Go, Go Gadget!

Q: What do (certain) old people and (certain) young people have in common?

A: A surprising number of mobility devices.

For weeks, Eliana has been just on the cusp of getting her walk on, but she just hasn’t quite been able to figure it out.  She’s standing up like a champ, and even cruising a few awkward steps at a time, but that was about it.  Today one of her therapists brought her this go go gadget walker (also sometimes known as a gait trainer) that looks suspiciously like one recently used by…um…a close relative of mine.


Did it work for her?  Oh yeah.  Here are a couple of videos from just a few hours later – one coming towards you, and one walking off into the metaphorical sunset (also known as bedtime).

Enjoy – and I suspect there might be more than one of you giving her a”go go go” while you watch.



November 19, 2015 at 10:32 PM 8 comments

Oxymoron – hold the Oxy

So…it’s true that different folks may choose to “keep kosher” to varying degrees of observance.  But one of the pretty universal rules even for the least strict kosher-keeper is that pork products are not permitted.

Which makes this product just a touch confusing – note the Kosher symbol highlighted in the bottom center.

“Kosher Shake ‘n Bake, for all your kosher pork!”


November 4, 2015 at 8:25 AM 3 comments

5045 Words

Why yes, I am in midair.

Why yes, I am in midair.

Just a thinly disguised opportunity to share some recent pictures.  5 pictures at 1000 words each, plus 45 words of captions (and these).

Shira and Eliana covered with leaves

After the leaf fight


Just chillin, thanks!

Just chillin, thanks!









 Before the Sugar Rush

Before the Sugar Rush (middle one isn’t ours)





November 2, 2015 at 10:04 PM 4 comments

I can do that!

Yesterday was Eliana’s annual evaluation for early intervention services, and she was in rare form, bubbly and full of energy and charming the evaluators. They run through a series of tests, all the while asking me questions, everything from “How does she sleep?” to “Can she identify 5, 10, 15 objects in a book?” And then, without skipping a beat, they pull all of this information together, evaluate it, and determine where Eliana falls on the bell curve in five developmental areas, all while continuously saying, “She’s so darn cute!”

At one point one therapist asked, “Can she crawl?” plopping her down on hands and knees. “Yup,” Eliana must have been thinking, because she immediately crawled right over to me! I said she must be lying. She’s never done anything more than get up on her hands and knees, at which point we’d help her move her hands and feet to give her the idea of crawling.

What else can this kid do?

(In case you were wondering, this post’s title is brought to you by A Chorus Line … “I watched my sis go pitterpat. Said I can do that.”)

October 21, 2015 at 2:38 PM 3 comments

Wonder Twin Powers Activate!

Wonder TwinsEliana has lots of contact with people – in her own way.  There are the phlebotomists, receptionists and other blood work patients twice a week, four therapists, three or four nurses a week, parents and kids at the bus stop, various family visits and the miscellaneous folks she’ll run into if she’s out with us.

You’ll notice there aren’t a whole lot of other two-year olds in that list, but on those occasions where she is around a little kid she seems more aware than ever that she might be missing out on something.  The thing about kids her age is that they’re just so…so…icky.  I get the heebie-jeebies just thinking about putting her immune system (and the rest of her) in a room with a bunch of ooky toddlers and their germs.  She’s definitely coming along – the doctors have cut back on another one of her anti-ick medications recently – but we’re still trying to figure out how to work her into some social situations with a minimal infection risk.

In the meantime, though, she’s finally discovered the joy of mirrors.  She’s messed with them a little in the past, but all of a sudden in the past week or two she’s really figured out how to interact with that other little kid on the other side.  Not only does she pose (this is her best “Wonder Twins and Kitty” pose), but she talks, too.  Vocabulary in this one is a little limited, but at least she’s friendly…

Stay tuned for posts on some other awesome milestone-type achievements.

October 21, 2015 at 7:07 AM 2 comments

Shira Lerner, LGC*

One key therapist was missing from the last post: Shira, our occupational, physical, speech, and feeding therapist working without a license. Nothing beats sister therapy–and Shira isn’t your average sister. She braved the halls of the NICU with us from day one. She’s spent a lot of her summer days and free time outside of school schlepping to doctor’s appointments and the hospital. She knows more about tube feeds and kidney disease than most adults. More than once a therapist has told me “maybe Shira can help with that.”

Like last week, when Eliana’s feeding therapist said, “Let’s try gum.”

“OK,” I was thinking, “I guess I can fish it out of Eliana’s mouth when she’s done.” But then she pulled out a square of cheesecloth and tied the gum in it, similar to one of those mesh feeding pacifiers they have for toddlers.

“Shira is going to be so jealous Eliana can have gum,” I said. Shira got braces the week before and was told no more gum–but why not, in the cheesecloth pouch where it won’t get stuck to the braces?

Eliana didn’t want anything to do with the gum, even after the therapist showed her how to chew on it. Can’t say I blame her; it is pretty weird.

But later when Shira got home from school, she was all over the cheesecloth gum idea, so of course Eliana gamefully gave a couple chomps on her piece. I guess the moral is nothing beats the excitement of a preteen with braces learning a way she can chew gum.

Siblings of special needs kids can get lost in the mix, between drawing up meds every morning and night, chasing after the toddler with a feeding pump, talking on the phone to insurers, nurse, schedulers. It’s hard to make time for fun things with the healthy child when the other one requires so much time and effort just to maintain a somewhat normal life at home.

Shira has a knack for knowing when I’m at the end of my rope, and then she swoops in, saves the day, and totes Eliana off to funland. It’d be supremely annoying, like the rich uncle’s all fun and games visits, except that both girls are so darn cute and lovable. Not only is Shira engaging, and a good gum-chewing role model, she knows her sister like no one else does. She knows what Eliana’s capable of. At age 10, Shira can take care of Eliana better than a caregiver who doesn’t know her, her health history and developmental delays.

Parents of special needs kids often talk about how much the child has taught them and how their lives have changed for the better and have more value, and while that’s true, today I am celebrating the normal sister, the one who does all that and rocks fifth grade, climbs trees, plays French horn and piano, goes to Hebrew school, learns to ride a bike, reads a book a day it seems, does urban gymnastics, and like every other 10-year-old finds plenty of time to play Minecraft.

*Licensed Gum Chewer

October 5, 2015 at 12:37 PM 2 comments

The Beat Goes On

So…it’s been about 4 months since Eliana’s transplant.  You might be wondering “how’s it going?”

I’ve tried a few analogies, but let’s use this one today.  It’s like the feeling you get when there’s been a week of steady rain, but suddenly the rain stops, the clouds part, the sun comes out…and a half-hour later you’re covered with mosquitos on a day that’s 95 degrees with 100% humidity.  And you’re not sure whether there will end up being a flood or not.

One the one hand, things are very good.  The kidney is still working awesomely, and lots of other stuff is coming along nicely.  But now we have to work our way through the ever-lengthening “we’ll worry about that after transplant” to-do list.  Here’s a taste.

  • Eating (Feeding Therapist):  As part of this therapy she’s also receiving VitalStim therapy to help train her neck muscles. (I call it electro-shock therapy but I’m not supposed to.)
  • Speech (Speech Therapist; Feeding Therapist):  She’s still a little indistinct, but has virtually caught up to her age with words, phrases and understanding.  A side effect of VitalStim therapy is that kids often get much more vocal afterwards, so it’s helpful to have both.
  • Walking (Physical Therapist; Occupational Therapist):  Ain’t there yet, and frankly, it’s starting to get a little annoying to have to haul her everywhere.  Especially since it’s hard to ignore her clearly enunciated demands for “UP” and “OUTSIDE” over and over again.  Dang speech therapy.  Turns out there’s a good reason for the difficulty, though. Which leads to…
  • Spine/Leg Length (Orthopedist; Orthotist; Physical Therapist): She’s had quite the curve in her spine for a long time, and we finally have an appointment with the orthopedist to take a look.  Then one day the physical therapist took a close look at Eliana’s legs and it turns out her right leg is a couple of centimeters shorter than her left one.  Funny that – probably explains why she stands on her right toes instead of keeping her foot flat.  Looks like she’ll have several sets of braces and lifts for the time being until we see how things shake out.
    • (Amusing story here.  One of her nephrologists is fanatical about getting an “accurate” length at each visit.  He always remeasures after the nurse is done, always gets a different number, and always enters his as correct.  Wonder how many times the nurse measured one leg and he measured the other?)
  • Infectious disease control (Parents):  You think we were tough on visitors before transplant? Wait ’til you see us with an immune-suppressed baby during cold and flu season. Even freakier when you consider things like this recent article about infections in transplant patients.

So…better?  Absolutely.  But different.  Hard to complain when you see scenes like these, though.

IMG_20150927_084351 IMG_20150919_104449

September 27, 2015 at 6:25 PM 1 comment

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