I haven’t decided if this is a boring idea for post yet…but let’s see. At the end of many of my days I wonder “what the hell happened to this day?” So, if I am wondering this, everyone else must wonder what the hell I do all day.

Yesterday was a bit of an average day for us. It wasn’t a seizure day, where we barely leave the bed, or a day where we were particularly busy with doctor’s visits and so on. It was a day of agonizing calls to medical professionals and insurance, totally bizarre public conversations about Ezzy’s floppiness, my Dad reminding me to eat, and fun with Ezzy’s pony…a pretty typical day all in all.

So let’s try this.

Midnight
Ezzy had fallen asleep in bed with me around 8pm. I kept her in with me because she was twitchy and I though she might have a seizure. But she woke up around 11:30 and would not fall asleep again until around 1:45. I fed her and gave her meds around midnight. She fell asleep lightly around 1:45 but she was tossing and twitching until around 3:00.

6:00am
Ezzy wakes up. I put her over my shoulder and headed to the kitchen. She was smiling a ton while I gave her morning pre-food meds, warmed her food, and made my coffee. I brought her back in bed with me to feed her, play, and snuggle. I also caught up on some communication with  my friend Traci at Feeding Tube Awareness about an outreach project I am hoping to help out with and got final edits on my article at Complex Child Magazine to Susan, the editor.

Spent a bit of time feeling teary from lack of sleep since we let our last night nurse go…Ezzy has be up quite a bit lately.

9:30am
Headed out for a quick errand at the bank. Leaving can be a little bit tough since I have to fit it in between food and meds and nap…and lug lots of things including syringes, an ambu resuscitator bag, oxygen, plus the typical baby stuff. We try to make it fast to get back for food and more meds and nap…but I had time to grab another coffee while we were out (thank the gods).

10:30am
Feed Ezzy “second breakfast” and give meds while we play for a bit. Contact Medicaid regarding an issue with Esmé’s nursing care…on the phone for 45 minutes or so…I play with Ez while I wait on hold.

11:30am
Start trying to put Ez to sleep. It takes a half hour before she is asleep and then another another hour before I am comfortable that she isn’t going to have a seizure, so I can transfer her to her bed.

1:00pm
Take call from our dedicated customer service agent to go over ~$3000 of denied medical coverage for “out of network” doctors, who aren’t actually out of network and expensive genetic tests that were initially declined, then appealed, supposed to be “covered in full” and then not covered in full. Thankfully after months and months of screaming at whatever fool answered the phone in customer service they gave us dedicated customer service agent who actually returns my calls and follows through on what we discuss. I still have to talk to her WAY too often, but she is helpful and quite nice.

1:30pm
Dad brought lunch by. My parents are such an amazing help. He knew it was unlikely that I would eat anything resembling a healthy meal today. Ezzy was sleeping most of the time he was here, so we got to talk a bit and he helped drag me out of my funk. Dad helped me go through the house and look for heat loss culprits. The house has been great…but one story living, which was a choice we made to accommodate Ez’s mobility devices, is not very heat efficient. And in this cold snap our kitchen, especially, has been so cold!

2:30pm
We (embarrassingly) hadn’t gotten the Christmas tree out of the house…because we need both of us to carry it out and another person to be with Ez. Dad took clippers to it so we can move it in smaller pieces! While he did that I cleaned our bathroom…and then Ez woke up before I could finish. We got in some playing and fun!

3:30pm
Warm Ezzy’s food and feed her. Take the return call from my insurance person…there was an error in the way the doctors billed their appointments and once the error is fixed the payments will process. Once off the phone with insurance I have to call the billing for the two doctors to address the errors. While doing this I miss a call from Ez’s nephrologist’s office…the message says some test results are in the nurse needs to discuss them with me. I return the call to discuss the test results and some potential dietary changes we may need to make to help keep the oxalate levels in Ezzy’s body low in order to avoid more kidney stones. We agree for me to diary Esmé’s food and speak with their metabolic dietician soon.

It is funny though, because while the nurse is trying to advise me on dietary changes it appears that I know more than her about the relationship between calcium and oxalate in the blood…and she is listing food that are high in oxalate, but that she has never heard of: “Kale? What’s that?” Me: “A leafy green” Her: “Tempeh? Hmmm, not sure about that one either. Cheese, maybe?” Me: “OK maybe it is easier if I ask you about the foods I do feed her?” Welcome to my life people…

Ez and I play some more…there was giggling involved.

4:00pm
Head out with Ez to get something for dinner and some supplies to better keep the house warm…thermal curtains, etc.

While in line at the Target the woman behind me in line looks at Ezzy and says “She looks like a rag doll sitting there.” I swallow the anger that I always feel when someone comments on this…the lady seems nice and friendly, so I say “Actually she has a medical condition that causes her to be so floppy. It makes it so she can’t sit up well, talk, or eat”
Her: “Oh dear. But she can walk, right?”
Me: “No”
Her: “Will she walk?”
Me: “We don’t know. Her condition is currently undiagnosed, so we don’t have a prognosis”
Her: “Well she is very beautiful and sweet”
Me: “We like her”

I always feel better when I take the time to explain. And this woman did a great job of responding. She didn’t understand, so she asked good questions, she didn’t say “Oh poor baby” or some bullshit about “God only gives…” blah blah blah.

5:30
Quickly put up my energy saving curtains, etc. And get Ez into her gait trainer. We spend an hour with her chasing her birthday balloon around and watching Sesame. My hubby makes it home on the early side of things. My mom swings by with a little present for Ez and visits for a bit while my hubby makes dinner and heats Ezzy’s food.

7:00pm
The three of us eat together. Ezzy stays in her gait trainer most of the time. Then it is time for pjs and bed. I read to Ez, then snuggle and sing until she is soundly asleep and I can transfer her to her crib at 9:30.

By 10:30 I have fallen asleep. I usually do the food and meds around midnight on weeknights, but thankfully my hubby does it since I am unable to keep my eyes open…it’s good I’m able to catch up on sleep since Ez woke up again at 3:00am…and we have a day of appointments ahead of us.

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