Laughter Storms and Giggle Fits

There have been some dark days in Cyrus's life. Usually I measure them by how long it's been since he last smiled.

Our longest stretch was this last winter. From November 5th to January 11th there was not a single smile. During that time, I began to doubt I would ever see a smile again! There was this one picture, taken in early November that I loved! But I also hated it as evidence of something that he had lost. And that smile in January had to keep us tied over until February 20th. 

But a new medicine (clobazam - also known as Onfi in the US) brought them back. And smiling and laughing are a much more regular occurrence now. But usually they involve wild acrobatics of being swung around, thrown in the air, or dropped onto the bouncy bed. 

Cyrus has had a string of some not so happy weeks. He's been a little hoarse, very sleepy, and yesterday he threw up and had a spike in seizures and then stayed up until three am grinding his teeth together. 

I can also tell you that until today, the last time he had smiled was May 7th. 

Today, we have completely broken that trend! He has been so happy today! His voice is back and he has been smiling and laughing all day. He has laughed socially! And laughed spontaneously on his own while in his own world rolling around on the floor! We converged upon him immediately to share and multiply his joy. It was a pretty cool moment. And an even better day. 

__________________________________________________

Support Cyrus

"First Words"

At some point in my life I asked my mom what my first word was. She told me that I was at a doctor's appointment. The doctor walked into the room and according to the story, I smiled at her brightly and said, "Hi!" clear as day. My mom was shocked!

Of course that might have been because I was a scant two months old, and had never made any kind of coherent sound ever! I probably also had absolutely no idea what I was saying. It was just a beautiful and happy accident! 

And she has no other stories. That was the most memorable moment for her. 

At three months old, Cyrus stumbled onto some accidental words. He liked hard g's and would fall into "gook" and "guru" in-between the "agoo"s and "aroo"s and we would joke that he was a racist baby (and we'd have to train him out of that) or a spiritual baby (and hopefully he could impart his wisdom to us!).

Since September, Cyrus seems to have lost his consonants and really only makes vowel sounds. But today, we've had some happy accidents. He apparently said "ow!" when Daddy was putting him in the chair, which is ironic because he hates the chair! Daddy was not a fan...

And while I held him he kept spouting off "Oh? Oh? Oh?" It sounded just so much like a question each time. And it was just the coolest moment because he was almost silent before I picked him up, but when I held him he looked at me and just kept talking! And when I had to put him back down he got pretty quiet again. But then ten minutes later, I picked him up again and he jumped straight to an "Ooh," followed by a sharp and happy, "Oh!" 

Seemed very deliberate and I've never really noticed him doing this before. It was also made all the more adorable as the little guy seems to have a sore throat and sounds a bit hoarse. I guess even non verbal children can lose their voice. But yay for linguistic and/or social development regardless! I'll take whatever I can get! 

Now he's trying to bury himself in the floor blanket. He's been doing this all week! I believe his master plan is to turn it into a swimming pool with all this excess drooling. 

Sleep Experiments and Teething

So after three nights in a row of Cyrus staying up until somewhere between 2 and 4 am, we came to the conclusion that we needed to intervene. So we started limiting the naps. It did cost on a few extra seizures first thing in the morning (when the meds have worn off) and late in the evening (when he's super tired) that were a little more intense than normal and we got to see some super irritated pronounced eyebrow ridges after being awoken from a nap!  But after two days he stopped having these and seemed to have adjusted completely! With bedtimes around 11:30 pm! Woot!!

And that lasted about a week.

Then he started teething again.  And now he wants to go to bed at midnight (most of the time), but the poor guy just can't sleep. He's whimpering and crying or chewing on anything he can get his... well, teeth on. And whatever he wants to chew on we have to hold in his mouth for him. Even the teething pacifiers only stay in for like 20-30 seconds before he needs help getting it back. He's not really sucking on it. He's chewing on it!! Which doesn't help it stay in place. We've tried teething tablets and oral gel, and they work for a few minutes. And if he's super tired they even maybe work long enough for him to fall asleep. We tried a teething necklace too, though sadly I've not noticed any difference. It's cute on him though! It's got the amber and every third bead is amazonite, which is supposed to "calm the nervous system" (shown in next picture). Seemed symbolically appropriate.

But anyway, I find myself wondering why the pain seems so much worse in the evening! I mean, who thought that was a good system? He's fine during the day, but the sun goes down and suddenly he wants to chomp on everything and the crying is so pathetic sounding... It makes me sad.

To make matters more interesting, he's been having the more intense breakthrough seizures again. Though really I still think it's because of the disrupted sleep patterns caused by teething! But his third tooth just broke through today! So hopefully, we'll have a more peaceful day or two at least before the fourth tries to push its way out. And if they insist on only coming in one at a time, hopefully the rest will wait until summer, so we can be nocturnal together!!

In other news, Cyrus was assessed for his equipment needs today. And we have received a prescription for a squiggle chair with both a kimba stroller base and high and low seating base (His will be green!). Apparently the chair will transfer back and forth between the two bases. The stroller is way better for getting around and the high and low seating base allows us to bring him low to the ground so he can be social when we're on the floor, or raise him high so he can sit with us at the dinner table, and can be used as his high chair for eating. Super excited about these, but apparently it may take 2-3 months before the order is complete, so we have to keep making do with our infant stroller. They are also recommending a bath chair, but that is a lower priority at the moment.

After his assessment, we went to the Pulgas Water Temple and took lots of cute family pictures. While we were there it occurred to me that Cyrus has never had the chance to roll around in the grass, and seeing as it's been recommended to expose him to high sensory experiences and sensations we did just that! He was definitely squirming around on the grass - I'm not sure he knew what to make of it. I found his reaction amusing. Next goal is to take him to the beach!! So we can experience sand! And waves!

__________________________

Support Cyrus