Happy Birthday to Uke!

Today is Eliana’s birthday. She entered the world 2190 days ago (that’s 6 years, for those not into math), and things haven’t been the same since.

Obviously.

Of course she’s been dying for presents, presents, PRESENTS as the big day has gotten closer. So what did we give her today?

A ukulele.

Obviously.

How does that gift explain where our lives are at the moment? Let me count the ways.

  • Music, music, music. Like her parents and sister, Eliana is into music. As Shira is fresh from another yearly installment of summer music camp and totally getting into high school marching band, Eliana has been expanding from singing (LOUDLY) to playing along on the piano and her “little guitar” (her previous cheapo plastic uke that started falling apart shortly after we got it). Nothing quite so fun as listening while she sets up a drum beat on the electric piano, sings made up lyrics to her made up song, and strums along on the ukelele. And it’s her summer of funk (music, not smell just yet), so she sings and ukes along to James Brown when given the chance.

  • Use your inside voice. While her singing is often not done in her inside voice, it’s still done inside. A lot. The scoliosis cast will likely be on through at least the end of the calendar year, so this marks the second summer of no swimming and serious sweat avoidance. We’ve had to adapt a lot of activities (last week involved a breakfast picnic and nature walk), and target gifts geared to fun inside activities – like music – since we can’t really do a lot of the traditional summer outings.
  • Little things mean a lot. Eliana is little, so her new instrument is little. But more than that, we have moved to a strategy of doing/having have a bunch of smaller and less expensive things to cycle in and out of her routine to keep things fresh, rather than a just few big items (yay thrift stores!). And we try to do different little trips or visits each week in lieu of camps (though Eliana will get to experiment with her first couple of camps this year – carefully selected to avoid most of her restrictions).
  • Abby Normal. Just when we think we have a plan and things are running along nicely, somebody drops a brain and we end up heading down a path no one expected. (If you don’t get the reference you definitely need the link.) Not many people have to plan around so many issues, obstacles and speed bumps when selecting gifts for their 6-year-old, but our normal is Abby Normal so we’re going to make the best of it no matter what. I’m thinking the first Lerner Family Band number will be Puttin’ on the Ritz. But who plays the monster?…
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July 16, 2019 at 10:52 PM 1 comment

Watermelon Man

Eliana’s occupational therapist gave her students a packet of projects to work on over the summer, and this goofy watermelon man collage was one of them.

img_20190707_093532828-2The art project quickly moved to a lesson on jazz music.  Herbie Hancock’s “Watermelon Man” came out in 1962. Thanks to a clip of an interview on YouTube, we learned that the  memorable piano riff that starts the song echoed the wagon wheels of the watermelon man’s cart on the flagstone streets of Chicago, where Herbie Hancock grew up, and the trumpet call is the women leaning out their windows calling, “Hey, watermelon man.”

It’s a watermelon kind of summer. Last month Eliana had her tonsils removed, and her love of watermelon (wallamelon, she calls it) has done her good during the recovery. It has been so swelteringly hot and swampy, we haven’t spent much time outside since her surgery, but at least having watermelon in the fridge reminds us it’s still summer.

Summer can be tough for all kids—and parents—between the boredom, cost of camps, the summer slide. It’s especially tough for kids with special needs, as this  Washington Post article explains: The unbearable cost of summer camp for children with special needs.

This is Eliana’s second summer with the cast for scoliosis,  and once again, she can’t swim or be out in the heat too long, so that eliminates most summer camps. I’ve patched together summer plans that meet her needs, but I’ll admit it has been unbearably difficult. Trying to schedule things day to day and having no routine, figuring out if she can do a camp or attend an event and still meet all her daily needs—it wears on you. Thank goodness for Herbie Hancock and the watermelon man.

July 7, 2019 at 11:03 AM 3 comments

The short list:
1. Eliana has gotten sick less than a month into the school year.
2. It stinks when your kid gets sick.
3. Projectile sneezing is real.

The rest of the story:
It more than stinks when your medically complex kid gets sick. This is Eliana’s first cold with the scoliosis cast. Thinking ahead, I asked about this last spring before she got the cast. The answer: If it turns into pneumonia, they remove the cast until she recovers. Otherwise, it stinks getting a cold and having a cast constricting your torso.  (This is on top of the usual concerns of someone with kidney disease post transplant, mainly risks of dehydration or that this common cold could be a more serious illness that would cause other complications or lead to kidney failure.) In another universe, we’d be complaining about the school district not closing for Rosh Hashanah and the closings on heat advisory days. Instead, today, I’m grateful that she seems a little better and hopeful that she can go back to school tomorrow.

September 13, 2018 at 9:15 AM 2 comments

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
img_20180622_101052541img_20180622_111716255img_20180622_094256101img_20180622_102801523

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

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