Elizabeth (age 9) and Morgane (age 7) 

Propionic Acidemia

A day in our life…

The morning starts around 5:30a.

Elizabeth and Morgane are unhooked from their night feed and are told they are going to wake up in a little bit. The feeding bags are replaced with new ones for the day. One of the four bottles made the night before is pulled out of the fridge. Water is also added to their feeding bags to include extra water needed to fill the tubing and not run out before their dose is done. By now, all medications are memorized, but the medication app does help keep me in check. Their morning medications are drawn up and ready to go, now to go wake up the girls as I pick out their clothes for the day. Morgane is an early riser and will be up with the sun. Elizabeth would rather sleep in until mid-morning. Morgane gets up and starts talking about how she is going to wake up her sister and then realizes just how hungry she is. After getting dressed she heads to the living room and tries for the 30th time that week to get her pickle chips for her first morning snack. So, we go through the list of food she has available to her in the morning and lands fruit snacks, 2 or 3 pouches. While Morgane gets settled with a snack, she is hooked up for her first breakfast, along with Disney+ on the tv and her iPad in hand. Now we wake the dragon. Elizabeth must be woken up gently, or the whole neighborhood can hear her. The whole neighborhood hears her either way, who am I kidding. She gets dressed and heads out to her chair in the living room to get hooked up. Sometimes she will have a few goldfish first thing in the morning, sometimes she is content to just watch tv. Meds are doled out and then we start on hair. Morgane usually volunteers Elizabeth to be the first to get her hair done. Since Elizabeth got her hair cut, there have been fewer tears when the brush comes out. This mom is thankful for this easy do. It’s a matter of getting her hair to lay down and not look like bedhead, before a headband goes on or hair clips. Whether they stay in all day is another matter. Then it is Morgane’s turn to sit in the ‘hair chair’ that I had from my childhood. I ask Morgane if she wants one or two pony’s. She will usually say one. Sometimes I listen, but other times I put in two, because she looks super cute with pigtails. Next comes socks, AFOs and shoes on. We try to match the socks somewhat to the outfit of the day. I finish getting myself ready to head out to work and get their coolers ready for school. Depending on the day, the girls take one or two bottles of formula to school. If they take two bottles, they will get one medication at school, if they take one bottle, they will get that medication during the therapy they left school early for. Dad puts the girls on the bus so I can leave to get to work by 7:30a. Teamwork is what gets the girls to where they need to be.

On any given day, there is communication between us and the school, therapists, doctor’s offices, and pharmacies.

On any given day, I could get text reminders about ordering medications, or scheduled appointments for various providers.

Along with some communications from school, we can sometimes get random pictures during the day. I love getting to see a glimpse of their days at school. I am reassured knowing the girls are well loved and well cared for at school. It’s apparent that Elizabeth and Morgane are happy and feel safe going to school.

By the time school ends, their home health nurse is waiting at the house ready for the bus to drop them off. One of my favorite things to do is to watch Liz and Morgie get off the bus and walk into the house on the ring doorbell. Morgane usually runs into the house full force, while Elizabeth saunters up the sidewalk with the nurse, who is carrying both of the girls’ backpacks. From the times of Covid, Elizabeth and Morgane have been used to wearing masks at school, to avoid some of those heavy hitting viruses. The school nurse has kept us informed of the virus trends going on at school. Last school year, it seemed like they wore their masks for most of the school year.  Elizabeth and Morgane are pretty good about keeping their masks on.

Morgane’s first snack request is usually pickle chips or ‘ramen’ noodles as soon as she gets off the bus. During school, the nurse takes care of the girls until they go to bed at 8:00p. The nurse gets their medications ready for their evening feed and set up their pumps with their formula. Having the nurse come to the house and take care of the girls offers me the opportunity to get some errands ran, or a chance to get some things done around the house, or maybe to get a much-needed nap.

Before putting their heads on their pillows, melatonin is given. After Elizabeth’s transplant, she would be up for hours after going to bed without the sleep aid. We usually listen to lullaby music on Pandora as they fall asleep. While Morgane is the first to wake up and is usually the first to fall asleep. After they fall asleep, they might be 45 minutes to an hour of time to watch my own shows that are not animated before getting bottles, lids and other dishes washed. Now I am ready to start on their individualized formula recipes. Each one has four bottles made up for the following day, along with their overnight feed. Morgane is allotted 15 grams of protein daily, and what she doesn’t eat during the day gets added to her overnight feed. Most days Morgie gets all 15 grams of protein eaten. Willow, our dog, knows the nightly routine and can be ready to go to bed as soon as she sees me walking to the bedroom. I’ll scroll through social media or play a quick game on my phone before turning my phone off, hopefully before midnight and get some sleep myself only to start all over again the next day.

Anna
anna.lizzol@gmail.com
Kansas

From the Summer 2025 OAA Newsletter