When we decided to try casting for Eliana’s scoliosis, I started panicking—no swimming, no baths, no sand, no getting it wet, no getting too dirty. “What are we going to do all summer?” I wondered. I started making a list: outdoor activities not involving water for days that aren’t too hot, indoor activities for when it’s hot or rainy, both nearby and farther away if we’re feeling adventurous. Let’s call it a “Dammit, we’re having fun” list. Like a bucket list, but no buckets allowed.
Yesterday was a nightmare. Scheduling mix-ups at Hershey, bugs at the playground, kid who wigs out about public bathrooms, ending with me overdoing it and lifting too much. So today was a “Double dammit we’re having fun” day. We did
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June 22, 2018 at 4:32 PM 1 comment

The Bounceback Kid

So…Tuesday was The Day.

And now, two days into what could be a multi-year process of scoliosis casting and bracing, I can report: “So far, so good.” Specifically, Eliana has bounced back from the casting experience way better than we could have reasonably expected. Plenty of time for various other things to go haywire, mind you, but her continued resiliency is just this side of crazy.

And I’ll prove it.

We arrived at the hospital right on time at 6 a.m., which certainly had ME grumpy. Upstairs to the waiting room, then to the post-op beds to get ready for surgery (too many kiddos had to stay overnight in the pre-op rooms so there was no space over there). Headed off to the OR around 7:45, and was back in recovery by about 9:15. Now here’s where it gets weird.

This is Eliana at 9:27.  Recovery

Barely conscious, eyes half-open, without a thought in her mind other than “take it off!” – referring to the I.V. that is still taped down on her left hand. Note the new turtle (from Moana, if you’re keeping track).

Then this is her at 11:05.

Nuggets

No joke. We left the hospital at about 10:15, and about 15 minutes later the last of the anesthesia must have worn off and she said “I want to go to McDonald’s and have nuggets for lunch.” Of course we couldn’t say no, and she ate all 4 nuggets along with the order of fries. No fuss, no muss.

Keep in mind, now, this was 90 minutes after waking up in recovery, AND with a couple pounds of plaster wrapped around her torso for the first time ever. Walked right in, took a seat and ate her lunch.

Damn.

And much to my surprise, she also took a solid nap and slept through the night without a single comfort-based complaint about the cast. Lots of “I want to take it off now,” but nothing about it hurting or anything like that, so score one for the doctor there, I guess.

Of course things weren’t entirely rainbows and unicorns on Day 1, but we got that on Day 2. One of the tips they give you for the cast is that it can be decorated with duct tape. Didn’t fully understand why that was a thing until we saw the actual cast, which is “petaled” with moleskin flaps all around the edges, then held down with tape for security. So this morning she and I went shopping for some pretty tape and came home with pink unicorn tape. So if you’re wondering what a scoliosis cast looks like, and if it would look better with pink unicorn tape, today’s your lucky day!
Cast

More to come as we figure things out, but so far so good.

 

 

 

June 13, 2018 at 10:10 PM 1 comment

Turtles all the way down

img_20180531_110733188_hdrEliana will be getting a turtle shell. What I mean is she needs a cast for scoliosis (a permanent cast from her armpits to her hips, explained in more detail here). Hank came up with the idea of calling it a turtle shell, thanks to a tiny stuffed sea  turtle she’s taken a liking to recently. There’s a history of coming up with clever names for medical devices: When she needed the leg brace, we called it her dancin’ leg. (Cue the ABBA.) Although we never did, some people name their home dialysis machines and their transplanted organs.

Eliana will be mutating into a turtle on June 12. It’s poor timing—too bad we don’t live in the southern hemisphere—but we’ll just have to try to keep her cool and hydrated this summer.

These bone and joint problems cause Hank and I a lot of angst. It’s the unknown, the “maybe this will work,” the ideopathic nature of her scoliosis… It makes me think of the phrase “turtles all the way down,” now one of my favorite sayings thanks to our turtle craze.

“Turtles all the way down” comes from a story, maybe modern or maybe based on a fable, that was recounted most recently by Stephen Hawking in A Brief History of Time:

A well-known scientist (some say it was Bertrand Russell) once gave a public lecture on astronomy. He described how the earth orbits around the sun and how the sun, in turn, orbits around the center of a vast collection of stars called our galaxy. At the end of the lecture, a little old lady at the back of the room got up and said: “What you have told us is rubbish. The world is really a flat plate supported on the back of a giant tortoise.” The scientist gave a superior smile before replying, “What is the tortoise standing on?” “You’re very clever, young man, very clever, ” said the old lady. “But it’s turtles all the way down!” 

I think I love it so much because it reminds me of the nonsense of Lewis Carroll, Jabberwocky and the Mad Hatter’s tea party antics. (Nonsense–that’s an actual literary genre. I still can’t get over that.) If you’re having a bad day, check out the Wikipedia page for “Turtles all the way down,” which has pictures and more versions of the story. If you’re day is going even worse, check out Professor John D. Norton’s logical response to the question whether it could be turtles all the way down–no, seriously. (He teaches in the department of history and philosophy of science at the University of Pittsburgh.)  

Urban dictionary says to use the “turtles all the way down” argument whenever your logic is beginning to fail. I intend to start using it with Shira and Eliana today. 

As far as the serial casting, no one knows whether it will work. It’s turtles all the way down.

 

May 31, 2018 at 1:59 PM 1 comment

Sad Self Care for Special Needs Moms (and One That’s Not)

Monday morning Eliana slept in like she has been recently. I forgot about labs like I have been recently. (In my defense, her numbers have been so good we only have to go once a month, so we have more leeway than we used to to schedule lab visits.)
I was so consumed with everything else on my plate, I overlooked that it would have been the best day to go this week. You know, had we all been up and ready. But instead she went to Dad’s office while I went to an appointment with the surgeon to talk about having my gall bladder removed. And then from there back to pick her up for preschool.
Removal of a vestigial organ: one of the poorest ways to practice self-care, to use of one today’s buzzwords. That and making an appointment to get prescription sunglasses, a goal of mine for the spring since mine are super glued together.
Today we went to Hershey to the orthotist to pick up her new leg brace and drop off new sneakers to have a lift put on. 
Tomorrow morning, off to labs and then Friday my actual self care: a weekend in NY with my big sister, thanks to David’s Refuge, an organization that funds weekend getaways for special needs parents. I was floored last year, the first time I went on a trip like this: two nights in a bed and breakfast and two dinners out, completely funded by David’s Refuge. I told someone recently that while the trip is the bomb, what really got me was the hosts, volunteers from David’s Refuge and people who I’d never met before, who took the time to sit down with me and tell me what a great job I’m doing. In all honesty they could save a lot of money by just calling me on the phone and telling me that once a year. I mean, I’ll drive up to NY this weekend anyway…

April 11, 2018 at 3:17 PM 3 comments

Well said

Lest you think we’re wallowing in speech therapy angst, here are two times recently when Eliana got her thoughts across just fine. That same day she and I were hanging out at the hotel room she waltzed over and cranked the knob on the dishwasher, turning it on. I ran up behind her turned it off, and said, “No, that’s what turns it on,” and she said, “Yeah, and also off.”

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Proof we didn’t spend the whole time in the hotel.

When the begging gets rough Hank likes to pull out “And I want a pony,” a phrase he perfected when Shira was smaller and whinier, always asking for ice cream or a trip to the playground or the movies or another Polly Pockets doodad. Shira always just rolled her eyes or times when she was particularly irked you could see the little angry cloud above her head, but Eliana responded with “But I don’t want a pony.” As in, quit trying to change the subject.

Yeah, sometimes she gets her point across well enough.

June 20, 2017 at 12:51 PM 2 comments

It’s all connected


We’re on a roll! We had a second family vacation last week—Pittsburgh—and it seems  all we came home with is a raging flareup of eczema, lucky Eliana.

 

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The Pittsburgh Zoo and Aquarium

Now that we’re back home, I’m thinking about how her care is all connected. Take speech therapy: She’s almost caught up, according to her therapist. And yet… I’ve noticed lately that she sometimes has trouble explaining to us what she wants, she’ll say things like “Come here” and “Look at that” when she’s got a lot more going on in her head, and I’ve also noticed how much we talk about food and eating, which is another of her delays, so it stands to reason it would be difficult for her to find the right words. She’s still figuring out how to eat, much less talk about it in complete sentences.

 

An example: On vacation she and I spent one day lazing around the hotel room while Shira and Hank went to a meeting (You’ll have to ask the two of them about that.) Eliana was dragging me into the other room of the suite and saying “Come here,” and finally did the sign for eating and said “eat” so that I could understand what she wanted. So is it that she’s having trouble formulating the words or simply recognizing that she’s hungry and eating is what would make her feel better? It’s all connected.

Today at lunch she laughed and said, “You’re eating with your neck!” prompting me to explain I was swallowing my sandwich and she could see me swallowing it. The things normal eaters miss out on.

June 19, 2017 at 3:34 PM 1 comment

Hide-and-seek and catching up

It’s 2017 and we have a lot to catch up on since the previous blog post in September of last year. Our first real family vacation since Eliana was born.

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Eliana and Shira with Sleeping Beauty at Disney World.

Progress on the physical therapy and oral feeding fronts. A bit of swimming to keep active during these dreary winter months.

A little work time carved out for me, both editing and writing. (See the Forward Sisterhood for the latest.) I won’t even mention the colds and ear infections because who wants to hear about that?

I’d rather tell you about Eliana learning how to play Hide-and-Seek—we’ve been trying to teach her every now and then the past few months, and she’s now starting to get the hang of it. The counting part she’s got down. The closing her eyes and not peaking, not so much, and the hiding part, not so much. She can’t help hopping out of her hiding place immediately to find you. Patience isn’t top of any three-year-old’s skill set, though.

We’re also working on the lingo. Instead of “Ready or not, here I come!” Eliana shouts, “Ready or not, come here!”

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Eliana stepping into the zero-entry pool.

January 17, 2017 at 3:52 PM 2 comments

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