Monthly Archives: November 2017

Kid whining = mommy going nuts

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I don’t like uncertainty. I don’t like to wait. I don’t like ambiguity. In other words, I want answers now. I don’t like to wait and see.

But life keeps throwing me circumstances that require me to “wait and see,” a phrase often used in Ellis’ doctor visits. Our current concern is getting her vocal chord to recover its usage again.

One thing I know for sure is that Ellis’ left vocal chord is not moving. This was evident at an ENT appointment earlier this week: a long thin tube with a camera at the end was inserted into her nose down to her throat. I held her face forward in my lap while a nurse stood behind me holding Ellis’ head steady. The doctor told Ellis it may be slightly ticklish when the line goes into her nose and may even find some boogers while it was there.

She did a charity chuckle. She wasn’t buying any of it. She had two tasks while the camera recorded her vocal chord movements: say “eeeeeee” and drink a few sips of regular water and then the thickened water. It was traumatic: lots of screaming, crying, and rapid breathing.

The camera recording of her throat showed that only the right vocal chord is moving. Normally both the left and right sides open and close shut together to keep food or liquid from entering the airway. But she has a small gap where the right one does not meet the left when it closes. Her body intuitively knows something is not right, so the right vocal chord is compensating for the lack of movement in the left one.

Afterwards, she met with a speech therapist to do a vocal quality test by making different sounds into a microphone. Her voice sounds raspy and breathy because air leaks through the gap in the vocal chords.

Saying “eeeeee” as long as she can into the microphone
Later that day, a visit to the lab for a blood draw
Elliot demonstrating the raptor yell he did to the lab technician for poking Ellis with a needle. I want to hide when he goes into this mode.

Elliot was upset that he couldn’t come to this appointment with us. So I explained that this was not a regular check up that he is used to seeing; this one would have freaked him out. Ellis bravely, with a proud look on her face, described to him what happened at the doctor’s office. Elliot was surprised when he heard that the right side was helping the left and said, “awww, that’s so nice of the right side to do that.”

Her body has gone through a major ordeal, so it’s only natural that recovery takes time. In the meantime, I need to stay vigilant so she doesn’t sneak in gulps of thin liquid; make sure she gets her daily amount of water intake through mouth or stomach tube; remind her to do a slight chin tuck and turn her head to the left so it helps to close the left vocal chord…this is when she absolutely must drink water for sanity purposes (for all of us); and have endless arguments…I mean cordial dialogues…of why she needs to trust me with this.

The whining is wearing me out not to mention the constant monitoring I have to do. I offer her thickened liquid when she wants water. She cries, gives me a mean frown, and yells, “OK, this is the LAST TIME. Tomorrow I want regular water.” After a sip, she presents me with her ever changing requests for pretty things. And so the cycle continues new every day. There is no definite time frame of when it will heal.

I need an attitude change in the meantime. Patience is low and self-criticism is at an all-time high. I feel the need to do more and be more…whatever that means. It’s a constant nagging thought I have that I’m not doing enough. Sigh.

This would be the perfect time to pray although it’s the last thing I want to do. Then there is another side of me that believes God listens and answers prayers of all kinds. He’s done it so many times in mysterious ways! I need to trust that he’ll get me out of this funk soon and replace it with peace that is not driven by life circumstances.

One of the many bible verses that help me remember this:

“Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.”     Philippians 4:6-7

 

 

 

 

Jello water is not regular water

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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.

 

Surprised that pumpkins are also called munchkins.
A barrel ride around the farm.
Upset that I put jello water in her water bottle.
Ready for trick or treating!
We finally made it to the California Academy of Science in SF.