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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

Speech Therapy on the Road

September 29, 2016 at 3:49 PM 2 comments

Pomp and Circumstance for the Intermittently Intelligible

Eliana gets mounds of mail for an almost three year old–some of it addressed to her, not her parents or guardians, which still throws me off because isn’t it illegal to open someone else’s mail?–most of it mind-numbing insurance and medical papers, but occasionally something insightful, like the copy of the report that came in the mail recently from her evaluation for services through the intermediate unit.

The county intermediate unit (IU) is the next step after early intervention, the in-home birth-to-three program for kids with developmental delays and disabilities. Next month Eliana will reach the ripe old age of three and graduate from early intervention. Unfortunately, there’s no ceremony with little caps and gowns, and she doesn’t get to march down the aisle to Pomp and Circumstance and get a tiny diploma. Worse yet, there’s no not graduating, since it’s based on age, not meeting educational requirements, so while her therapists would love to keep working with her, she’s aging out.

The IU therapist who evaluated her wrote in the report that Eliana was “intermittently intelligible to this novel listener.” While I was amused by the typo saying that Eliana ate cheetahs, imagining her on a big-game hunt in Africa rather than crunching Cheez-Its on the couch, Hank latched on to “intermittently intelligible,” and it’s become our new catch phrase. I mean, aren’t we all at best only intermittently intelligible? I even suggested we consider renaming the blog.

This week I came across a therapy facility in a magazine and called to see if Eliana could get in there. I had a long conversation with the woman who answered the phone, and one of her questions was what’s Eliana’s diagnosis. I rattled off the name of her syndrome, mentioned heart defects and scoliosis, and by the time I got to the fourth diagnosis I paused, said, “Uhhh…” and started laughing at myself for being intermittently intelligible.

Communicating is actually really hard sometimes when you’re a special needs parent. You never know what the other person knows. I belong to an online group of moms whose children have heart defects, many of them much more serious than Eliana’s, and half the time I don’t understand the posts, between the acronyms for diagnoses she doesn’t have and the different procedures and treatments. Even among a group of peers, we’re only intermittently intelligible.

Back on the phone, I immediately regretted laughing and hoped the woman understood I was laughing at my own faulty speech, not the long list of diagnoses. Thank goodness the person on the other end of the line happened to be another special needs mom who simply said she’d love to give Eliana a hug. Guess I got my point across.

June 26, 2016 at 1:10 PM 1 comment

One Year Kidneyversary!

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Because of an organ donor, Eliana can giggle with her sister under the covers.
Because of an organ donor, Eliana is learning to ride a tricycle.
Because of an organ donor, Eliana is.

This was Eliana one year ago this morning waiting for surgery to get her new kidney.

And Eliana running around today  at Wildwood Lake.

May 20, 2016 at 3:28 PM 3 comments

C is for Cookie

I took Eliana—who was all sorts of grumpy from not sleeping well last night—shopping because what else is there to do early on a dreary weekday morning when one of you has a headache and the other one won’t stop hollering? (Seriously, if you have any better ideas, please let me know. We’ve already been to the library this week.)
At 9 am, Target and the Salvation Army were open, so that’s where we went. My deal-of-the-day was an oversize husband pillow that looks like it was made out of Cookie Monster, $5.99 from the Salvation Army. (Oh, in case you’re wigged out about bedbugs: I put it in the dryer for 30 minutes on high. Experts say that’s hot enough to kill any bugs and their eggs.) It was worth $5.99 just to lug the enormous Cookie Monster hide, which wouldn’t even fit in the cart, through the aisles of the Salvation Army with Ana yelling “have it, have it,” like she was cheering about the ten-pointer we’d bagged.
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“Oh, they gonna have fun with that,” the lady in front of us said at the checkout. Mm-hmm. Cookie Monster may not solve all the world’s problems (ahem, Donald Trump is the presumptive Republican presidential nominee), but he’s not a bad monster to have around when you’re down. Plus he’s tech savvy, as we found out in the iPhone 6 commercial, so maybe he’s following this blog.
It’s a Cookie Monster kind of month—he’ll be at Burger King in a couple of weeks for National Chocolate Chip Cookie Day (Sunday, May 15). Hopefully we can make it there after nap, but if not, we can snuggle on the Cookie Monster pillow with cookies and milk.

May 4, 2016 at 1:44 PM 1 comment

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