Equipped

I was recently asked to take some photos of the adaptive equipment we use everyday as a family with a daughter with Rett Syndrome. I usually refer to my new mom friends with girls who also have Rett as "Rett Moms" but lately I've just been referring to them as their first names, because now we talk about stuff besides Rett. We're buds. So. Are we a quote-unquote "Rett Family." Well, yes. And no.

This is Anna's Easys chair that has two bases: one for feeding and schooling (pictured) and another that is an adaptive stroller base.  It's like a pediatric wheelchair only incognito.

To people in the Rett community, we are. Everyone with a daughter with Rett is known as a Rett family, with Rett moms and Rett dads and Rett siblings. But in our daily life, with the multiple medications and dosage times to keep our Anna healthy and well, we're just us. Groundbreaking idea, I know. 

But as I compiled these photos it became clear - symbolic of how much our day-to-day has changed really - that we have arrived to Rett Land and won't be returning to Life As We Knew It ever again. For anyone newly diagnosed who may have stumbled across this, I will tell you what I wish someone had told me as I was perusing through the hundreds of sad-as-all-get-out Rett Syndrome videos on Youtube I too found myself watching and weeping from fear of the unknown in those first post-diagnosis days:

It gets better. Or, I should say, how we deal with it gets better. 

(Ok, full disclosure: The majority of the time.)

I never knew what an adaptive stroller with included feeding system meant. But our therapists helped us pick the right one, and after months of waiting for approval, we received it. And then once it arrived, the anxiety set in just looking at the directions. But now... Now... It's just a part of our daily life. Anna sits in her chair to eat just like Gabe sits in his "spot" to eat. It just is. 

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Anna's Otter bath chair that we should use more often but don't. It's too high, which prevents her from being covered in water so she is freezing by the end of the bath for this reason. Anna also loves feeling the water and splashing in it... We are currently engineering an idea of chopping off its legs and adding big suction cups. We'll let you know how that turns out. For now, we give our backs a workout by laying her flat in the bath so she can enjoy it.

We used to give Anna a bath just like any other bubbies until 1 of 2 things (or both) happened that caused Anna to quit sitting up on her own. For the last 9 months, I have blamed the feeding tube placement/surgery on her inability to sit up. My recent stint in the hospital, where I entered scar free and came out with 5 painful incisions, only confirmed that abdominal surgery sucks and those first few weeks after being cut into are pretty crappy. At one point during my stay, I had to have a physical therapist come visit me and do chest therapy - basically pound the hell out of my back to open up my lungs - because just the act of breathing hurt. Anytime I'd breathe, it felt like the incisions were ripping open. Especially the ones by my ribs. So, I thought I was pretty undeniably correct in my assumption that the g-tube surgery ruined everything.

Until I really started thinking back to last summer, when our morning ABA therapist would come, the one named Sunjoo who Gabe called Sun-juice who ended up being replaced with someone else. Anyway, she'd be scared to work with Anna in her play area, where Anna had a hard time holding herself steady and where her head would drop in all sorts of weird angles. Sunjuice would ask, "Are you sure she's ok?" as Anna tremored and sometimes flopped over. (From the dreaded "R" word - regression.) Perhaps this was my own denial (I've been known to hang out in that little grief stage every now and then when faced with Rett-adversity) but I consistently insisted Sunjuice was overreacting and Anna was fine. Really.

We ended up needing a bathing system to give her a bath without breaking our backs. But once it arrived we weren't thrilled with it. For how much it cost, you'd think we'd be jumping through fire with excitement.  If you've made it this far, refer to the caption under the photo. Hopefully with a little Egyptian engineering (a tribute to our landlord) we can get it working for her - and us.

As she gets older and weighs more, we're going to need to do something. But since I am taking every day in increments of "just get through the morning routine" or "just make it through the night time routine" I don't have a lot of patience in thinking about the future, especially without a drink or anti-anxiety pill in hand.

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Ahh, the five-legged silver nuisance.

I shouldn't call it that for fear of hurting its feelings. It does it's job of feeding Anna her Elecare every night; there's just no way of being inconspicuous about its existence.

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Assistive communication technology: a work in progress.

This is Anna with her eyegaze board. This little board can be filled with pictures and objects. As we ask her questions, or teach her to identify objects or colors, she can look right at the answer instead of struggling with her hands. Example: we now have a Sick Board. When Anna isn't feeling well, we show her a pre-made board of different body parts that commonly hurt her (tummy, teeth, ear, etc.) and she can tell us by looking at the correct answer. It comes in handy in the middle of the night when she's crying and we're too tired to grab the Yes/No buttons and ask her 20 possible scenarios until we arrive at the right one, which is frustrating for us, and for her. Imagine being sick and not being able to tell anyone where it hurts... Just hoping they ask the right question...

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This is her freestander, which she stands in with her AFO braces to strengthen her legs and torso.

She's not a huge fan of it, as she is constantly leaning either forward, backward, left or right and we have to watch her with the ol' stink eye to make sure she knows to stand straight.
:)

Well, there's not much else to say. Except that I am amazed all of this fits into our flat rate postal service box. (It's a little bigger than that we like to think.) Who would've thought, so much equipment for one little 21-pound-and-growing gal? But it weirdly makes our lives somewhat easier.