderfully malleable and constantly changing and organizing. So his job is to create situations to mold the brain to respond in a certain way to certain situations. He does each exercise 3-5 times, depending on the child’s response, to give the brain enough intensity for the stimuli to have an impact.

If the impact is repeated too often, then the brain shuts down and can’t assimilate the information. If the impact is too weak, then it doesn’t change. If he does the same exercise too many times, the brain “acclimates” to the stimuli and ceases to notice. So as one of its basic premises, CME keeps the brain activated and engaged during each session.

But I digress, let me return to the history. He created his series of exercises and called the therapy Medek. He was having such amazing success that he kept on creating exercises and improving and modifying his methods. Then in the year 2000 he changed the name from Medek to Cuevas Medek Exercises, or CME. He then created training seminars and a certification course to train other physical and occupational therapists how to do the same work.

Each medek exercise has a particular goal, but often, many goals are achieved with the same exercise. For example, one exercise may target trunk control, but it is done in such a way where the child also works on balance and head control. In some cases, the goal is standing and strengthening the knees, in another the thighs, in another the object may be balance. Ramon has over 900 exercises that he has created to stimulate kids at all levels and stages of development.

I witnessed the amazing variability and adjustability of his therapy. Ramon was like a magician. For example, he wanted to do an exercise called “horsey” with Nathan. He tried it one way and Nathan just wasn’t strong enough. So he then tried it a different way and got a better response. Then he added a wrap to give Nathan a bit more support and finally was able to evoke the desired response.

He explained to me that it is important for the therapist to be attuned with the child and to read the child’s signals very well. There is definitely an important rapport between the child and therapist and the child’s success depends entirely on the therapist or parent’s sense of security and certainty in the exercises. He explained that if a child doesn’t “kick in” in a particular exercise – it’s not his fault, ever – it’s the therapist’s fault. The therapist has to make sure he/she is doing the exercises right to evoke the correct response. This was KEY for us because we had been doing a home program that wasn’t very effective. We went through the motions of the exercises whether he kicked in or not. Now we know that if he’s not “activating” then we’re doing it wrong or have to try the same exercise a different way, or a different exercise.

Another benefit of the therapy is increased neurological organization. As these motor pathways start to be created and expanded, the brain achieves more functions. Kids start gaining better use of their hands, they start gaining better cognitive development. Ramon doesn’t claim that this is directly due to CME, but he does believe strongly that with improved neurological organization come many benefits.

He did tell me that his success ratio is about 75%. 3 out of 4 children will respond very well. 1 child will not respond. The level of success of the 3 kids that improve depends on many things of course. Some children can learn to walk completely normally, others continue to work on balance, others gain head and trunk control but may not be able to walk. This depends on the plasticity of the child’s brain, the age at which he/she started, whether a home program is followed, how many CME sessions the child does, etc.

Ok that is enough for now. I will write a few more posts as I remember things :-)

CME exercises with Ramon 6-14-09

Okay, I am going to post the promised videos of Nathan’s first appointment with Ramon on Sunday. Then I’ll do separate posts for days 2 and 3. Then I’ll write a couple of separate posts writing about some of the things I learned from Ramon regarding his therapy, how it works, and why it works.

On the first appointment, Nate wasn’t feeling too good, so he was whiney and uncomfortable, and Ramon took it easy on him. He had a low grade fever so we were trying to be gentle. TIDBIT: Ramon told me that Medek would bring down his temperature. Lo and behold – it happened. By the end of the appointment, the low grade fever was gone.

Anyways, it was a good first day.

Wordless Wednesday

A series of fortunate events…

It was definitely a series of fortunate events that brought us to Ramon Cuevas…and how happy and grateful we are!  Today Nathan had his first appointment with Ramon.  It was AMAZING!  The man is a true master, an artist of his trade.  There is no one like him in the disability world.   He played Nathan like a master musician plays a violin..it was amazing to watch.  Nathan did things that he’s never done before, just because of the skill in this man’s hands and attitude.

After Nathan’s appointment with Ramon I was able to go to dinner with him and Simona, his #1 student.  We had a lovely time discussing CME, its history and future.  I learned all about how CME was conceived and what Ramon hopes to accomplish.  It was so amazing!  Can you imagine having dinner with someone like Mozart or Van Gogh?  That’s what it felt like, having dinner with Ramon Cuevas!  I have no doubt that in some year’s time, CME will be the standard of therapy and Ramon will be treated like a hero.

What I loved about watching Ramon work is the passion with which he approaches his trade.  By the time I met Ramon and Simona for dinner, he had worked 14 hours with about as many children.  I figured he’d be exhausted – I was wrong.  He was full of joy and energy.  He told me that working with the kids gives him joy and energy, that he LOVES working with them and empowering them, and he never gets tired for the excitement of watching children progress.  You can sense that energy in him, it is contagious.

I know this post is a bit aimless…I guess I am saying that CME (Cuevas Medek Exercises) is AMAZING, and it’s creator a true artisan, a true magician and wizard of his trade.  I am excited to see what he can do with Nathan.

As for Mr. Nathan, he did very well in his appointment with Ramon today.  He was a little bit off, with a low grade fever and just a general lack of energy.  But even with that, he did well.  Tommorrow and Tuesday we have 2 appointments each day so we’ll see how things go over the next 2 days.

As for me, I can go to sleep tonight feeling sure that I found the very best person in the world to help Nathan with his gross motor issues.  Ahhhhhhhhhhhh…..what a relief………..what a joy, to go to bed knowing I did the very best I could to help my boy.   SIiiiiiiiiiiiiiiiiiighhhhhhhhhhhhhhhhhhhhhh.

Mission Impossible?

My trip to Canada started with a most exciting adventure.  My alarm decided not to go off in the morning.  I got up to go to the bathroom and calmly went to the bathroom, stretched, grabbed some water..and decided to check the time.  I almost passed out when I noticed that it was 5:15 am – and my flight left at 7:02 am!  I took a 2 min shower and ran out the door.  I made it to the airport at 6:15 but by the time I parked the car and went to check in – it was too late to check my bag in (you have to arrive at least 45 min before departure time).  If I missed the flight, not only would I have to postpone seeing Nathan, which I just couldn’t handle, I would’ve also have had to buy a new ticket.  So I ran to the car, ditched my suitcase, grabbed a pair of jeans and a couple of shirts and stuck them in my handbag, and RAN.  I got to the gate 2 min’s before closing time.  I got on the plane, they closed the door, and off we went.  It was quite exciting.

I made it to Toronto without further incidences, late on Tuesday night, and found Nathan healthy and happy.  I have never been so happy to see anyone in my entire life!  Between my meditation retreat and the Canada trip, I didn’t see him for 2 weeks!  He was happy to see me too, if I say so myself :-)

Wednesday morning, on our way back from breakfeast, I noticed a sign that said “Blue Balloon” at the hotel we were staying at.  I recognized the name because Blue Ballon is the name of a physiotherapist in Toronto who practices Medek too.  So I read the sign and it said something about Medek and certifications.  Curious, I asked at the front desk and they told me there was something going on at one of the conference rooms in the hotel we were staying at.  Even more curious, I decided to go upstairs and check it out.

To my sheer amazement, I met Ramon Cuevas there – the founder of Medek!  Can you imagine the coincidence?  There are 365 days out of the year, and out of those 365, he chose the same 14 days to be in Toronto that we chose to come for Nathan’s Medek therapy.  And then, of all the hotels in Toronto (there have to be at least 200), they chose to stay in this hotel.  And of all the hotels I looked at, I chose this one out of about 20 choices that were very near Esther’s office.  So all of those things coincided to bring us to Ramon’s door.

So we spoke with Ramon who told us to bring Nathan on Friday.  But this morning, since we didn’t have our first appointment till the afternoon, we decided to drop in and observe while they did their training.  And, surprise surprise, only 1 of their kids had showed up and they needed another child to use in their course!  So we volunteered Nathan.  They had a group of 4 therapists go through an evaluation with Nathan, supervised by Ramon.  Then, they created a home program for him.  We were there for about 3 hours.

During that time, I got to talk to Ramon, observe him with Nathan and the other kids, and learn some more about his theories and the history of Medek.  I was fascinated!  He is brilliant, and charismatic, and WONDERFUL with the kids.  When I introduced him to Nathan, he said, OH, like Mission Impossible!  And I laughed and said, yes, that’s my Nathan.  Mission Impossible.  And he said, Not Anymore sweetheart.

So now I am torn.  I love Esther and I think she is an INCREDIBLE therapist.  But now we’ve met the CREATOR of the therapy.  This is the man from whose mind this whole program was created.  This is the man who saw and felt it in his bones, who created the exercises, who had the brilliance and creativity to invent this.  Of course it would be amazing to have him work with Nathan!  But unfortunately, it turns out that him and Esther no longer work together so we can’t work with both therapists – we either work with Esther, or we work with Ramon.  Ramon said that he has changed some of the exercises and the ways he does things so things are different from the way Esther learned 10 years ago.    Can you see the dilemma?  We love Esther, she’s helped Nathan a LOT, we think she is WONDERFUL.  But we also loved Ramon and the way he handled Nathan and the way he’s doing some of the exercises.

You’ll have to keep an eye on this channel for further updates as the situation unfolds.  In the meantime, I managed to get some pictures up – they’re terrible quality, but at least they’re something.

On another note, Nathan is doing very well.  I do have videos but the connection is too slow for me to upload them while I’m here.  I’m sorry to say you will have to wait until I get home to see pics and videos.  I have noticed 2 things.  One is that he is definitely stronger and more capable of doing the exercises than he was 8 weeks ago.  The other is that he is less willing to cooperate.  Last time he wasn’t complaining much and was willing to work hard.  Now that he’s had Medek in his life for 2 months and knows how hard it is, he likes to play possum when we get to Esther and it’s time to work.  He just goes limp and doesn’t help with the exercises.  Esther has to be VERY creative to get him to “kick in”. It’s hard to see but I totally understand him.  It’s very hard work for him!

I made the decision today not even to care whether he cooperates or not, and not to look for progress.  I decided to commit wholeheartedly to the therapy (whether with Ramon or Esther) for at least 1 full year before trying to evaluate or look for changes.  Then after a year I can make a decision.  But for now, we will keep doing it and working hard and know that, even if it’s by osmosis, he is improving.

I was hoping to write and say, oh my god, nathan can now sit up! Or, oh my god, Nathan can now stand!  But that’s not the way of mission impossible, is it?

So overall, it’s been a fascinating couple of days.  I still can’t get over the absolutely insane coincidence to have met Ramon Cuevas in Toronto.  Even though Nathan screams bloody murder in therapy, the moment Esther says, “All done” and gives him to me, he’s happy as a lark.  Other than the time in Medek, he is just happy and cheerful and chatty.  So I know it’s more of a moral objection than physical pain.

But if you forced me to give you an answer to whether or not he’s improved, I’d have to say – yes.  He is a little bit stronger.  He can do some exercises now that he couldn’t do before.  He can stand for longer periods.  In Ramon’s assesment, he didn’t score 0′s in everything, like he did the first time.  So there is progress!

Tommorrow we have another full, busy day.  We see Esther at 9 am, Ramon at 11am, Esther at 2pm.  I’ll keep you guys posted! I’ll try to take pics so you can see…the videos are hard to upload, but pictures are quick, so at least you’ll have something to look at :-)

Off to Canada!

I’ve just gotten back from putting Owen, Nathan & Mary on a plane to Canada.  The doctor said I have pneumonia and tonsillitis so travelling wasn’t a great idea.  Owen was able to step in and take my place on the trip so they’re on their way now!

They’re seeing Esther Fink for a 2nd Medek intensive.  I am sad that I couldn’t be there but excited that Nathan was still able to go.  He has a little bit of tonsillitis himself but we caught it so early that we don’t think it will be too tough on him.

I’ll keep you posted as I hear updates from Owen about Nathan’s progress with Medek!

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 :-)

Settling in

We’re back home and have adjusted to the new flow of our lives.

Life is good. Nathan is over his cold, and very happy (except when he doesn’t want to do medek). We’ve settled back into routine with his normal activities. Today we had a play date with a local family of a child with special needs, and then went to swim class. There is an energy of relaxation around our house because now we can just focus on one thing, instead of too many. It’s wonderful!

We’re getting a handle on the Medek exercises and getting into a “groove” of doing 2 sessions every day. Today he had one AMAZING session where he pulled up and held himself for a while!

So I just wanted to write a brief note to say where are back home, settling into our new routine, and happy as can be.

Quick Update

We are doing well. Nathan seems to have a little cold but continues to work hard with Esther. Evey day he seems to be able to do something that he couldn’t do the previous day -it’s amazing.

I don’t have much time on the internet to upload many videos, so I thought Id just show one today:

Esther was really proud of him for this one, she said it required extension from the head all the way down to the feet, and he was able to achieve it. Hooray Nathan!

We are starting to get a bit worn out from being away from home so it’s starting to get a bit hard for both of us, but we are hanging in there and excited to learn more of the exercises and to see Nathan responding to them.

Thanks for checking in!

Still in Toronto

We decided to stay another week in Toronto so Nathan could have more time with Esther. We are all so happy with his progress that we figured it would be ideal if we kept going. The Ives kindly offered to host us for another week and Esther was able to clear up a couple of appointments so Nathan could see her at least once, possibly twice a day this week.

Owen went home to look after the doggies and to get back to work, while Nathan and I stayed here. Mary, Nathan’s nurse, is flying out and should be arriving tonight. Once again, it’s amazing how everything worked out to give Nathan this opportunity to continue to strengthen his body.

Today was my first day trying the exercises. I started to do them but realized I just wasn’t prepared enough. Esther makes it look so easy but in reality it’s quite hard and how you position your body determines the success of the exercise. So I spent most of afternoon and evening going through all of the videos to learn how she does the exercises. I wrote out instructions and captured still shots (from the videos) of each of the exercises as she went through the sequence. Tommorrow I’m going to take them to an office depot and get it printed and in a folder/binder so we can have them handy as we’re doing the exercises.

I am so excited to start doing them! Having gone over and over them today I feel pretty confident that when I start with him tomorrow morning, my technique will be at least adequate.

It’s been such an emotional week, I have been laying in bed at nights just floating in gratitude, grateful to have found Ester, grateful for the Ives for telling us about her, grateful for everything they’re doing to help us with this program, grateful that after all these years and so much searching we’ve at last found the right program for Nathan, grateful that our jobs are flexible so we can work from anywhere! Grateful that Nathan enjoys the exercises and wants to become stronger. Grateful that Ester was able to see us and that she is as kind and honest and strong as she is. Grateful that my prayers were finally heard. Grateful that Nathan’s been super happy through this whole journey.

And for those of you wondering if I will stick to this? You bet we will!

I’ll try to post a couple of videos as the week progresses.

Did I say I love Medek yet?

If I did, I’ll say it again – I LOVE MEDEK!

Today was a bit different. Instead of putting Nathan through the series of exercises, Ester focused on teaching US how to do the exercises. OMG, they are hard! Ester makes it looks so easy. We found them pretty challenging but I’m sure with practice we will learn them.

It was REALLY COOL to do some of the exercises and feel as Nathan’s body “kicked in” and did things I never thought he could do. And I LOVE the feeling of being the one doing this for/with him. He complains a bit during certain exercises but mostly he really likes it! As Owen and I did the exercises, we made it as playful as we could and he was having a lot of fun. So I think this isn’t going to be the torture I thought it was – today I realized it is actually going to be fun! And it feels amazing to know that we ourselves are going to be doing this and watching/feeling as his body gets stronger every day.

I just feel so very enthusiastic and hopeful and optimistic about this. And I feel grateful that we fell into the very best of hands. Ester is a wonderful, knowledgeable, kind, dedicated, devoted therapist who is committed to rehabilitating her kids. So, things are good for us! We are looking forward to getting home and getting started doing the program ourselves every single day!

Tommorrow is our last day with Ester. She will finish training us. In the evening we drive to Buffalo, then we fly home Saturday at 6 am. If I can’t update before then, it’s because we’re travelling.

Oh and how is Nathan, you may be wondering? He is the happiest he’s been in a long time. Life is good.

At last

At last we found the program/therapy we’ve been looking for. At least we have a program that will help strengthen Nathan’s body and give him more function and abilities. At last I can stop searching, and settle in for the “long haul” with just one program. Hallelujah!

I LOVE MEDEK!

Already in just 3 days Nathan is getting stronger! In todays’ therapy he did things he couldn’t do on the first day. Even after Medek I feel him wanting to pull up, wanting to hold up his head and trunk, wanting to stand on his legs and pull up. It is amazing to watch him! It’s almost as if he was just waiting for someone to tell him he had to pull up against gravity, as if he just didn’t know what to do!

Of course he also needs a lot of strength. I know Medek isn’t a miracle cure, I know it will take a long time and a lot of work to build his strength. But I have NO DOUBT that he WILL get stronger. How amazing!

Ester mentioned several times today that she can see changes in him. She likes working with him, she sees the potential in him. He likes working with her too. He complains a bit, but mostly has now settled into the routine.

Tommorrow we will start being trained on how to do the exercises ourselves so we can do them at home with him. In the meantime, here are some videos: