Our New Normal

Cyrus has continued to do incredibly well, somehow remaining seizure free for three weeks now! And as a result we have been able to benefit from his personality coming to the surface. As you know the first few days were incredibly happy - I think that coming out of his seizure fog, he was just in awe of the whole world!

Since then, we've also gotten to see the other side of the emotional spectrum. He's more opinionated in general. He seems to hate his medicine again, which makes administering it three times a day super fun. And he will sometimes object the moment we stop playing with him or put him down, even though our arms are throbbing with overstretched muscles. He constantly wants to engage and he's so cute he's just impossible to resist.

Last week we took Cyrus to a sensory and social class. The first hour is spent in circle time, designed to promote sensory play. This involves playing with toys, singing songs, and socializing with other children in the class. And despite getting up at eight in the morning (which is four hours earlier than normal) he did well. The best moment was when he turned to a girl sitting next to him and they locked eyes, maintaining eye contact for a solid 15-20 seconds. I have never seen him do that before. The second hour is devoted to motor play. Here, the children get to play on swings, ball pits, just rolling around on mats. His favorite was definitely the trampoline, which was enough to send him into constant giggle fits.

The rest of the day however, was ruined after getting up so early and exhausting himself in the class itself. He became king cranky pants and would not stop crying. Even once I got him down for a nap, he woke up ninety minutes later almost as angry before he went to sleep.

And you know what?! It was an exhausting day, but even then I couldn't wish for anything different. Knowing what it's like when your child doesn't cry - I'm telling you this is better! So if he needs to be held and soothed and rocked, we will do that. I'm getting really strong! The constant squats don't even phase me now! And when he is calm again when being held (though I cannot put him down without his face crumpling into tears) we're simply going to cuddle up and settle in with Netflix!

This week has been better. After confiding our going to bed at a reasonable time troubles to our pediatrician, she gave up some melatonin. We give it to him 30 minutes before bedtime, and it's magic!! He falls asleep naturally despite the choreiform movements. Cyrus has gone to bed by eleven for a whole week in a row! (Though mommy has yet to adjust to not staying up all night...) With the better and more consistent rest, the chorea has lowered in intensity and his mood has been more consistently on the happier side and life for all of us feels more sustainable.

Grandma is visiting this week and was willing to babysit, allowing Kyle and I go on a date for like the second time in six months! Yay!

The Power of Recognition

As I've said before, one of the questions that they ask on the developmental surveys is, "Does your child recognize you?" When I first read that question, I wondered how one would be able to tell. I mean, he was four months old! An infant! He can't say, "Hey mom!" How do others know if their baby recognizes them? And while I was sitting there agonizing over how to answer this one question (out of like fifty many of which were equally baffling), I thought of a moment just a few weeks prior.

I had gone to his crib to wake him up only to discover he was already up! And he looked right up at me, we made eye contact, and his face lit up into a smile. It was so cool!

I described this to the developmental psychologist, and she patiently explained that was exactly right! And immediately checked something off on her chart.

The only thing was I had only ever seen him do that once. And that one time, was before he ever had a seizure. But I did take comfort in other small things - like the fact that I could sooth him when he was distraught or teething. Or being able to make him laugh!

But a lot of the time, we'd get nothing. We try to play with him, sing to him, dance with him, or read to him, and so often there would be no response. So I'd put him down and he'd wiggle and squirm on the floor. It was honestly hard to engage with him as much as a I felt a child should need, just because it was sometimes like interacting with a wall.

We are still seizure free. Today we're working on day ten! I have no idea what changed. And I have no idea if it will last, but it's been amazing to watch Cyrus come alive. On days five, six and seven the choreiform movements have lessened in intensity, if not in frequency. And he's become so responsive! He's looking at things and experimenting with all kinds of weird sounds that I don't know how to emulate. And if you talk to him, he talks back!

And on day eight and nine he has been so happy! He's been smiling and laughing socially, or giggling because we were pushing the wheelchair fast and then slow and then we did a wheelie! We took him to class on Tuesday - something we've been doing for over a year and never had a problem because he's so calm! But this time, he was so joyful! He was cooing and laughing and smiling. I actually couldn't hold him as this seemed to set him off further. When I put him on the floor, he was still happy, but more quietly so. But if I or dad picked him up he'd just turn into a little laughing motormouth!

And I realized then, he recognizes us. He knows who we are. And he probably has all along even if he is not always able to show it. I need to always remember this experience. And I need to never take it for granted.

We hope this trend continues and that we get to keep getting to know Cyrus better! It certainly makes it harder to get things done, as he is present and he wants to engage and play all afternoon and night! (He's seems to hate mornings). But I wouldn't have it any other way!

A few other notes: 
On Tuesday, we had an excellent appointment with the neurologist who assured us that if he suffered brain damage enough to get rid of the seizures that he would be near comatose right now. So this change may just be part of his progression. She also told us that since September Cyrus has continued to surprise her with how well he's been doing - with how well he's been growing and progressing. So even if it feels aggravatingly slow to us at times, we have to remember that he's already defying the odds.

This powerful piece is really what has got me thinking about recognition this last week. And while, it's not related to our experience other than that, it's a good read about a difficult moment. A beautiful piece that I recommend reading!

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The Impossible Has Happened!!

We are currently four days seizure free!! I have been so scared to commit that little fact to paper - I don't want to jinx anything after all! It feels a little surreal and almost impossible as Cyrus has not had more than one day in a row seizure free since September! And then there's also always the possibility that he is still seizing - either after we have fallen asleep trying to stay up with him, or that his seizures are just so small that they are not visible, which would still be an immense improvement!

And of course because things can never be totally simple, this blessing has been accompanied by a few new concerns as well. Cyrus has always had these bouts of hyperactivity or strange purposeless movements, usually after he's had a dose of one of his meds (clobazam). His neurologists refer to this movement as chorea or chorieform movements, and is perhaps maybe a result of his damaged basal ganglia. And since Tuesday of this week, this behavior has stopped being episodic and has been totally constant. If the boy is awake he is moving - he is moving his arms, his legs, and his mouth. Here's a couple of videos. The first is from Tuesday and the second is from last night (Friday). Perhaps you can tell me if you think it's staying about the same or getting worse.

This has caused a few problems. First off, he can't stay on his back and keeps rubbing his face all over the floor to the point of giving himself rug burns. I almost feel like we should transition to spending more time in one of his chairs, however the we've managed to break our on-loan wheelchair (it was already damaged so when this happened it was not hugely surprising. The thing is ancient!) so his headrest is not quite in the right position and I don't want him kept in it for longer than he needs to be for physical therapy reasons, and he hates the tumbleform chair - sitting there all day would make him absolutely miserable not to mention angry.

Which brings me to my second point, physical therapy has become rather difficult. His little body is completely out of his control - constantly flailing and it's difficult for him to do any of the exercises from tummy time to rolling down wedges or sitting up in a supported sit. Very frustrating. 

And most importantly, his ability to eat has significantly diminished. He is not sucking on the pouches and even when we spoon feed him, it takes him awhile to find the coordination to swallow. It used to take 20-25 minutes for him to eat about 10 oz of food. Now, it's like 45! And he gives us no signals anymore, it's hard to tell if he's hungry or if he wants more. So we've just been guessing based on how much food he was eating last week and how often he wanted it. There was one point last night where I felt we might have waited slightly too long as he seemed almost frantic when he was offered food, but I'm not really sure, as he has become even more difficult to read. We've not been able to get much expressive emotions from him in general this week, though he is still babbling when we pick him or talk to him or just 'cause. So that's good! 

Anyway, we conveniently have a neurology appointment on Tuesday and hopefully she can assuage my fears of a completely destroyed basal ganglia or at least offer us some options or strategies moving forward! 

In other news, I have just completed the school year and am absolutely looking forward to getting to spend more time with Cyrus and just be a bigger part of his therapy team! And maybe give dad a night or three off. 

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Even Getting Sick is More Complicated

As much as I hate teething and nursing a child through a cold, I actually slightly covet these moments as being an experience that other parents can completely relate too. These are just universal struggles that are understood by any who's had a honor and privilege of caring for a toddler.

But this week's particular bout of illness turned south and became a lot more frightening than Kyle or I had really anticipated.

Cyrus for most of Wednesday was vomiting a lot, even when he didn't really have anything left in his stomach he'd still go through this convulsing heaving thing that just makes me want to cry. I hate it when he vomits. It's one of the few things that seems to really upset him - it always comes up his nose as well and then he can't breathe, which makes it hard for him to cry, which just seems to upset him that much more!

In the evening, he couldn't keep anything down at all. The moment of panic was when I realized that that included his anti-seizure meds. I had given him a dose. He threw up within three minutes. And I followed the protocols of giving him a second dose if he throws up within 30 minutes, and he was throwing up before the dose was even finished!

This was compounded by the fact that he had a 102 degree fever and that reduces the threshold for seizures. When his meds were an hour overdue and he started having seizures pretty regularly. We gave him his emergency medicine which, thank goodness, is a suppository and that seemed to calm them for a bit.

I was panicking that it was only a matter of time before a status event* would hit. Part of me felt like we should just take him to the emergency room in anticipation, but going there unnecessarily seemed like a terrible idea as well.

The pediatrician wasn't answering her on call pages. And in my panic it took me far too long to remember that there was an on call neurologist too!

Thank goodness for the internet (and FaceBook in particular), which connected me with a group of families that all have children with the same disorder. Lucky for me one of my new ADSL parent friends was online, and able to chat and give me some advice and calm me down having been in similar situations before. She recommended keeping the diastat and car keys on hand, and wait it out at home as long as possible where he would be more comfortable. In general, don't go to the ER if you don't have to.

The pediatrician did finally call me back. I learned from her that you can deliver liquid medicines rectally as well! That you just have to go slow, 1 mL at a time, and that it will be absorbed quite quickly.

The neurologist informed us that if we needed to rely a little more heavily on diastat than normal just to get through the night, that one double dose wouldn't hurt him. She advised to wait an hour without vomiting, then try to give him some pedialyte. Then wait thirty more minutes and if he kept that down to redose the seizure meds only a few mLs at a time every ten minutes or so. That again, even if he got one double dose (as we can never be sure how much of the original dose he absorbed before he threw it up) he would be fine, if a little more sleepy than normal.

Two hours, three seizures, and another emergency dose of diastat later we were able to administer the full dose of meds over the course of 90 minutes. His fever had dropped to 100.3 degrees, and we were all able to go to sleep.

The next morning he woke up without a fever. Took to some food, though not with as much gusto as usual and was not followed by vomiting. His fever came back during this second afternoon and evening, but it was never as high and he only refused half of his meals. By this morning (three days later), all remnants of the fever are gone, he's still been a little sleepier and calmer than normal, but his appetite seems to be back!

*Status event - also known as status epilepticus, which refers to a seizure that does not break or resolve on its own for longer than five minutes (they can go on far longer than that).

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