Happy Birthday Cyrus!

He's like a baby bird! His head will just swivel back and forth looking for more! For his birthday dinner, we gave Cyrus some tilapia, which was both one of his first solid foods AND has continued to be one of his favorites. Tonight he ate a whole full sized piece!! I was amazed! 

Then there was the white chocolate raspberry cheesecake! You could tell he was excited because he kept making the suck/kissy sound in-between bites telling us he was eager for the next bite. Definitely loved dinner AND his birthday cake. Yay!

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The Second Year of Life begins tomorrow!

Playing on the swings on our last day of being less than a year old! Don't know why the day before his birthday feels significant, but it does... Maybe because I still remember being in labor today last year so excited to meet this little guy! Or maybe because it's been a really really long year with lots of unexpected twists and turns, but at the same time, it feels like it's gone by so incredibly fast. 

They say kids grow up so fast, and it's become one of those weird phrases that I've become rather sensitive to. Not that people should stop saying it or anything, it just makes me super aware of how different our reality is. Because Cyrus isn't really growing up. He's growing in that he's getting bigger. But developmentally, he hasn't changed. He's in the same place he was in September after the status event. And he's lost some things, so maybe he's even gone backwards a little.

In a strange sense today, is like the Eve of the New Year. Today is day 365 of life! And we get to reflect on and acknowledge the everything that Cyrus has brought to our lives.

I can't say that there hasn't been pain and sadness. There has been. The last four weeks in particular have been difficult as Cyrus has had more break through seizures and has become less and less expressive and responsive. I definitely cry more often than I ever have before. 

But he also inspires me to slow down and be present, to notice flowers and birds and sunrises, to sing more often, to just enjoy cuddling on the couch and walks along the trail. Because the truth is, I totally laugh and smile more often too! 

Tomorrow is the beginning of a new year! Arriving at this milestone feels incredibly significant. First, it's one that cannot be taken away by a seizure, and second, the nature of Cyrus' disorder is that, like everything else, it is unfortunately not a given. And somehow the victory is far far sweeter when the outcome is in doubt.

Happy Birthday's Eve to the sweetest cuddle bug anyone could have for son! 

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The birthday party is in San Mateo Central Park on Feb 28th. Let me know if you'd like an invite if you'd like to come celebrate with us!

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Holiday Travels

Cyrus handled the long two and three hours drives to visit various sets of grandparents and aunts and cousins like a champ! Meaning, he very strategically slept through most of them! And he seemed to love the visiting itself. In new places, he seemed more energetic and active than we've seen him be in weeks! With lots of flailing, more cooing, and just being more responsive in general! I very much think that the new places and faces were incredibly helpful and stimulating and maybe serves as motivation for us to take him out more to visit others rather than having others come to see us all the time (though that's admittedly easier).

It was also super useful to watch some moms who have gotten to experience playing with actually responsive infants to get new ideas for how to play with him! He didn't sleep quite as well on the trip, but who does when you can't sleep in your own bed.

And once he came home he had one of the most successful visual therapy sessions yet! He was holding his head up, playing with toys, and adjusting to changes in position well. And after his therapist left I realized that he does way better in the supported sit when I prop him up in the chair as he didn't even try to arch his head back for a good 5-7 minutes or so.

Yesterday, was a little harder. Cyrus had six seizures total, two of which were stronger than the ones we've been seeing lately that left him somewhat out of it for the rest of the day. And three happened in the evening relatively close together, requiring a dose of emergency medicine. Though giving it to him made me realize that I couldn't remember the last time we had to do so! I had to go back and check, and it's apparently been almost four weeks!!! 

Today, he's been really sleepy - and hasn't really been awake for more than two hours in a row all day, but he's waking up for all the meals, and is much more aware and responsive when he is awake than he was yesterday.

The last two days have been rough, but I wonder if they would've been considered that without the preceding absolute fantastic week prior!

Off the Schedule

Cyrus is currently going down on one of his anti seizure medicines and has managed to maintain his low seizure count with only 2/3 meds at full dose. Our hope is to completely eliminate it by the end of this month. This has been helping him to be more alert when he is awake and is helping to increase his appetite!! So he can hopefully gain more weight! 

We have received a tumble form chair on loan that will hopefully help with his posture and ability to sit upright. We get to keep it until he grows out of it! 

I made the mistake of letting Cyrus get off the schedule during Thanksgiving break and he seems to be responding to our attempts to get him back on the schedule by becoming totally nocturnal! Which is driving us crazy! But in general things seem to be going well. Excited for getting to spend another few weeks together over winter break!

Establishing Vision Baseline

So if he wasn't teething before, he definitely is now! Can actually see the little white lines under his gum. Makes him less than thrilled most of the time. How long does this last again? 

Cyrus got his eyes checked this last week to establish a baseline. The ophthalmologist taught us a few new things. The fact that he hasn't been following or making eye contact since his huge seizure in September may not mean anything when there is a physical fine motor delay. Apparently moving the eye takes like coordination from six different muscles all moving with precision. And seeing as we KNOW he can't coordinate his muscles much it makes sense that he might not be able to move his eyes either. Eventually, when he has better head control, we should watch for him moving the entire head to look at something as moving the head is way easier than moving the eye, at least in terms of coordination.

Apparently the fact that he has been sleeping 8-9 hours in a row at night (when he's not teething!!) is a really good sign as it means light is at least getting to his mid-brain and establishing a circadian rhythm. Apparently people who are blind often only sleep three hours at a time or so (especially as babies) and then are totally awake for another three hours before wanting to go back to sleep. 

Anyway, he gave us a referral to a vision specialist who works with visually impaired children to develop things like coordination! We also get to start real physical therapy next month! So maybe he'll eventually stop wanting to arch his head back constantly! (A crucial first step to being able to sit up! But hey!! He doesn't tend to fall left or right anymore when we prop him up in the chair!)

Returning Milestones!

It's been an encouraging week! A few developmental milestones that had disappeared since the September hospitalization have made a reappearance this week. 

He's started holding onto things again, showing the step-down reflex (where he looks like he's walking or jumping when you lift him up), and a social smile!! 

His vision still seems to be in and out and he's getting this weird partial seizure that makes his face twitch (rather than his limbs), which freaks me out. But overall, the count is still low and has only needed emergency medicine once in the last two weeks!

Just an Update

Cyrus is continuing to do well in terms of seizures with about 1-2 seizures a day. There was even one day where he went completely seizure free about a week ago!

This week has been a little rough. He slept through most of his cold, but is now showing those first signs of teething. Yay? 

His other latest development has been to start occupational therapy, which is specifically to help him learn to eat! Apparently, things like eating are challenging when your limbs (and tongue!) have minds of their own. Abnormal tongue movements is actually where his choreiform movements were first identified by the neurologists back in September.