I get asked about once a month, what a typical day looks like with the twins, often by parents who are new to the special needs world. So – to be better prepared for that question, and to give our friends and family a closer look…here’s “a day” in the life with Liss!
2:30 am: Landon’s monitor is alarming. I check on him and his heart rate is low. He’s bouncing between 45-60 bpm. I check to be sure the sensor is picking up well, he is warm enough, and his oxygen sats are good. He’s doing fine, and a low rate isn’t uncommon for him. He alarms for heart rate or oxygen level most nights. If it had been oxygen, I could have put him back on a low flow cannula for the rest of the night. (Having oxygen at the house has been so helpful!)
5:30 am: Up for the day. I check on the boys and refill their feeding bags with the next 4 hour quantity. (They are fed via G-tube 24 hours per day, currently at a rate of 30 ml per hour). Landon peeks out, so I turn their ceiling light on.
6:30 am: After showering and getting big brother on the road to school with daddy (I would typically head out the door with them and hand off with our day nurse), it’s time to get the morning routine started.
- Change diapers, and put in a 2×2 to catch urine for their ketone test.
- CPT vest for 20 minutes at settings of 12/5. This helps break up fluids and phlem, and they seem to enjoy it!
- Cough Assist to help expand their lungs, and move any junk that is settling in.
- Pulmicort via nebulizer to ward off seasonal allergies
- Toothbrushing/oral care, complete with suction.
- Strip them down, wash them off, and get them dressed for the day.
- Lotion for their dry skin, check the g-tube site.
- During this process, stretch their arms, legs, and necks as Nolan in particular wakes up stiff.
- Landon has already had a wet diaper again, and his ketones are large. (Which is the goal for our ketogenic diet).
8:00 am: Routine is done, and the boys are settled down on a play mat with some bright and musical toys. Time for morning meds:
- Landon: Keppra, Onfi (both for seizures)
- Nolan: Onfi (seizures) Prevacid (reflux)
9:00 am: I’ve checked a few work emails, had one work phone call, and laundry load 2 is in the wash. Coffee is down (while still warm!) The boys are playing/resting happily, so I call Express Scripts to work on transferring some of their allergy meds to 90 day mail order. We refilled at the higher penalty price at Walmart, and I don’t want to pay that again! The call goes great, and will save us a lot on Rx costs. I follow up by calling the primary care physician to warn them their confirmation will be needed.
9:45 am: I help the boys pull to a sitting position a few times, and help them hold an assisted sit to work on neck strength. I also change out their surroundings and choose mostly toys that make noise or crinkle.
10:00 am: Add 4 hours worth of milk to their bags. Time for CitraK crystals. This provides nutritional assistance needed for the ketogenic diet they are on. It’s also a chance to flush a bit more water for the boys.
We play and cuddle. I have the best cuddlers around!! Ideally they would be in their standers for some weight bearing time, but they’ve grown so much that we have to have them re-fitted, with an appt in home next week.
12:00 pm: I give miralax, and a water flush. We spend a lot of time worrying about dirty diapers around here! Regularity can be an issue for a lot of reasons, (their diet, their lack of mobility, their low tone, and the meds). Letting them get “behind” can lead to a lot of problems, so we have a proactive routine.
12:30 pm: The boys are in fresh diapers, stretched, and sitting in their high/low seats. (Leckey squiggles seating system.) They have push button/switch toys on their tables
I have music on as well. We are silly for a bit!
1:00 pm: Bottles have been washed, next round of keto is chilling in the fridge. The boys take ratios of 3.5:1 (Landon) and 3.75:1 (Nolan). We measure closely (down to the ml) to get that accurate.
2:00 pm: G-tube bags are empty, so it’s time to make the daily switch out. Add 4 hours worth of milk to their new bags. Followed by a little power point action, and another pass at emails for work.
Our primary Dr office calls to confirm the mail order Rx information is as we need it to be.
2:30 pm: I call anthem to ask some questions about equipment. We are pursuing wheelchairs by this fall, adjustable twin size beds whenever we can get them, and a convertible van to accommodate the wheelchairs. We are saving hard to be prepared for as much of the cost as we can, but are also hopeful insurance will help with the wheelchairs, and the disability program may help with part of the van conversion (if we first buy a new vehicle).
At my recommendation, we are going to re-enroll in the insurance care coordination program while this durable medical equipment process is ongoing. I have a follow up with care coordination on Monday at 11:30. I also need to call our Dr office back and ask them to kick off the pre-certification process. This insurance call took 49 minutes…so I had time to bake brownies.
Regardless of the administrative details, we are excited to be talking about positive changes in the coming months.
It’s time for some cuddling before big brother and daddy return!
4:00 pm: The boys have fresh diapers, and are stretching out on the couch together. They love being there, and often get vocal and smiley.
Nolan drifts in and out of sleep, and has some seizure/spasm activity when waking.
5:00 pm: Daddy, big brother and I work out. Then we clean up and start our Friday night ritual – pizza and a movie! Big brother makes sure everyone has a light saber.
6:00 pm: Add 4 hours worth of milk to their bags. I also flush a little water, and reposition the boys. Diaper for Nolan again.
8:00 pm: Medicine time!
- Landon: Keppra, Onfi (both for seizures), Zyrtec (allergies), Vitamins
- Nolan: Onfi (seizures), Zyrtec (allergies), Vitamins
8:30 pm: Move to bed and start the night time routine. They almost always smile/sigh when we put them in bed. You can tell it is a comfortable/known space. Nolan is smiling below, and Landon yawned for dramatic effect.
- Fresh Diapers.
- CPT vest for 20 minutes each just like the morning.
- Cough Assist.
- Toothbrushing/oral care, complete with suction.
- Flonase and chapstick
- Tucked in with their ceiling light shining overhead!
10:00 pm: Add their nightly food (8 hrs worth)
11:30 pm: Landon’s alarm goes off. By the time I make it to the door it has stopped. All is well.
So that’s a day for us! Being a special needs mom is busy, and at times difficult. But as you know – being a MOM is busy, and at times difficult. Aside from the occasional emotional stress or financial circumstance that isn’t typical…most of our days are good days. And the bad days…we’ve learned to take in stride. Our life is different, and to most, not normal – but it is good.
I’m reminded of some of my favorite song lyrics. At the start of each day, I don’t know what is coming, or if it will be a good day or a challenging one. But I hope that at the end of the day, I’m still able to praise Him and sing my song.
The sun comes up
It’s a new day dawning
It’s time to sing Your song again
Whatever may pass
And whatever lies before me
Let me be singing
When the evening comes