It’s all connected

June 19, 2017 at 3:34 PM 1 comment

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.



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.


Entry filed under: Uncategorized.

Hide-and-seek and catching up Well said

1 Comment Add your own

  • 1. Suzanne Gruneberg  |  June 19, 2017 at 7:58 PM

    Dear Amy,
    Thank you for the interesting comments about vacation! Glad you came to Pittsburgh (Did you happen to see the Stanley Cup about town?)! But I wish I had known you were here. I would have LOVED to meet all of you in person.
    It’s amazing what you have shared about Eliana, Shira, and yourselves. Your observations reflect the compassion and joy you find in all of the things most of us just take for granted. Thank you for letting us share your journey.
    Please know that your family is always in my family’s thoughts and prayers. Have a GREAT rest of the summer!


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