One of the most frequently pinned posts here is A Day in the Life, in which I describe a typical day for us as a family with a medically complex child. So much has changed since I wrote that a year and a half ago- June is walking, climbing, and communicating (signing), she has a g-tube, is NPO (can’t eat by mouth until her trachea fully heals from the LTR surgery this summer) and we have a new little guy here too! So today I am issuing an update in the fun “one photo an hour” format that has been popular for years but, in true 30-something-mom fashion, I only recently learned about. I chose October 30th, and I have (at least) one photo from every hour of our day, plus a description of what we were up to- the medical, the mundane, and the unexpected. My hope is that by sharing a little of our experience, I can provide support, raise awareness, and dispel some of the mystery surrounding the special needs/medically complex life.
I wake up, Rowan is awake*, and we eat breakfast.
I have one baby monitor watching June and one listening to Miles.
Rowan tries to persuade me to take my coffee, breakfast burrito and cheddar biscuit upstairs so we can play Jurassic Park on the computer during breakfast.
*We opt for early bedtimes for the kids (6-7pm) but that *does* translate into early mornings, too. Rowan is up by 6 most days, and June wakes shortly afterward. Miles sleeps a little later some days.
I see on the video monitor that June is awake. We complete her morning routine including turning off the overnight humidifier, turning off the pulse ox and removing the probe, draining the G-button extension, administering her three morning meds via the G-button, changing clothes and diaper, and then grabbing the new feeding bag, new suction catheters, feeding pump and backpack that we need for the day.
While I gather supplies June gets away from me and proudly sneaks some crackers since the baby gate securing the kitchen was still down from the previous night. Much of my day is spent keeping June away from food since she is NPO. Much of June’s day is spent trying to acquire food.
In addition to baby gates securing the kitchen, we keep our kitchen chairs up high or with cushions removed so June can’t use them to reach food (she’s an expert at this).
I mix June’s formula for the day using blender bottles, place June in the high chair and connect her feeding pump to her extension for her morning meal.
I check our pharmacy hours on the web as they were closed the night before when we went to pick up meds. Sadly, new shorter hours are in place.
I feed the dogs, note that one of them is still inexplicably limping, and let them outside.
Miles cries but I find him still sleeping when I check. I sleepily decide it’s a Diet Coke morning.
I sit down to do a lesson on my Signing Online course, but June is signing about reading books and asking here Daddy is. She quickly decides she also wants to watch Baby Signing Time, so I put a DVD on from my instructor set.
I do the 10 minutes of floor exercises that I attempt to fit in each day, and amazingly no one jumps on me while I do.
Rowan eats a snack and the instant he vacates his chair-with-seat, June climbs up to finish his cereal. I remove her and a tantrum ensues.
Everyone needs a diaper change, resulting in a very fragrant aroma near the kids’ rooms. I turn the bathroom fan on, and June walks up and down the hallway outside signing SCARY POTTY.
June’s feeding pump finishes and I remove her milk backpack. She finds and disassembles the backpack, proudly signing MILK.
I nurse Miles.
Now that it’s business hours, I call the durable medical equipment (DME) company about some problems with our last shipment. (This is that part-time job all special needs parents have.)
While I help Rowan disassemble some Legos, June presses Mile’s bouncer down as far as she can, turning it into a baby catapult. I intervene to prevent Miles going airborne.
I sneak away to brush my teeth and put my contacts in.
June tries to steal my cheddar biscuit snack.
I suction June’s trach.
The kids play, and it gets rough when conflict arises with Rowan saying, “JUNE YOU CAN’T TOUCH MY TOYS!” while shoving, and June signing to me STOP, BROTHER HIT AGAIN.
The hospital calls to apologize about a billing error I inquired about earlier this week.
I call our car dealer to follow up on a maintenance letter we received, and I add a carcappointment to Greg and my Google calendars.
June has a tantrum that I won’t let her play with the clean dishes in the new dishwasher.
I prepare and place June’s feeding pump backpack on her for her next feed.
Rowan and I enjoy “smuggling” together.
Rowan asks me to “charge” his iPhone and wonders if it takes pennies. June takes his discarded pennies and places them around Miles in his bouncer. Miles is awakened unpleasantly by these and other gifts
The kids draw together as their contribution to birthday thank you cards, and Rowan tries to convince June to draw on her forehead.
Being unsuccessful in convincing June, Rowan draws on his own forehead.
At point point, everyone was upset about something different, but the details elude me.
June plays with stacking toys while Rowan plays on his LeapPad.
June’s feed ends- I remove the backpack and refrigerate the feed bag.
Another round of diapers.
I receive a follow up call from Medicaid about June’s application. (For a wonderful post on why June would need Medicaid, despite having private insurance and two plan-prepare-saving-oriented parents, see this wonderful post by a fellow special needs parent.)
I slowly work on the written part of the kids’ birthday thank yous.
I nurse Miles, and he drifts back to sleep, guarded from dog noses and sibling presents by the pack-and-play.
The older kids finish playing and sit down to lunch.
June goes down for a nap during which she wears a pulse ox which will alert me if her heart rate or oxygenation venture out of the specified safe ranges.
Rowan and I read the Lorax while June and Miles sleep.
I attempt to nap, but am awakened by Miles needing to nurse.
I download a free augmented communication app for June to try, as recommended by her speech therapist. But it turns out this free version doesn’t work independent of the paid version so I delete it.
June wakes up from her nap and insists on keeping her pulse ox cord on her foot.
Rowan has a tantrum and refuses to go into time out. He loses his Legos as a result.
June is also upset that she can’t eat chocolate.
Someone is upset that a LeapFrog toy is out of batteries so I replace them.
I decide its time for a snack.
June settles down and asks to look at the picture frame on the wall- a favorite past time of hers is signing the “name” (like Grandma) of each person she sees in the photos.
And Rowan likes a busy bag activity I set out.
Sphinx is being unusually tame, and Rowan decides she needs to try on some hats.
I read There’s a Wocket in my Pocket with Rowan and June.
Miles nurses and Rowan plays at app on his phone.
June jumps on the exercise trampoline, asks for chocolate, then ventures outside. Sahara positions herself so she can see all three kids at once. She is, after all, Assistant Mom. June comes back inside when her diaper falls off- she finally agrees to have the pulse ox cord taken off too.
June gets into the kitchen- I suppose one gate was still down from her naptime- and plays with the stinky dog food while Sahara begs.
I work on my phone including returning emails, reading in my Bible app, and laughing at these parenting comics.
Greg is off of work and we have our customary commute phone call about the day so far.
I ask Greg to skip going to the pharmacy despite their shorter hours because I am looking forward to finishing the busy day at home and relaxing.
Rowan plays with Miles, June has fun cleaning up toys, I check on my Facebook pages, and Miles practices smiling at everyone.
Miles has smiling down.
Greg hangs with the kids while I get dinner ready. I discover I ran out of alfredo sauce, so I make the very grown up decision to use left over Papa Johns garlic butter as a pasta topping.
Everyone eats dinner.
While Greg stays at the dinner table with the kids, I prep June’s room for bedtime including filling up the humidifier with water, drawing up her meds, preparing her overnight feeds and preparing her trach care supplies.
Greg and I take turns putting Rowan and June to bed respectively.
While Greg puts Rowan down, I put the kids’ drawings into the completed thank you cards.
Being Friday, Greg, Miles and I settle in to enjoy the week’s spoils collected on the DVR including Blackish, Modern Family and the feature presentation- the Blacklist.
(OK, not a photo, but I already have more than 12 from earlier.)