15.5 months: Eloise the explorer

These last few weeks, something magic seems to be happening. It’s like Eloise has suddenly realized there is a world beyond her and she wants to explore it. She’s reaching for things, transferring objects from one hand to another, exploring textures and lights and environments. With our help, of course.

Because our cat is not enjoying Eloise’s sudden interest in “petting” her, it’s starting to look like we might need to seriously consider getting a puppy. Our next steps will be to have a few short playdates with a few different dogs of people we know, just to see how she reacts.

Funnily enough, though, this visual and tactile development growth spurt happened at the exact same time we got some not so great news.

It turns out Eloise is at least partially neurologically blind

You see, there is definitely some evidence when you look at her optic nerves, etc. that Eloise has poor vision that could benefit from glasses. But it does not account for everything.

• The lack of eye contact.
• The looking in a direction, turning her head away, then reaching for an object.
• The staring at light sources.
• The obession with removing my glasses all day one day, and then ignoring them the next.
• The fact that, until recently, she didn’t react to objects unless they were really close to her.
• The not noticing her reflection in a mirror.
• The eye exams that showed mostly healthy eye nerves.

These are all symptoms of something called CVI (cortical/cerebral visual impairment). What it means is that even though Eloise might “see” just fine, unfortunately, due to her brain abnormalities, her brain isn’t really processing the images right — or even at all. Depending on the day and circumstances and distance to the object, sometimes Eloise might see something, sometimes she might not.

We had written to Eloise’s eye doctor to ask if we could consider getting her glasses a little earlier than the planned 18 months, but she explained Eloise that has CVI, which means glasses might not help a lot. She also said that knowledge of CVI in Estonia is minimal.

When we got the news, Brian and I looked at each other and sighed heavily. “Seriously? Another issue? Does the bad news ever stop?”

Thankfully, our pity party only lasted a few minutes before we began feeling gratitude again at how much Eloise CAN do. She’s already surpassed our expectations in so many ways. Plus, in our short google search we discovered that with the right therapies, her eyesight could improve. Sure, that means that we’ll have to figure out another therapy but, hey. That’s the price of getting to be the parents of this cute kid.

Some great news around her CVI

I had remembered on instagram that there were a few parents of kids with rare genetic disorders who had mentioned their kid had CVI — so I reached out to one, asking her if she had any websites or resources she would suggest we start with to find therapy activities to do with Eloise.

She did something even better, and got me the information for a weekly virtual playdate for kids & their families with vision issues. It’s run by a San Francisco charity for the blind and visually impaired. On top of that, she gave us the direct email address for a gal who works there and has tons of experience assessing kids with CVI. Within a few days, Brian and I were on a video call with her and it was amazing.

As she watched a few videos I sent and then watched Eloise on the call, she complimented Eloise’s “advanced skills” over and over again. Gosh we were proud parents. By the end it was clear that Eloise has progressed beyond phase I of CVI and actually is in Phase II — which sounds encouraging. With that assessment, the therapist was able to give us a few exercises and ideas to start incorporating into Eloise’s daily rhythms to start helping improve her vision.

We will meet with her again next week and, hopefully, start attending this zoom playdate organized all the way on the other side of the world a few times a month. Just a few years ago, this never even would have been a thing people did.

Feeling so so so grateful.

(If you want to know more, you can watch a whole 60 minute lecture on CVI here or check out the three different CVI phases.)

Therapy is helping in big ways

Brian’s been to coaching/therapy and I’ve been doing multiple forms of therapy with multiple therapists for almost a year now. Friday, Brian and I even got to do our first therapy session together thanks to our team in Tartu.

No matter what the topic, I always seem to have some sort of revelation or breakthrough with each session.

Maybe I’ll write more in depth at another date, but, I am blown away. Something big happened in therapy a few weeks ago when I sat down to confront some things that had been bothering me about how I was processing my past. During that time, it felt like a huge blockage was removed and, afterwards, I was full of joyful energy for days. But it wasn’t just my processing of the past that changed, something in my present changed, too.

• I’ve been noticing that I can’t remember the last time I had that guilty feeling of, “I didn’t accomplish enough today.”
• I’ve been noticing a reversal. Instead of like in the past when I was with Eloise and thinking about all of the tasks I needed to get done later, instead I’ve been trying to accomplish my normal tasks but instead daydreaming about all the fun activities I’m want to play with Eloise later.
• I’ve beennoticing that I’ve been feeling, well, mostly present, I think.

Crazy that just a little over a month ago I was writing about the fact that I needed to learn to be more present and, well, I think I really am learning to be that. I can’t believe it.

There’s so much more I could write on the topic, like the guided meditations I’ve been doing, the app that’s been helping me not only therapeutically but just awakening in me what’s important. Or, of course, some of the specific learnings from some of those sessions.

But for now, I’ll leave it at just the fact that therapy has been incredibly helpfulf — even when I absolutely didn’t feel like I needed it.

As the psychologist told Brian and I on Friday — Eloise will create more neural pathways best when she’s having fun. So right now I feel released and free to just, well, focus on having fun with Eloise. Because that’s my best shot at helping her little brain develop.

What a great thing.

Seriously, though, Eloise really is exploring the world

I started off this blog post by talking about how amazing it was that Eloise is starting to really explore the world and, well, I really mean that.

Yes, she is still struggling to stay asleep or fall back asleep at night because of teething pain, but the delight that is happening during the day in our household makes up for all of the sleeplessness that we’re feeling.

Just this week Brian and I started noticing that Eloise was holding out her arms towards things. So Brian started going with it — bringing her towards whatever object she seemed to be “reaching” for. And it has increased her delight factor.

I guess, just like a normal toddler at this time would be running all around the house, digging in drawers, touching things, putting stuff in their mouth — Eloise is still a bit like that. Only we have to be her legs to get her to what she wants to try out.

In our worst nightmare when we got her diagnosis, we never expected life with her could be this fun. We thought she might be confined to a wheelchair, spending most of her day sleeping. And, yes, that could still be her future. But, for now, that is not her present. So we’re going to savor it for as long as it lasts.

Not only that, but we even managed to get to step 3 for our “Project: Take a Vacation someday.” Eloise and I got the stroller all the way to the nearby nature trail, where I took the shortest loop possible.

Tomorrow we will probably try to go a bit longer and, well, if it keeps working, then maybe Brian and I will even try to make it to the zoo in a few weeks!

Finding our therapy rhythms

With my own inner awakenings with all of this therapy, I have found myself looking for objects and toys I can introduce to Eloise to do as a sort of home occupational therapy. I literally have a pile of things and activities I cannot wait to introduce to Eloise in the coming weeks.

And then it occurred to me that when I’m with her I always forget about physiotherapy. And Brian often forgets about occupational therapy but says he looks forward to doing physiotherapy with her.

So we had an idea.

I will take the lead on occupational therapy stuff with Eloise, and Brian will continue doing an incredible job at helping Eloise with physiotherapy. So then we both don’t need to constantly be thinking about both therapies.

As for music therapy and vision therapy? We will still continue learning about both of them and I would imagine we will find basic ways to fit those into our lives, too.

Life is so different — I am so different — than I was a year ago when life was so hard. (Almost exactly one year ago I wrote about my extreme mom guilt on caring for Eloise’s needs.) Eloise was screaming in pain all the time, I was on an extreme diet for her food intolerances, E would not let anyone but me feed her, I was still trying to pump and breastfeed her with a complicated system, I was taking her to therapies all the way across town where I would then have to stay in the parking lot an extra 30-60 minutes before or afterwards just to make sure she ate, Eloise would only nap on me, and literally her entire waking time was filled with eating and then me trying to get a little physiotherapy in — fun or going places were ideas that seemed so far from reality I couldn’t think about them.

Today, though, I feel so full of hope. I feel so full of gratitude. I feel so full of light and love.

Of course, it sure helps that Eloise is a whole lot happier these days. And that we get a whole lot more time to spend with her beyond the bare minimums of keeping her alive by feeding her and letting her sleep. It feels like, even though parenting is a lot different than what we’d imagined before Eloise was born, we are getting pieces of it. Eloise is exploring the world.

For that I feel eternally thankful.

It almost feels like our life is too good to be true (other than the reduced sleep and teething pain, I mean).

I doubt all weeks will be this good, but, gosh, it feels nice to feel like the future is full of possibilities. Hoping also for better days for those affected by the Russian invasion of Ukraine.

This week, we feel lucky.

All our love,

Mallory, Brian, and Eloise

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