Since my last blog entry, the kids and I have been running around town enjoying our newfound freedom. We’re still wary of colds and viruses for Ellis’ sake, but we’re not afraid like we used to be.

(update: 2 weeks after I started writing this entry…Elliot just finished his 5 days of antibiotics for bronchitis. Ellis caught it from him and aspirated from water she sips in secret. Mama’s usual paranoia made a quick comeback.)

The one thing I absolutely wanted to do this autumn was visit a pumpkin patch – on a farm. Previously, we’ve only been to the seasonal pop-up pumpkin patches on vacant lots around town. They’re fun too with their assortment of pumpkins and other activities, but it doesn’t feel like the real thing. An actual farm setting would have less traffic noise, less fences, and less concrete.

We finally crossed off pumpkin patch on our list of to-do activities! It involved a hay ride on a tractor around the sunflower and corn fields, playing on hay stacks, and riding new rides by themselves (first time ever), and exploring different kinds of pumpkins. Ellis enjoyed the setting but she would’ve been happier if she could drink regular water like the rest of us. Every time she sipped her thickened water from a thermos, she would whine, cry, or get angry.

Other than the water ordeal, Ellis is doing great. She’s still on the thickened liquid till her vocal chord heals. It’s uncertain how long it will take to heal or how to fix it in the meantime. She asks me constantly why everyone drinks regular water but why does she need to drink “yucky, jello water.” I’ve learned to keep electronics away from her durung these fits: she tries to throw my computer to the floor, yank off chargers, or press a bunch of random keys.

I remind her, with a forced gentle tone in my voice, that this will not last forever. It’s to keep her healthy, which means we can go adventuring together to fun places.

She nods yes, but two seconds later, she repeats the same question. I then talk about how her lungs don’t like water, but regular water could sneak in there and make her sick. It’s as though she’s making up stuff about what I’m explaining. She asks, “What’s lungs? Is that inside my body?” In her mind, I’m probably the stingy witch who gluttonously drinks water herself but withholds this precious commodity from her parched daughter. The evil laugh is shrouded in long-winded talks about health and lungs.

I anticipate therapy sessions for all of us. However, as she matures, I hope she realizes how hard it was for me to say “no,” when the first thing I want to do is give in to her simple request. Doctors tell me to supplement her hydration by giving water through her stomach tube if she refuses the thickened liquid; I can’t even begin to imagine how that feels.

In my internet search of finding pre-thickened liquids, I learned that difficulty swallowing is more common than I assumed and can stem from various causes. I found thickened coffee too, decaf and caffeinated kinds. As a coffee lover, I don’t know what to make of that. But I’m sure that if that’s the only coffee to drink, I’d buy them  by the crates. I may even learn to savor the taste.

She makes an effort to drink it. When she holds the straw to her mouth, Elliot and I begin our cheering chant. “Go, Ellis, go! Go, Ellis, go!” After she takes a quick sip, looking very focused with her eyes closed and nose squished, we finish with a group hug and tell her we’re very proud of her. Now she wants us to cheer every time. Oh this DIVA!

Through these experiences, we’ve all learned to become caretakers in our own ways. I thought Elliot would resent his sister getting a lot of attention, but he’s proving to be a good big brother: playing along and making a big fuss over her. Other than that, usual squabbles still occur and sibling competition is fierce. Having grown up as an only child, it’s interesting to observe the constantly shifting dynamics of love and hate between them.

 

Trying to get a butterfly to land on his finger.

 

 

 

 

 

 

 

 

 

 

10 thoughts on “Jello water is just not the same as regular water

  1. I love reading about your family!!! Esther, so sorry your kids got sick… and that Ellis still can’t have liquids. Still thinking about her and praying for her!! You too!! Miss you tons! I’ll have to make my way over there soon!!!! Coffee/Paris Baguette night?? Gotta introduce you to Philz!

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    1. I wanted the kids to have fun, but it backfired on me too quickly! I should’ve paced myself,..realization in hindsight.
      Thanks for reading and for leaving sweet comments! Love it. Coffee night sounds great. I have to check out this Philz coffee. Such a creature of habit here. Hope you’re having a good month of November…

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  2. AWWWW!! I love the bond between Elliot and Ellis! So sorry to hear about bronchitis… It’s so heartbreaking to hear that Ellis is still struggling with jello water. Will continue to pray for hear vocal chords to heal quickly! Miss you guys~

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    1. These guys keep me entertained but they are a handful!! But I’m learning so much about sibling relationships by watching them…it’s up and down, but most of the time they’re very protective of each other. This water struggle is affecting everyone at home. Thanks for your prayers and for all the coffee/ breakfast runs you did for me while we were at the hospital!!

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  3. Seems like yesterday I saw a photo of Ellis just after major surgery and now she’s playing in a pumpkin patch – natures miraculous healing powers…the power of the life force in all of us…incredible…
    Thank you for reminding us that we can support each other …despite our momentary struggles, large, small…support gets us through to the other side – onwards beautiful family…can’t wait to read the next stream of thoughts from mom…always with love, Pamela

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    1. I can’t believe how quickly she recovered too! People, but kids more so, are resilient when they are challenged. She has less nightmares but she constantly asks when is her next shot, is this just a check up, will it be another heart fix.
      Thanks for all your encouragement since my time in NYC.! You taught me so much about how it’s ok to be me, to embrace uncertainties, and how to be a good friend. Love ya!

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  4. Aw man, bronchitis?!? Must have happened after all that Halloween fun we had together. Bummer! Hope everyone is feeling 100% soon. Lots of love to you all as always.

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    1. I think it was a combination of all our outings! But trick or treating together was a blast with you guys. Loved the costumes you and the girls wore. Thanks for letting me wear the Rapunzel wig for the first 30 minutes.
      Everyone is better now! I wasn’t surprised his cold required antibiotics. His colds usually turn into croup or bronchitis. Take care and lots of love to you my sweet neighbor!

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  5. I might be too immature, but I am glad that there is some progress and your family cleared off the to do list of pumpkin (in spite of bronchitis). Go, go, go, Esther’s family! I really do hope that everything goes well with your family.

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    1. Hey YounJung! So glad you stopped by my blog.
      Yes, we have checked off some must-do fall activities finally! Kids think it’ll take too long for Christmas to come, but I’m still in disbelief that a year has almost passed. It goes too fast!! I hope you enjoy this cooler weather with your family. Miss you lady!

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