I swear I remember reading long ago that parents were supposed to look forward to a golden period — a few months after your baby was born but before they learned to crawl. Because your baby would laugh and smile and coo but weren’t yet at a place where they were mobile and constantly destroyed your house.
Maybe it’s just the joy of nice weather and long summer days (the average temp is around 22C/72F and we have daylight 20ish hours of the day), but it feels like we’re in Eloise’s golden period — just a year later than expected. 😅
Not all is roses. She did end up having a 2 minute seizure last Friday which ended our exactly 2 months of seizure-free-ness. But she was back to herself immediately afterwards. Ever since then I keep swearing that any day now she is going to cut in a new tooth: she struggles to take her afternoon naps, she’s constantly drooling, and she’ll cry for 30 minutes most days, and just wants to chew on our fingers. But who knows.
I am now back to work (I’ll be working at 80% capacity) and Brian just started this week. So maybe our golden period might quickly fade into stress.
But, regardless, there is so much good happening that it needs to be celebrated and savored.
Eloise loves “talking”
I know so many have prayed are praying for miracles for Eloise. If I could wish for one thing, I think it would probably be that she’d be verbal someday. That’s highly unlikely, but gosh this kid is enjoying exploring her vocal abilities. She may not ever be able to form sentences, but I’m pretty sure she will communicate her affection — or dissatisfaction — anyway.
Eloise is working on standing
As of a few weeks ago, Eloise finally has a stander. One of her physiotherapists (PT) told us that, for her age, Eloise should be standing 1-2 hours per day in order for her hips and body to develop correctly. Eloise may like standing but I can’t say she’s exactly loving her stander yet. Her PT thought for sure she’ll only need it for a few months anyway. I’m not so sure. But let’s see if she gets used to it — E may surprise us yet.
Eloise has play with purpose
When I was pregnant, I’d always imagined that our baby would get into our kitchen cabinets and play loudly with what she found there. After Eloise’s diagnosis, though, I understood that might possibly never be a reality for her. Or, if it would be, then it would likely be years down the road.
But it turns out that kitchen utensils hanging above our counter are exactly what Eloise loves playing with right now — I just have to help her get to them. And the amazing is that they are actually good therapy tools for her.
I started out by putting Eloise in her tumble forms chair to play — which has a lot of support for kids with low tone. But, eventually, I switched her to her tiny little Bumbo multiseat. I can’t believe how much more steady she is sitting in that chair than she was just a few months ago when she seemed to fall over to one side or the other or slump because it was too hard to keep her head up for long. (The same thing for her stroller actually, too. She used to immediately fall to one side, but now she just slightly leans.)
On top of that, the CVI (cortical visual impairment) specialist we had been seeing weekly agreed that basically Eloise’s eyesight has improved so much in the last few months that there’s not a lot of interventions or exercises we need to do for her. E’s vision has gotten so much better that she’s started to study our faces (though no eye contact yet). Being able to look at and recognize faces is the thing that develops last in CVI kids.
Eloise is eating well
At the start of this year, I had only one major goal for our family — get to the point where we were all eating meals together. (I now have a second, which is go on a vacation. But that seemed too big at the time.) Regardless, I didn’t have a vision for what a family meal could look since E would likely not be able to feed herself and statistics gave her a 50/50 chance of never being able to handle anything but puree.
To my shock, though, we are getting really really close to family dinners becoming reality. Eloise is not only eating solids again (God bless those antibiotics that fixed her ear infection), but she’s handling pretty complex textures. She’s doing so well, in fact, that she’s now eating the same meal as either Brian or I every time she eats. It is beautiful. And, well, way easier.
Ultimately, Eloise is just such a joy
When we got Eloise’s diagnosis and I realized there was almost no chance Eloise would ever be verbal, one of my biggest fears is that I wouldn’t be able to know Eloise. That she wouldn’t be knowable. I think that’s why my biggest concern was that she might be autistic if she were born too early. To my mind back then, autism meant not being able to really connect with your kid.
But here we are, a little over a year later, and I can say Eloise truly has a personality with clear likes and dislikes. (Likes are shiny things. Dislikes are physiotherapy and weight bearing on her arms.) And it fills us with so much joy to watch her little self unfold. And, funny enough, she will undoubtedly be diagnosed with autism at some point, but I can tell you for sure now that autism does not mean unknowable. 💕
All our love,
Mallory, Eloise, and Brian
Eloise The Tiny Fighter 