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!

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