It has been a month now, Nisarga is super clingy. We had gone to stay in Virar when my mother-in-law fell ill, and ever since then, he simply won’t let me out of his sight.

His medication also doesn’t seem to be working any miracles, and the dystonia is more pronounced. He has increasing trouble falling asleep. His body just won’t quieten. Arching, twisting, jerking… well… not as bad as that sounds, but he is constantly moving. All. The. Time. Day and night and even in light sleep he can move enough to wake himself up.

This also means that he is spending tremendous amounts of energy, and no matter how much he eats, he isn’t putting on weight. I feed him the regular chapati sabji and stuff whatever we eat, and keep giving him something to nibble as often as he wants. High calorie somethings.

I used to feed him infant food after his meals, so that he was solid full and not just tired of chewing. Now he doesn’t want that anymore. He likes the “real” food more. While that is good, now I’m wondering what I can do to make sure he doesn’t lose weight…

But my real concern is the dystonia. Just had a marathon three hour session trying to get him to sleep. He was sleepy – ready to sleep for three hours, but just as he would fall asleep, he’d jerk, or twist, or arch his back, and we were right back where we started.

The new medication also seems to have added to his constipation, so that becomes yet another reason he won’t sleep.

Here is a video of him generally doing his thing. He loves to be in this passage for some reason. The way he uses, or rather doesn’t use his limbs as far as possible worries me. With the Feldenkrais, he has learned to use them some, but needs reminded, without which, this is what he does.

Frankly, I don’t think the Bexol is working. Let us see what his neurologist says.

In other news, he is becoming addicted to his medication, which I think is a good thing. We never miss or delay a dose. Seeing as how he is supposed to take it long term, I don’t see this as bad at all. Breaks my heart to see the little guy cranky and stiff and wanting medicine – of all things. After the first few days, he has understood it helps him so much, that I can put the tablets in his mouth, and he simply chews and eats them 

Reality is coming home to roost. Nisarga hasn’t made any significant progress, his dystonia is getting more troublesome, and I am increasingly exhausted.

The only bright spot is somehow, I found the energy to begin doing the Feldenkrais sessions with him again for the last two days, and they are still helping him. I think I need to quit worrying about how much I don’t know, and focus on learning and doing all I can.

To make a long story short, the water storage tank at home overflows when some conditions are met, and those conditions got met today. The result was a big puddle of water in the passage outside the toilet and bathroom.

This is the passage. The area before Nisarga, near the tub of washing gets totally flooded. As it did today. With the mother-in-law busy in the kitchen, I decided to mop it up before Nisarga got into it. I started mopping, and as usual, Nisarga creep-raced out of the bedroom. Before I could put down the mop and wash my hands, he was well into the puddle of water, staring at the water in amazement.

I was like… since he’s already wet, why not? let him enjoy this new experience too. So I splashed the water a bit. AND he broke into laughter. He immediately started splashing the water. This is new – this instantly understanding something. I let him play for a bit and took him back into the bedroom to get him dry. Not a chance. He wanted to go right back there into the fun.

So I distracted him by talking about it. I asked him how he played in the water, and he made the splashing action!!!!! This is beyond new. This is really communicating something not immediately happening. Wow!!!

Realizing that he wasn’t going to quit pining for the water, I ran him a warm bath, and we had a splashing time and I thoroughly tired him out. Right now, he is with his grandmother, having dinner, almost asleep

Earlier in the day, he had started reaching out for things beyond his reach. He had started answering “How does Nisarga sing?” asked by Raka with “aaa…aaa…aaa”. By the afternoon, he was answering that if anyone asked.

He is already using his body more and more, using his hands to manipulate objects better, and using his legs far more than before. The stiffness is decreasing, though he still creeps with them stiff straight, as you see in the picture.

One week post the doctor’s visit, and the increase in the dose of Syndopa and the new medicine… this is where we are. I am so thrilled, I can’t stop grinning. After over a year of struggling all alone, listening to all the wise words about how his problems were my fault and I should not neglect him, etc, finally it is clearly visible that they weren’t. The medicine is distinctly helping.

No words to say how big a load off my chest this is. If these are the changes in one week, I am confident that with the Feldenkrais and the medicine, we’ll be fine.

Our bedroom has a broken lock for many days. It can be opened from the inside, but not the outside. The rule is to not close the bedroom door when no adult is inside. Particularly if Nisarga is in.

Today, the husband returned home late, drunk, and called me out of the room to talk. Knowing that it was a guarantee for a racket if we remained there, I went. A minute later, he went to the loo, and saw the door open, and reflexively closed it.

The minute he did it, he realized. He tried to open the door, it wouldn’t open. He came and told me.

We immediately started hunting for tools to break open the lock – ideally a screw driver. Couldn’t find. All through I was fuming at Raka and dreading that Nisarga would wake and we wouldn’t be able to reach him.

I found a nail cutter and tried using the small knife in it to open the door. Of course, that wouldn’t work. returned for more searching. Praying that Nisarga wouldn’t wake up.

In the meanwhile, Raka wandered to the kitchen and got a spoon and went at the door. Noisy stuff happened and I cringed, but I knew going there to pick a fight was no use. The spoon fell a few times. Nisarga is particularly alert to metallic sounds, and I hoped that he hadn’t heard and woken up.

Approached the husband, and he was using the spoon like a screw driver. Good thinking. More importantly, it was working. One screw out, two more to go. He started explaining it loudly to me. I hastily went back to the drawing room. If we talked, Nisarga would wake for sure.

Ten minutes and some noises later, Raka swayed back into the room. I was smoking enough to make my eyes tear – or was it me being a mom?

“The door is open” he said. “I may be drunk stupid enough to close it, but I opened it also. You should trust me more. Is there any more of that vodka you are having?”

I had already rushed halfway to the bedroom to check. The door was indeed open. Nisarga was sleeping. All is well that ends well.

“You are totally useless in an emergency. You should trust me more. I care about him too.”

Indeed. I had forgotten in my blame, but that is true.

These last few days, Nisarga has been absolutely cranky. He has a cold, plus is teething a pre-molar. One of the pointy tips of the tooth is out, another is under the surface. That must be painful.

Painful or not, he is cranky, clingy.

One blessing is an accidental discovery:

When Bhupen Hazarika died, I played “Manush Manusher Jonya” for him on headphones, and he was absolutely fascinated. He heard it several times, including tolerating the headphones. So, grabbing that idea, I played it again, and it works!

Music has always been a solution with this guy

So, I have now heard this song gazillion times. Good thing it is such an awesome song, or it would have been torture. I love it too… still not tired. What an awesome heart to heart song! Maybe that is why Nisarga likes it.

So after over two years of experience, I consider myself as somewhat experienced at putting a baby to sleep. At least this particular baby.

There is a formula. When it is time for bed and I see eyes drooping, pick him up and let him settle to sleep. If he won’t sleep, check hungry, thirsty, uncomfortable, overtired. In that order for Nisarga at least. By the time you reach the end of the list, the little guy is asleep.

Not today. Checked all. Double checked. Triple checked. No go. He was crying, sobbing clinging. Rocked him for two hours flat. Fed him once in the middle of it. No go.

Shoulders aching and frankly fed up, I put him down praying that he wouldn’t start crying, so that I could at least visit the loo.

As I lowered him, he started whimpering. Resolute, I put him down anyway. He curled on his side and slept!!!

Then what were the last two hours all about?

So, Nisarga has discovered that there is a whole new exciting world out there. And he wants to go out. out. out. All. The. Time.

Bring him back from a walk and he turns right back to the door.

To summarize since he woke up at 8:15am today (and it is 9:30am now)….

• Woke up, smiled, pointed to the door. So I took him there, we rang the door bell a few times, rode the lift to the ground floor and back.
• He wanted to go out. I took him along to buy milk.
• He wanted to go out. We rode the lift down, went to the gate of the building, watched cars drive past.
• He wanted to go out. We went and said “Hi” to the neighbour
• He wanted to go out. By now, his grandmother was free. He is taking her out just now as I type.

This boy definitely inherits both genes and impatience from both parents. God save us :p