Back to sleep

So I have a small triumph to report. Ever since Nathan was born, he’s slept on his belly because of his exaggerated startle reflex. As soon as he starts falling asleep he startles, his arms flail out, which wakes him up, making him unable to sleep on his back.

Well, as of this week – Nathan can now sleep on his back! His exaggerated startle reflex is GONE GONE GONE!

All we do is place him on his back, with his head on a pillow, this pillow brace in between his legs for his hips, and voila – out all night.

We are SOOO happy and thankful!! This will mean his back and hips will stay in better shape!

Walking, talking, sitting

Today I realized that so far this year, Nathan has learned to walk, talk, and sit.

Sure, he walks with a walker. But hey, it’s walking! He can go when he wants to go, stop when he wants to stop, and go where he wants to go!

Sure, he talks with a computer. But he is learning to tell us he wants to go to the mall, watch Phineas and Ferb, play simon says, make the cars crash, say “Hey what’s up”, choose what snack he wants, and much more.

Sure, he is just sitting for a few minutes and easily falls and it’s not yet functional sitting. But HE IS SITTING! Honestly I wondered if I’d ever see the day, every time I see him I have to pinch myself!

Sure, he has a long way to go to improve these 3 emerging skills. But he is LEARNING!

So often we focus on what we want, and so little we focus on what we have.

And what I have is a gorgeous happy smart little boy that is starting to walk, talk, sit! In his own adapted way, but hey, I’ll take it and cherish it!

PS I’m having trouble with my PC reading my SD card so pictures coming soon when I fix the problem.

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!

So Much

So much going on.

So much more to do.

So much hard work ahead of us.

So much to be grateful for.

We’ve ditched the wheelchair. The last few days, we’ve only taken Nathan out in his Pony Walker. Why push him around when he can get himself around???!!! It may look like we’re pulling him, but I pinky swear we’re not…we simply hold the leash to direct him as otherwise he crashes into things. But he’s the one moving it.

Yes, he has a long way to go. Yes, his gait needs a lot of improvement. Yes, he still has to learn how to direct it. But the way I see it is…he finally got the concept of reciprocal stepping…finally figured out how to overcome his spasticity and hypotonicity to get himself moving…finally developed the DESIRE to figure it all out…now he has the rest of his life to get stronger and perfect his gait!

Making the car crash is still his favorite page on the Dynavox. Just in case I had people telling me he wasn’t smart enough to figure it out, I want you to observe how he looks at it, then, when he hears the words, he looks at me and smiles, waiting for his reward – the cars crashing.

Notice how he moved his head when he made his selection…he knows exactly what he’s doing, and you can see the effort in his face as he’s “holding” his gaze to make the selection. Notice also that I moved the “car crash” to the other side of the screen, to show that he can get both sides of the screen just as easily, and that he’s not just accidentally hitting the same one over and over again.

Here’s an even cooler thing…he started looking around and exploring various pages…he found the snacks page, and proceeded to ask for his bottle. Sure enough it was snack time and thhe protein smoothie is his afternoon snack. He asked for it twice. So I went and got it and made him do it again so I could film him and share with you guys. He drank it with such GUSTO.

He also started music therapy, and as you can see by his expression, he LOVED it. With his Feldenkrais practitioner, we’ve been working on having him open his hands. You can see that it’s working!

Even with his “bad” hand!!!! The therapist tried getting him interested in other instruments, but he kept looking at the guitar and saying “mo” “mo” “mo”.

So much fun to be had.

So much rejoicing to feel.

So much to be amazed about.

So much to be grateful for.

Look who’s walking now…

This video was taken at his school right when I got there. He was just getting started. It wasn’t long after that he was RUNNING in his walker! He spent 45 minutes in the walker – he ran around the room in circles, down the hall to visit his friends in other classes, and back around the room – he didn’t want to get out of his walker.

The little boy that was going to be a vegetable is now walking in a walker and talking with a computer!


Nathan is doing GREAT!

His teacher was almost floating with pride when she told us at the IEP meeting that Nathan can now move a Pony walker all by himself! I didn’t quite believe her so I asked her to put him in the walker and I almost passed out with joy when I saw him walking in it! Hooray hallelujah hooray!

He also met every single one of his IEP goals and we’re now making more complicated ones.

Today we worked on the IPAD with proloquo2go. I confess we haven’t been using it much (proloquo). He has trouble being consistent with it because of the spasticity in his arms and hands. But today he did the cutest thing. He grabbed my hand and brought it over to the IPAD. He then start using my hand to press the buttons. I’m not sure why he thinks that’s easier, but it completely transformed his ability to use it! Using my hand he told us he wanted to go outside and get in the pool. I asked him if he was sure and he went through all the steps to pick it again, so outside we went for a quick dip of our feet. Then we went inside and he went to the “I want to go” then “Outside” buttons, and picked the swing. So we put him on the swing and he was giggling and laughing, he was so proud that he’d told us what to do!

Then he told us he wanted to read a book and to play with a car.

Finally he took us to the “I feel” tab and told us that he was tired. Then we asked him if we should put the IPAD away and he used his yes/no talking buttons to say YES. Then, thinking it might’ve been a mistake, we asked him if he was sure and maybe he wanted to say something else. He wouldn’t really move his hands. We sat there waiting for a while but he didn’t do anything. So we asked him again if he was done and he used his yes/no button to say yes. Incredible!

And to put icing on this cake – he is still trying very hard to say words! Everyone keeps telling me they heard him say stuff. Today during the session he said “elmo” when he picked a book, telling us he wanted his elmo book. He also said “boo” when we asked him to say “book”. He’s now saying: mo (more), ma (mama), boo (book or boat), gampa, agua, nalga, yeah. We’ve heard other words but not consistently yet.

We’re so proud and so happy to see him making inchstones!!!!

(Sorry no pictures my hands seem to always be busy with a bundle of cuteness and I keep forgetting to take pics!)

The Rune of Wisdom

Today we had our monthly appointment with Dr. Kenny. Every time I go to her office, I draw a little stone tablet with a carving (a rune) from a little bag. There are 25 of them, and each one symbolizes something. There is a book that explains each of the runes. Well the last 3 visits I have drawn the exact same rune each time – the rune of wisdom. I don’t do math but the probability of drawing the same rune 3 times in a row out of 25 options are pretty low. I think God is trying to tell me something :-)

My favorite part?

It is through wisdom that a tragedy becomes a teaching.

Wisdom is a journey. It helps us transfuse difficult experiences into meaningful opportunities. It helps us see situations through a different viewfinder.

I always wonder and second guess myself about whether I am making the right decisions for Nathan. Am I doing too much? Not enough? Should I enjoy his happiness and give up on my quest for improvement? Maybe you’re tired of hearing me ask this question. But with a child whose very life depends on these decisions, it’s not easy to stop wondering! Thinking about wisdom helps me understand that the path is to keep seeking, and that as I question and ask and look at things differently, the answer will become clear. Maybe the answer is that there is no fixed answer and that it’s all about doing my best at every fork in the road.

I leave you with a few more pictures:

We celebrated my aunt’s bday at TGI Friday’s, and after dinner we went for a little walk while Nathan rode his tricycle and then we watched an outdoor movie.

He loooooooooooooves his grandma nalga.

And here he is with Dr. Kenny. See where his right hand is?

I don’t know what his dad is teaching this boy, but he’s sure up to no good!

He really enjoys his appointments with Dr. Kenny and he loves her so much!

And here he is sitting after his appointment – he lasted a couple of minutes!

And here he is holding his head up nicely a couple of days ago. This is pretty new and exciting for us!

Inching forward

And his reward…

And here he is, learning to communicate with his dynavox

While we work on getting the eye gaze, he is learning 2 switch scanning.

In the meantime, Belle zooms forward:

I am one proud momma.

Yes, the “crawling” isn’t pretty, he’s not really down on hands and knees. But he is MOVING. Do you guys know how long I’ve dreamed of seeing Nathan moving in any way, shape or form?

Once his brain understands that he can use his body to get where/what he wants, I think it will kindle his will which will then give him a motivation to work hard in therapy. Up until now he has never moved on his own. Now he can kick his feet and GO! I am sooo happy! And even if this doesn’t lead to anything … it’s SOMETHING he can do!!!

Part of me was thinking today…great, now we have to get his hands and knees on the floor…but NO. I am going to sit on my laurels and ENJOY this inchstone of Nathan’s! Good job Nathan, you are amazing!!!

And some more pics of Belle:


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

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

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

I lied

Not on purpose.

It’s just that…after saying farewell…I realized, I’m not ready to give up this blog! I enjoy it too much!

So a couple of people suggested – compromise!

Just change your frequency, intensity and duration – blog shorter, less often, and without feeling so responsible. Have I every mentioned common sense isn’t my forte? Or that I tend to live in extremes? If I haven’t, I bet you’ve figured it out by now ;-)

So anyways, my plan is to continue this blog, but taking it easy.

So today, I leave you with this video:

Why we do it

I know some people think we’re crazy for doing all we do with Nathan. Some people think we’re chasing a dream and we should just accept reality and stop running around doing therapies. They think some of the stuff we do is nuts and why can’t we just follow convention.

The answer is so simple: Quality of Life.

I love Nathan exactly the way he is. I accept him. He is absolutely perfect. If he stays exactly the way he is for the rest of his life I will be blissfully happy with the incredible little person whose life I have the good fortune to share. Of course I have my human moments where I get down and want him to do more – but these are just moments.

As I have said many times before, my two primary goals for Nathan are Health and Happiness.

That is 80% of the reason we do what we do. The supplements we give him, the therapies we do, the activities and equipment we use – everything is meant to maintain his body in good health which prevents surgeries and illnesses which in turn keep him a happy, content little man.

In all honesty, I believe conventional medicine fails miserably at achieving this goal. Until I had Nathan, I was a 100% believer in conventional medicine. I never went to “alternative” doctors, I believed traditional doctors, I did what they told me to do, I took the prescriptions they gave me. But having seen how miserably conventional medicine failed Nathan, I was forced to seek alternative routes. Thereafter, it was simple.

Conventional – Nathan was sick all the time.
Alternative – Nathan became increasingly healthy and happy. He is rarely sick. He has not been hospitalized at all since we started with alternative treatments like muscle testing, chiropractic, nutritional supplements, and energy medicine.

Beyond simple. And since alternative medicine is so vast and unknown, it necessarily has to be a trial and error situation. How can we know what does or doesn’t work if we don’t try it? How do we know which ones are the good and the mediocre practitioners? So try we do. We try and we try and we try. And through trial and error we have found some fantastic treatments and healers.

But as you know and I openly share – nothing we’ve done has given Nathan any major functional gains. He is still not talking, not sitting, not holding up his head, not standing, not rolling, not not not. So why do we continue? Why do we keep trying and trying? Once again, it’s simple.

Quality of life. The other 20%.

Even the most minute of inchstones can make a huge difference to both Nathan’s quality of life and our quality of life as his family and support team.

Today I witnessed one of these inchstones. We’ve been working on “yes/no” responses using his 2 button switch talker. A few months ago, it was very hard for Nathan to use this switch because he didn’t have enough control of his hands to reach over to the furthest one. Also, he didn’t have enough precision to hit the button accurately.

Until today. Over lunch Nathan and I had one of our first “conversations”. Because of all the stuff we’ve done lately, he now has more control over his hand, and he gained the ability to flick his wrist so he can easily press either of the two buttons. He has so much more precision now and can do it consistently. So we started having a yes no conversation. It went something like this:

Nathan do you want more pasta? Yes. Do you want some water? No. More pasta? Yes. Did you have fun at school today? Yes. Do you want more medicine? No. Would you like to eat more pasta? Yes. How about water, would you like some? No. Would you like me to call daddy so he can say hi? Yes. Do you love your sister Belle? Yes. Are you ready for nite nite? No.

I kept changing the questions to see if he was hitting the buttons purposefully and he was 100% purposeful and very accurate. This conversation brought tears to my eyes! I can now “talk” to my son and he can express, clearly and consistently, what he wants! This is INCREDIBLE!

Can you put a price tag on that? Can you put an effort tag on that? Can you call me crazy for being willing to go to the ends of the earth to help Nathan gain these inchstones that mean so much to him and to us?

I love him just the way he is. But now I can also ask him what he wants/needs. Now we can have conversations. Now I can understand him better. Now I can take better care of him.

Every little inchstone goes a LONG way in improving Nathan’s, and our family’s, quality of life. Every drop of strength, every drop of control over his body, every muscle he masters, every reflex he overcomes, every new sound he can make – HUGE!

So if this means living out of an RV for weeks at a time, flying all over the place for various therapies, making immense sacrifices and effort … we will do it. We will do anything that gives him that little bit of extra control so he can access the world around him. So he can understand and express himself. So he can enjoy his life that much more. So he can stay healthy and happy.

He’s so worth it.

Living life…

The other day I went out and forgot to bring diapers with me. There was a kid’s bathroom at the mall with a diaper dispenser for 50 cents. So I bought a diaper for Nathan at the dispenser.

Except the diaper was newborn size. When all you get is lemons, make lemonade!

We’re trying out new AFO’s for Nathan. They are super supportive, a great color, and he really likes them!

Now if only we can get them to work just like AstroBoy’s boots!

Sometimes we forget to feed Nathan so he has to feed himself. This was his chosen meal for tonight.


He was sure hungry.

On a serious note – this is the FIRST TIME EVER Nathan has entertained himself. My mom found this pen toy (bless her!!!) and gave it to him, and he just LOVED it! This is the first time since he was born that I’ve seen him really into a toy! Usually when we give him a toy he lets go right away (it’s a developmental milestone to hold on to toys, immature brains give the signal to release as soon as you put something in their hands). With this toy, he held on for at least 30 minutes, and he kept bringing it up to his mouth with great control and dexterity.

Talking about WILL – this was an amazing example. He WANTED the toy in his mouth so he figured out a way to hold on to it and to bring it up to his mouth. Talk about serendipity :-)

Notice that around 15 seconds his hand goes all the way down to his lap and he brings it all the way up to his mouth – a FIRST! Thank you God/Buddha/Allah/The Universe!!!!

PS. For the record – today we started giving Nathan b12 shots, prescribed by his DAN doctor. He’s also back on his Gtherapy. We’re almost back to “full on” with him, in terms of his diet and supplements! More on this tomorrow as we have an appointment with Dr. Kenny!

Standing by the fountain

Nathan LOVES this fountain:

And some cute pics of our afternoon:

Look at The Head!

Again, may not seem like a lot but, to me…WOW!!!!! He is sitting up! Holding The Head in mid-line (mostly)! WOW! He is indian sitting, using his arms slightly for support (not much), and holding up The Head!!! I can’t believe I just typed that!

I’m so excited. Today, all day, I noticed that he seems to have more control over his head. When I carry him around and do stuff with him, my default is to always support the head…but the last couple of days I’m finding I don’t need to as much! I can support him by the waist and he is mostly keeping up his head and trunk! The trunk is quite slouched still, but he’s trying to hold it! It was just a couple of weeks ago that I posted about my dream of seeing Nathan holding up his head…now I got to see him do it!

Of course it’s not consistent, but he lasted several minutes – about 10 – and once it’s been done, it can be done again! Go Nathan! I’m so proud of you!

On another note, you may be wondering why he had that sorta glazed, dazed look. Well, we did absolutely positively NOTHING today. Neither of us made it out of pijamas (hence the crazy hairdo). It’s the first day since we got to Chile where we genuinely do absolutely nothing (well that’s not entirely true, we did take scruffy Lucky out for a few walks in our pijamas). It was lovely. But we mostly watched TV so he had that sorta hypnotized stare that he gets when he watches more than an hour or so of TV, which is why I generally don’t allow him to. But…it motivated him to hold up The Head! Wohooo!

I leave you with a couple of pictures:

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!

Nathan prop sitting

I took this video of Nathan prop sitting yesterday while reading a book. I filmed him for about a minute, but he sat up and read the book with me for much longer! That’s the 3rd time he does it!

I filmed him while turning the pages so the angle was a bit off, but you get the idea :-)

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.

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.

Just Playing

This was Mr. Nathan’s game while we waited at Dr. Kenny’s office:

Perhaps some of you may wonder – what’s the big deal?  He’s pushing a button!

The thing is, Nathan has never had the strength or control of his arms to push a button.  Now even though he makes it look easy in the video, the button required a bit of strength to push.  So, perhaps it’s not a huge deal.

But on this road cemented with inchstones, every little one counts!  And we celebrate every thing he can do.  Which is one of the joys of Nathan’s world – very silly things bring all of us a lot of happiness and excitement.

Wordless Wednesday

Not quite wordless – I AM BURSTING WITH PRIDE!

(this is an inschstone!)

And the real question is…

…how’s Nathan doing???

I’ve sorta hijacked the blog with all my useless senseless questioning, so I figured, let me get back to the star of this party and share a little update about Mr. Nathan.

I’ve gotten many calls and emails saying…Marcela, don’t give up on him!

Little do you all know that giving up is just not an option for me. So while things seem to have slowed down and we’re not travelling halfway accross the world looking for miracle cures, we are actually very very busy.

Here’s what Nathan’s up to these days:

He’s getting the following every week:

Occupational Therapy: twice
Child developevelopment: twice
Yoga: twice
Speech: language once, vital stim once
Vision therapy: once
Physical therapy: 4 times
Horse therapy: once
Osteopathy: every other week.

In between all that, we are doing the Reach program and working with him on the Lite Gait and working with him using communication software on the computer.

We’re also going to an acupuncturist / herbalist tommorrow to see if this can help him.

I know I know, it’s a lot. But just think of it this way. A typical child is on the move constantly. They don’t stop and say, whew, this is too much..they just go go go, till they crash during their nap. We’ve had Nathan’s cousin Gabriel at our house every afternoon for the last few weeks and I know this to be true.

So what we’re doing for Nathan is replicating what a normal child would be doing. We’re keeping him moving and active and stimulating him in various ways, just like a typical child would do for himself.

Medically, he’s great! Very healthy, very stable. He hasn’t been sick since early February. We are thrilled at how healthy he’s been.

Emotionally, he’s developing normally. He’s been really whiney lately, and we figured out he’s rolling right into the terrible two’s. He wants to do what he wants to do when he wants to do it. I’m having to do a little bit of disciplining, believe it or not. I have to look him in the eyes and tell him we can’t do everything he wants when he wants it. Really all he wants is to be held and to watch TV. Obviously, this is not happening. So sometimes he complains when we have him going from event to event. No, it’s not tiredness. The moment daddy gets him he’s a bundle of energy. Trust me, we’ve tested this. He’s just adamant about only doing want he wants to be doing.

We’re trying to get him in situatiosn where he can hang out with other kids more often. We also take him out every afternoon at four to the park or mall or something so he can get out and have some fun.

As for his overall development, here are the changes I’ve noticed from the last 2 months:

* He’s smarter – his cognition seems greatly improved. He seems to understand concepts better, as well as language. He is able ot follow instructions (with limited movement initiation) and really shows signs of heightened awareness and undertsanding.

* He’s eating better – he’s now eating very very thick foods. We still blend his food, but we leave it very chunky and thick. He is chewing and swallowing amazingly well.

* He can drink from a straw – yes, he finally learned! The week after we came back from stem cells he figured out how to suck through a straw, now he drinks from one every day. (to all of you non-special needs world readers, this is HUGE!)

* His hand control has improved – he’s got a lot more control over his hands and is able to use them more effectively. He can reach for my faith and touch my eyes, nose and mouth. He is able to lift up his hands and play with toys.

* Improved head control – if I tell him, fix your head Nathan, he will lift up his head and hold it in midline. Generally his head control is better, not really there yet, but better.

* He can bring his hand up to his mouth and suck his finger – this is HUGE for Nathan, he has been trying to get his hand to his mouth since he was born. He can’t do it completely against gravity yet, but if we prop it up near his face, he can bring it to his mouth.

* He’s drinking water from a bottle. Before thin liquids were too hard for him to swallow, now we can give him water from a bottle and he can drink it without choking.

* He knows some body parts – eyes, ear, nose, hair

* He’s prop sitting and side sitting really well – he can hold himself in these positions for a while now.

* He’s a whopping 23 pounds now! He didn’t really gain weight for a year, now he’s gained close to two pounds in the last couple of months!

* He’s doing great at making choices and deciding if he wants to read one book or another, etc.

I’m sure if I thought hard I could come up with other things, but these are the ones off the top of my head. We are really so proud of him for all these inchstones. There couldn’t be a prouder mama!

In terms of equipment, we’re working on getting him several things:

Ormesa Bug Wheelchair

Prime Engineering Walker

Hart Walker (the one in the 4th and 5th pictures below – the one he’s in is a demo unit)


Now, for the horrible experience of the year contest submission:

Today, we had Nathan in the lite gait (the one in the 1st pic below) at home for his walking therapy. It’s really one of the first times we do this at home. We tried a couple of times before but gave up after a few seconds. We figured it’s time to really start this and do it at home every day.

A couple of minutes into it Nathan starts crying. But since we’re in the “Disciplining Nathan” stage and that means he sometimes has to do things he doesnt’ want to do, we kept going. He continued to cry.

All of a sudden, Nathan starts stepping and stepping and stepping. I almost fainted with joy. He took about 30 steps in a row, cross pattern, big, perfect steps, without stopping. We have NEVER seen more than 4 steps in a row. I started doing the victory dance.

Then I see Owen go pale and he says, STOP IT NOW. His tone freaked me out so I pulled the plug on the treadmill. I look down and I see blood. I almost fainted. His poor little toesies were bleeding!

I don’t know who was crying louder, me or Nathan (actually, I think he was, but I was close). I guess since we let his feet drag a little to stimulate him to take steps, his toes were rubbing against the treadmill and it his feet bleed. So he was stepping to keep his feet from dragging and burning! I was mortified, horrified, and guilty as hell.

Of course we spoiled him rotten for the next four hours, we took him to al his favorite places and bought him chocolate covered marshmallows and other treats. But no amount of sugar can spoil my feeling of guilt.

Anyways, the cool thing is we know that he CAN step if enough torture is inflicted – JUST KIDDING!

Well, that’s it for my “How’s Nathan” roundup. In one sentence, he is well, happy, and inching onwards and upwards.

And here are some cute pics to prove it:

And a cute video:

Thank you for checking in on the monkey man!

Learning to Walk

This is the greatest, most awesome walker I’ve ever seen.

This was the first day he tried it. I’ll take another video tommorrow to show you how much better he’s doing in it!

And there are some very cute PHOTOS HERE.

Nate is doing great!

I’m thrilled to be writing this update.

Last Wednesday, Nathan started saying words! I didn’t want to post until I heard him say it again, but I’ve heard him use words every day for the last 3 days. You can imagine how excited we are!

First he said “agua” and looked at the cup of water. He was definitely asking us for water. Then on Thursday, he started saying “papa” and looking at Owen. Yesterday, we took him to PT and she said se heard him say “eyes” and “nose” when she was working with him. Afterwards we went to hippotherapy and he said “horse” and “go”. Yesterday, I showed him an elmo and asked him to repeat it and he said “elmo”.

Of course it’s not perfectly or completely clear – no baby starts speakig completely clearly. But he is definitely saying the words and doing it purposefully.

Of course we are beyond ourselves!

Also, since he hadn’t seen his regular therapists for about a month between the stem cells, intensive therapy, and osteopathy, we got some reports from them on Thurs and Fri. THey are so impressed with what they’re seeing. I can’t remember everything they said, but I heard things like “his hands are reaching and grabbing things with much more control and accuracy,” “he is using his left hand more”, “he can support his body much better in side sitting”, “his head control is much much better”. These are just a few of the things they said, there are more!

One thing I’ve noticed that I’ve been really happy about is that he is wanting to move more. Yesterday I went to pick him up from his crib in the morning and I found him horizontal, not vertical. I couldn’t believe it! For the last 20 months, wherever I put Nathan, I find him in the exact same position. He is starting to move! Also, when I have him on the incline plan, he is manipulating his hands better and is getting closer to being able to army crawl.

I think the stem cells have been a HUGE part of all this progress. I think the stem cells made his brain a hundred times more effective. Then, intensive therapy was very helpful in helping him become stronger and to understand that he can control his body – they worked hard on breaking negative patterns, like arching and extensor patterns, and teaching him to control his movements. He got a lot stronger during intensive therapy, particularly in his legs – he can support his body weight a lot more than he could 1 month ago. We are so happy with the intensive therapy that we are going back to another session in just 2 weeks.

Finally, osteopathy is helping him a lot too. This one is hard to describe how or why, as I still dont’ really understand what they do. But I know it’s helping him, I just don’t know exactly how or why.

It’s been a busy time for us. Nathan’s doing wonderful through it all, but it’s been a bit harder for me, as there’s s much running around involved. I’m not getting much time to work which of course is important so we can afford all these treatments. Even through all the exhaustion, I feel happy and grateful that we’ve been able to offer these treatments to Nathan.

I’ll post some pics and videos soon (my computer died so I’m using another one while mine is fixed).

Thanks so much for everyone that keeps checking on us and praying for us!

More on Stem Cells

Usually when we go out to dinner with Nathan we don’t worry about moving things out of his reach, like most parents of toddlers do. We leave the fork, knife, plate, cup right in front of where we’re feeding him. Last week we realized it was time to start changing our ways. As we were eating dinner, Nathan reached out, grabbed a cup of water, and spilled it all over himself and his dad! We were ecstatic to have this normal parenting experience. It was a first for us. Until now, Nathan has never been able to do this. He’s never been able to reach out and grasp objects. Until now, his hands have always been kept in tight little fists, and if he wants to reach for something, he instead contracts and brings them closer to his body. That was before he received stem cell therapy.

In the last two weeks, Nathan has showed us many new and emerging skills.

Nathan is now able to reach for and grasp objects. He keeps his hands open and relaxed most of the time. He is now able to coordinate reaching for an object, opening his hands, and holding the object in his hands.

My mother has been trying to teach Nathan how to play with a toy xylophone since he was about 6 months old. He has never been able to do it. On Saturday, after all these months, Nathan can hold on to the little stick and bang the keys!

His speech therapist was shocked when she worked with him last week. Usually, when he eats something, over 50% ends up all over his face, as he has a tongue thrust motion that makes the food come out of his mouth. When she fed him last week, only about 10% spilled! He is chewing the food better, moving it around his mouth, and moving his tongue better. In the past he ate with a suckling motion, like a newborn. He now knows that he has to chew his food and move it around his mouth before he swallows. He is barely gagging.

I heard him say “more” 3 days after we came back from the stem cell treatment. That’s the first full word I hear him say! He’s also babbling and saying lots of new sounds, like “ma” “ba” “da”. People have told me they’ve thought they’ve heard him say words like “dog” and “elmo”, but they are pretty unclear so I’m not going to claim he’s saying words just yet.

At physical therapy, he is doing lots of new things, like controlling his head better, controlling his trunk better, and better strength and control when standing. He is learning to pull his head down instead of maintaining it hanging or arched backwards. He is learning to fix its alignment when his head falls off to the side. He is also kicking his legs better when he is prone on the ground and is very close to learning how to army crawl! When he went to hippotherapy, they couldn’t believe how well he was sitting and holding up his head and trunk; usually he requires “max assist” and his body needs to be fully supported, but at his last appointment they just had to hold him from his lower back.

Finally, he is learning words and concepts very quickly. After many months of trying to teach him body parts, he now knows eyes, nose and mouth. If someone puts their face close to his hand and asks him, “show me my nose” or “show me my eyes” he can put his hand on the appropriate body party.

We have seen all these changes just 2 weeks after the stem cells. We are excited to see new developments from this treatment, and from subsequent treatments!

Stem Cells – improvements

Here are a couple of videos that I took tonight showing some of the improvements:

Latest Greatest

Our latest greatest is that Nathan is learning to fall asleep on his own!

Until now I had to rock him to sleep in my arms, wait until he was totally passed out, then put him in his crib. This week we decided to try and have him go to sleep on his own.

The first night he cried for about 15 minutes, then fell asleep. From the 2nd night onwards (today is the 6th), he only gave 2 or 3 screams, then he went to sleep.

This is pretty exciting for us as it means he is learning to self-soothe a little bit, plus he has the capacity to understand boundaries and to learn these types of skills.

He has been consistently sleeping through the night for a few months now too!

Just wanted to share the great news.

We would also love to ask people to pray that his gross motor skills will improve. He has shown some improvements but still has a hard time holding up his head, sitting, rolling over, etc. Thanks so much for your prayers and support.

Nathan playing with Switch Toy

Today was a glorious day.

I saw Nate do 2 things he’s never done before.

1. He turned OFF the bathroom light! After his bath, I showed him the light, and showed him how to turn it off. He only had to see me do it once to know exactly what he needed to do. It took him a couple of attempts and then he did it! He was so proud of himself. I could tell he understood the relationship between reaching out and turning off the switch, and the darkness in which he found himself. Next I’ll teach him how to turn it back on :-)

2. He played with a switch toy all by himself! You can see for yourself:

I was so excited I took another one:

I am ecstatic, it’s the first time I can leave the room for more than 1 min. because I knew he was occupied, so it gave me time to run downstairs to grab his bottle – no crying or complaining! Glory Hallelujah!

Here are some other cute pics:

Ma Ma!!!

I just wanted to say that on Sunday, Sept 9th, while we were walking to the White House, Dorje said “Mama” twice!!!

It was the most exhilarating feeling to finally hear him say mama.

Of course he hasnt’ said it since, but I know he can and will again.

Just wanted to share.

Funeral and Therapy on Horseback

This Saturday was a sad and happy day. We had my uncle’s funeral. It was difficult and painful for all of us, but at the same time we saw it as a celebration of a wonderful life and peaceful passing.

Dorje dressed up in his new suit that he got from his girlfriend Presley on his birthday:

Then we all went to my aunt’s to support her and my two cousins:

We also figured out an incentive to get Dorje to try walking…SODA. It’s not something we plan to give him again, but for this one time, we at least got to see what he can do when motivated:

Then Sunday he started his Hippotherapy program. It’s therapy on horses. He loved it! We are going to start taking him twice a week. That’s 12 hours of therapy a week but I think he can handle it.

Tommorrow (Labor Day) we’re going to Disney, so I’ll post more cute pictures soon!

Happy Labor Day everyone!

He can suck his thumb!

Nathan can now suck his thumb by himself!

Before he was very very rarely able to get his hand up to his mouth.

Lately, he is doing it more and more and we are so excited. Also, before, he used to suck the side of his fist, as he rarely opens his hands. Lately, he’s been enjoying his finger so much he’s been opening his hand in order to play with his thumb. Why is this so significant? Twice already we’ve been able to have him lay down for a few minutes without crying!

Since he has no mobility at all, usually when we lay him down on his back he can only resist about 3 seconds and then he starts crying, and if we don’t pick him up within one minute, he gets hysterical. But twice already he’s been able to lay contently while sucking his thumb for a few minutes! We hope this trend continues :-)

His attention span has also increased and he is enjoying reading books more:

He is starting to play with his hands a little bit more:

And finally, he is enjoying playing on his side. He can hold this position for a little while and will reach out and try to grab and play with toys while on his side:

UCLA intervention program

We are SOO excited. Today we took Nathan to UCLA to have him evaluated for their early intervention program.

Of course the therapists fell in love with him, and he loved it as he was the center of attention for all of us.

I was thrilled at what I saw. They seem extremely knowledgeable and have all sorts of equipment and ideas on how to maximize his potential. They commented on how aware and smart he is, and the fact that the main problem is the connection between his brain and his body. He knows what he wants to do but his body doesn’t cooperate. So they were talking about finding ways of helping him experience lots of things to stimulate his cognitive growth while training to improve his movement problems.

All in all it was very positive and I left in tears feeling that we’d found the right place /program for him. Unfortunately we have to give up having Nate’s child development specialist Dena coming to our house, which I am bummed about as she is wonderful. But it was the only way to get the funding through Regional Center.

We are going to take him there twice a week and they are going to do a little bit of PT, OT, child development, music stimulation, aquatic therapy, and anything else that they have available. They have lots of equipment too and are going to give us advice on what equipmen to buy, positioning, helping him improving his oral skills, etc.

I will post photos next time we go.

Here are some pictures of the last few days. We went camping last weekend but I forgot the camera. So sorry no pics. But he enjoyed being outdoors a LOT and didn’t mind sleeping in a tent with Lucas and Lola and mom and dad. What a trooper.

At the circus

sad clown

At the audiologists office. They said he may have some hearing loss but it’s hard to determine as he still has an ear infection.

new feeding chair

practicing crawling!

Swinging all by himself!

Nate’s head control is getting better!

We put him in the swing and he sat all by himself!

He also practiced walking:

And he played with a balloon:

He also watched the sunset at the park:

But most exciting is…he was able to bear weight on both arms, in crawling position, for about a minute or two! Go Nathan!

He sat by himself for 2 min’s!

Yesterday we went to the park and Nathan sat by himself, with his hands on the ground, for like 2 minutes!!

That’s by far the longest he’s been able to sit and support himself.

Go Nathan!

Just life

Nate’s had a good week.

We’re seeing tiny bits of progress.

He tries to walk (he has no stability but does try to step!!!)

He has a *little* more stability sitting in his bumbo chair:

He loooooooves sitting on dad’s shoulder and looking at the world from up there. He tries to hold his head up and is somewhat stable.

He’s holding on to toys a couple of seconds longer, and tries to put them in his mouth.

He reaches out and makes the ball spin

He absolutely loves hiking and sitting in his baby bjorn while he observes nature. He usually kicks a lot and tries to hold up his head.

We just got him the feeding chair and it’s great for him! I didn’t get one before thinking he wouldn’t have enough stability. But he does sit very well in it and will even play with the toys on the tray.

We got him a vestibular swing and he loves it!

He got a chance to play with both grandmas on Saturday

Owen and I got to go to a wedding last night while my mom took care of Nate:

And my absolute pfavorite photo of the baby:

First time sleeping through the night!

Last night was Nathan’s first time sleeping through the night.

Definite inchstone!

I was su surprised I kept checking on him every 30 minutes to make sure he was still breathing.

We hope it will happen again :-)

Milestones / Inchstones

Last night someone asked us, “What milestones has Nathan reached?”

I laughed. Ours is a different world. Milestones is not in our vocabulary. “We don’t keep track of those in this house,” I answered with a smile. Owen tried to respond. But nothing came to mind. Milestones is such a big world. You think of miles. You think of big things, long distances, huge accomplishments.

Things like sitting up, crawling, walking, self feeding, potty training. Amazing things like that.

But if we answer, Nathan hasn’t met any milestones, we wouldn’t be doing him justice. We wouldn’t do justice to how hard he tries, how hard he works for every little thing he achieves. We know he’s made progress. He’s doing so well. But he hasn’t met any milestones.

So for Nathan, we established a new concept.

Say hello to InchStones.

InchStones are the building blocks of milestones. They are those little tiny things that we can’t take for granted.

Inchstones are things like:

Nathan’s hasn’t been to the hospital in 3 months!

Nathan put his hand in his mouth by himself yesterday!

Nathan sat by himself for 15 seconds!

Nathan sat up straight for 1/2 of a second.

Nathan took another breath and lived another day.

So we’ve created this new category in Nathan’s blog. Here we will keep track of his InchStones. We will record tiny things he does, tiny things that mean the world to us.

Keep an eye out as one day soon I am sure we will even post a milestone or two :-)