Ruby Update

How’s Ruby?

She’s great!

Over the past month or so, she was sedated again to check her eye pressure, had house visits from her new vision coach Janet, and went for another ultrasound with our nephrology team.

On top of that, her little personality is developing more and more each day. She’s very happy and content, smiling and laughing for everyone she meets. She’s sitting up with support, eating solids, babbling and singing, and loving life bouncing in her jumperoo. And — her bald spot is filling in. 😦 I loved that little bald spot.

We’re feeling good, with good news on all fronts.

Healthy Eye Pressure – At Ruby’s most recent sedation, we learned that her eye pressure has decreased significantly since her goniotomy surgery, even without the oral medication. She’s now safely in the healthy range, continuing eyedrops morning and night. Our next clinic visit with Dr. Tehrani is two months from her last, giving us a nice little break. Ruby will miss seeing her pals as often.

Our New Vision Coach – We’ve enjoyed our first two visits with Janet from Early Abilities. This is a fantastic service available to kids in Ontario with visual impairments. Once every couple weeks, she comes to our home and joins in our regular routine. At our first visit, we played and did tummy time. Last week, Ruby had breakfast. Throughout the visit, Janet provides insight on how we might help give Ruby that extra edge to keep her development on track.

An example — because Ruby doesn’t have typical facial recognition, it’s important to greet and introduce ourselves when we interact with her. So, when Nanna visits and picks her up for a hug, she’ll say – “Hi Ruby. It’s Nanna! Let’s play.” This lets Ruby know that she’s the one being spoken to, and of course, that it’s Nanna who’s reaching for her. Where a baby with full vision can see this, Ruby will benefit from that help with recognition.

Observation is something to be aware of too. I find myself talking a lot more, explaining what I’m doing. “Mommy’s warming up your food… The food is on your spoon… Here it comes to your mouth.” Where other babies would observe this, Ruby’s language development is so important in helping her understand what’s happening around her.

An example Janet gave — you know how some babies will suddenly pick up your cell phone and start talking, even though you’ve never taught them to that? Ruby may not do those types of things because she’s not able to observe it in the same way. So, the more we talk to her and explain what’s going on, the better.

IMG_1219
Sitting up and looking at Mommy. Yay Rubes!

We’re also working on tummy time and sitting more, making sure we’re giving Ruby enough motivation to lift her head and reach for toys. Where most babies have visual cues around them, Ruby needs more attention here. Our type of play is a little more intentional than it may have otherwise been.

A Super Kidney – A few blog posts ago, we shared the good news that Ruby doesn’t have WAGR, a genetic condition that comes with an increased risk of developing kidney cancer. Because she only has one functioning kidney, we’re still monitoring it to make sure it stays healthy.

At our last ultrasound and consult with the lovely Dr. Matsuda-Abedini, we learned that Ruby’s kidney is as healthy as ever. There’s also what looks to be another kidney after all, but it’s definitely not functioning. Most often, these non-functioning kidneys disappear on their own. If by our next ultrasound in 6-months it hasn’t, nuclear imaging will give us a better understanding of appropriate next steps, which may just be to continue monitoring it.

Bottom line is that our little super kid has one super kidney, and that’s all she needs.

 

So there we have it. Some calm after the storm. I’d even say sunshine.

Having gone through these past few months, there are moments I just look at Ruby and feel so immensely lucky. The other night I was snapping up one of her soon-to-be-too-tight sleepers. With each little snap, I felt grateful for that tiny moment, recognizing that between all these appointments, our little girl is growing up. I get it, she’s still a baby, but it’s already been over six months!

We were at a family wedding this past weekend, and knowing the parents of the groom so well, it was the first wedding we observed from their perspective. Seeing their pride, happiness, and pure gold love made us appreciate our own little family even more. Every family has their own story, and this is ours. I just have to remember to breathe, slow down, and enjoy every turn.

 

-SG

 

 

 

 

 

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1 thought on “How’s Ruby?”

  1. This journey for you, Ryan, and sweet little Ruby…I’d say you’re handling it superbly. Feeling grateful for your blessings and staying positive. How could you not? She’s simply beautiful!!
    Sending much love to all of you. ❤️
    Pam, your campfire singing partner

    Like

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