Talk to Me

I love taking Cyrus to social events where there are a children under the age of five and under two is even better! Because they will just swarm all over him - they run up excited to look at the cute baby! And the most common thing they say is "Wow! That's a big baby!"

It's quite an accurate assessment really. He still doesn't really have hair so that helps with the baby impression, but he also moves like a baby! His arms and legs still flail a bit making him look uncoordinated and quite a bit younger than he actually is. But he is pretty normal in size for an 18 month old - tall and thin for his age. So he really does look like a ridiculously big baby!

At which point a mom will ask, "How old is he?"

"He's 18 months!" I tell her.

At which point she glances at her own 15 month old daughter, who is tottering unsteadily around constantly trying to poke my son (this child would just let out the most precious giggle every time she succeeded - my heart definitely melted a bit), and then comes back to my flailing son.  And she is totally silent. She doesn't say a word more about my son, though she is suddenly way more persistent about trying to insure her three children don't bother him too much despite my assurances that they are totally fine and more than welcome!

And the silence made me sad. Though I couldn't exactly figure out why. Because it definitely wasn't the first time and I assume she was just trying to be polite. It took me hours to figure out that what I really wanted was an opportunity to swap parenting stories, an opportunity to commiserate, an opportunity to talk about my son!

Because he's precious and happy and oh so strange and loves to dance (with help!) and learning to roll to every corner of a room!! I have more than a small suspicion that he will love roller coasters if he ever has the chance or ability to ride them! And sometimes, he wakes up three times a night or gets so sick he can't keep anything down. Sometimes, playing with mommy and daddy is the best thing in the world and sometimes he wants nothing to do with either of us.

I want to tell you all - It's okay! You don't have to tip toe around me! This is our reality! You're not going to say or ask anything that I will find offensive or startling. I know a bit about how children normally develop and I know that my child is on a different path. You're certainly not going to give me any worse news or realizations than his doctors already have. In fact, your child's accomplishments and milestones are just that much more amazing to me because such achievements are not a given in my world.

So bring on your morbid curiosity! Ask anything you want! And then after I confide our abnormal struggles, please don't hesitate to share with me your pride, your frustrations, and your worries about your own child! I know you want to gush about your kid!

Because I very much want to gush about mine!

...

Other updates: 

I have gone back to work - and during that first week I swear Cyrus was mad at me or something as he starting denying me his gorgeous grins. I saw not even a glimmer of a smile for like three days! Then this week he caught a cold - and I think that was unfortunately that was my fault. Nothing serious, but he has been extremely congested. And suddenly he's like the happiest clam ever! And it's like - I don't understand you kid! You really are so strange!! We have spent the afternoon and evening listening and dancing to Lindsey Stirling's new album - Brave Enough. And in between coughs and sneezes and sunburns he has just been laughing and giggling in ways that I haven't heard in weeks! We also upped one of his meds and it looks like he's back up to seven days seizure free! Yay!

He started at the puzzle blanket...

Science experiments with cool whip! 

A Bad Day

A bad day after two months of good ones is especially hard to take. Hell, this wouldn't have even been considered a bad day by the standards of the old pre-seizure-free baseline. And I know that, but I think I struggle more with the what the event could potentially represent for all the tomorrows.

Cyrus had three seizures this evening. At least we think he did - we're only sure about one of them. These new seizures are subtle - he goes quiet and still, which is what helped me to even notice because he's never still. And then, when you look at him closely he's just slightly shaking. You can see it in his arms and head - just a slight tremor that you would totally miss if you weren't looking for it.  Which makes me also wonder how many of these events we've missed. I don't think it could have been too many before yesterday because after the seizure he's been fussy and sleepy.

And that's what gets me. Why I feel tense and tight and don't really want to do anything more than cry at the moment.  After a seizure he's confused and disoriented. The seizures are bad enough - but I really don't want him to lose anything that he has gained. And he has gained so much in so short a time. I don't want to watch it fade away and I'm terrified that's exactly what is going to happen.

Worse, I go back to work in just a few days and won't even be here to comfort him when nothing makes sense.

I'm trying to rationalize these feelings away even though I know that's not healthy nor helpful. It's just I understand Cyrus's disorder. I know how it works and while I knew he would most likely start to have cluster seizures again, I hoped (and still do) that that day would stay far far away in some distant future. I want that moment where I'm more surprised that he's had a seizure than not. I want it to stay.

I hate that I'm putting this up on the coattails of such a positive update, and I sincerely hope that my fears and pessimism at this potential trend is just a bad day and, in the end, unjustified. That it will be another five days or another fifty before there's another seizure. I just had to write it all out - how else will I sleep with all these unprocessed fears eating away at me?

Cyrus emotes in pulses at times with both crying and smiling - don't know why,

but I find it amusing. It's probably a sign of a neurological problem or processing

delay, but we already knew that so.... I'm going to continue to find it amusing.

Milestones

When we're catching up, one of my sisters will often specifically ask what new milestones Cyrus has reached. Or if he's doing anything new. And a lot of the time, I have had to tell her no. But honestly, I never found this answer discouraging or upsetting because, as I explained to her, often the changes are so subtle and then suddenly, seemingly out of nowhere, he will start doing something totally new all at once! These last few weeks have been rich beyond belief in such moments. 

During Cyrus's last therapy appointment Cyrus used his eyes to follow a flashing wand. His eyes, and not his head. His therapist mentioned that this was the first time she had ever seen him demonstrate this level of ocular precision!

His head control and positioning has also improved immensely. He doesn't arch as often or as hard, and often it only takes a nudge to encourage him to bring it back up (unless he's really tired or cranky - then he wants to arch). He does not really ever drop it forward anymore. This is especially exciting as his therapist says we can now work on teaching him how to sit up. But more importantly, it means we can now play airplane! Which I definitely indulged in more than once on our vacation this last week.

Over this last week I have also noticed him bringing up his arm and wrist to his mouth. He's been gnawing on it for days the way another child would chew on his own fingers and hand. He does this mostly when he's tired or hungry and I think he's actually doing it to comfort himself! It's clearly intentional.


In addition, his social smile, laughing, and social vocal response have become incredibly consistent. On our trip we visited five grandparents, two aunts, four cousins, and three other houses filled with really good friends and tiny children. And almost every time someone spoke to him he'd respond with an "ooh" or if they were making faces, he'd start smiling back! This behavior has never been so consistent.

And lately, he's just loving tummy time. He's gotten really good at holding his head up here somewhat on his own - though he's still a bit wobbly. And in the last few days he specifically has been showing some precursors to crawling by sticking his butt up in the air getting his knees under him as well as actually pushing on the ground with his hands.

Then yesterday, he rolled over from back to front like it was the most natural thing in the world. And then he did it again. And today he just won't stop. He's already using his new found skills to make escape attempts from diaper changes and floor blankets. He does occasionally still get stuck with an arm underneath him, but this doesn't seem to discourage him - he'll just keep trying to flip his leg back over even harder with flexibility and core strength that I envy. He'll probably have some sore abs tomorrow.

Roll over! Roll over! Send Cyrus right over!

The only bad news I have to share is that we broke our 51 day seizure free streak this last Tuesday. But he immediately slept it off and was back to his smiling, laughing, oohing self. We're now into day four of attempting to establish a new record!

        

In other news: 
After three phone calls we still have not received our COBRA enrollment packet via snail mail or email. And as always, we have to refill stupidly expensive prescriptions relatively soon, so my anxiety levels are a little higher than normal, but we have a few contingency plans, so I'm sure it will all work out.

And we did just receive notification that we have been approved for Medi-Cal under the disability program, so if Cyrus gets his Medi-Cal card in the mail next week this might help with all the prescription nonsense - even the specialty pharmacy refills - and our financial sustainability near all these doctors that we love! Hopefully, one of these insurance programs will iron itself out in time.

Cyrus is starting a new class on Monday, that is a social and sensory development class. It has several other students with developmental delays. There's lots of singing (bilingual singing!!) and sensory and physical play.

On Friday I go back to work for the new school year and while part of me is sad that I won't be able to spend quite as much time with him, I'm beyond grateful that I had the privilege of seeing Cyrus make so much progress while I was at home to see it happen!

Time hop: 

Cyrus a year ago! When he was on steroids.

Note: In the tech migration from my old work gmail account to my personal one, I seem to have lost all pictures and videos on my old posts. This will be repaired! But it will be gradual.