A Day

7:00 a.m Keira is stirring and coughing.

7:30 Change her diaper. Change her sheets (she puked). Take down and trash the used up feeding supplies. Rinse tubing.

8:00 Tube feed her food, water, 3 meds (2 by syringe and one dissolved first in water), and vitamins (first crushed by mortar and pestle then dissolved in hot Keurig water).

8:10 Situate her comfortably so that I can get ready (ensure there is at least one other person in the room with her, her seat is reclined so she can’t launch herself forward too much, make sure her legs and feet are warm enough since her circulation hasn’t been good lately).

8:30 Get her dressed (she doesn’t help with this- try not too pull her limbs too forcefully or pull her hair. She is, after all, not just a baby doll) and brush her teeth with a disinfecting toothette (this makes her laugh). 

8:40 Spray her hair wet, spray in detangler (and lots of it), comb out as many snares as possible before she turns the corner from laughing to crying. Call it good at 80% tangle free. 

8:50 Check diaper bag for diapers, wipes, water, burp tube, feeding tube, food, a hair tie, change of clothes, AFOs, and 2 bottles. 

9:00 Strap Keira in the van. Pick up prescription from the pharmacy (drive thrus are the bomb!). 

9:15 Drive to therapy. Probably in Boise.

10:00 Assist with therapy (one hour of OT, feeding, PT) by encouraging her, trying to motivate her, and teaching therapists to read Keira’s signs and signals. 

11:10 If I’m alone in the car, I pull over to push Keira's head back into an upright position and possibly to burp her. Smooth sailing if Mom is with me.

11:30 Arrive home. (If she’s in a good mood, she laughs when the van bumps up into the driveway. She knows we’re home!) Change diaper. Attempt to feed via bottle (Mom does this) for 20 minutes. Give the rest through the tube along with her water. 

12:00 p.m. Stretch her legs. Do "rhythms."

12:10 Vibrating Vest

12:30 Play in stander (Mom does this). Fax medical records to support broker in hopes of getting Keira’s massage therapy paid for.

12:35 Return phone call to feeding therapist (we’re going to go to twice weekly sessions for a while). 

12:40 Listen to voicemail from Friday group. They're going to screen her on Friday (the only day I work) for daily JumpStart group. Can I be there?

12:45 Call bus company to cancel Keira’s bussing for next Wednesday. I’ll be taking her to school late so that she can meet 2 potential caregivers that I’m interviewing.

1:30 Diaper change. Attempt bottle feeding again. Feed remainder through tube. 

2:00 Nap (for me and for K and for Mom). 

3:00 Afternoon help arrives. Must stay in close proximity to Keira with the appropriate amount of stimulation (singing, iPad apps, playing with brothers, going for a walk, playing in swing) without overdoing it. 

3:10 Left message with GI with update on her weight.

3:15 Talk with case management about a sub for Mom when she goes on vacation next month. Not helpful. Note to self to call back and also to look for help on my own.

3:20 Call medical supply to refill “medical food”

3:30 Tube feeding. Clean all feeding supplies. 

4:00 Burp K. 

6:00 Dad is home. K was getting really hard to please but now she’s happy while she sits and watches us eat dinner. Tube feeding. Diaper change. 

7:00 Put on PJs (if she’s lucky, let's be honest. No complaints from her if she sleeps in her clothes) Bed time. Hook up feeding. Nose spray. 2 meds via syringe. 

7:10 Record caregiver’s hours on online database for reimbursement. 

8:00 Change her clothes/sheets because she vomited.

11:00 Keira screams. Check on her and change her position. Possible leg cramps.

Whew! I laugh at myself as I complete this list and see how long this list is. So often I finish the day and wonder what I did, why my list is so long, and why I'm not doing all of the feeding and therapy and Keira-entertaining on my own. This is a pookin lot of stuff! This is with nothing else mixed in and with the help of 2 assistants. That’s without her being sick. Or overwhelmed. Or needing to go with us to soccer practice or a football game or church.  It doesn't include laundry (Mom usually does my laundry) or cleaning (and I’ve been hiring a cleaning service) or doing any follow up calls or charting for work or getting any exercise or cooking dinner or mothering the boys in any way.

It's a lot! And it takes a village. And life is hard and all of that. Let's all (including me) realize just how much it takes. And how much we do. And as my favorite pastor's wife would say...put the rest on our "grace list." 

And here's your reward for reading this far.