Thursday was a good day for Naomi.  We are getting into a good routine with Nanny here to help.  It involves Nanny visiting Naomi alone while Lauryn, Caitriona and me do something together.  Sometimes we play in the family room, or take a walk, or eat a meal, or do laundry.  Then, Nanny and I switch places, usually when Caity is calm enough for her to be handled easily.  Some days, that does not happen and Nanny needs Lauryn to help entertain Caitriona.

No two days are identical, and we have to tweak things based on Caitriona’s behavior and mood, but generally we do the same things each day.  I thought it might be nice to give you a glimpse at our day:

8/9am-10am wake, call nurse for AM update, shower, breakfast, dress kids, pack lunches, call in breakfast order for Naomi to be delivered around 10:30am

9/9:30am – Naomi wakes, takes meds, texts me and Daddy, stays busy until I arrive.

10:30/11am-4:30-5pm – arrive at hospital; wash/dry laundry (a few days per week); help Naomi eat, put away toys, books, etc and organize Naomi’s room, bathe and dress her during noon-2pm pump break (when her medicine is not being infused for the two hour break), disinfect surfaces in her room like the tables and plastic parts of bed, etc; order Naomi lunch, have physical therapy, play therapy with Child Life Specialist and Recreational therapist or Music Therapist, doctors make rounds.  2pm each day she gets a small blood draw to test the levels of her medicine in her system.  We work through her learning goals or play.  Caitriona naps in the family room at the hospital, in her stroller, or in the van depending on where we are and what we are doing.  Lauryn works on her lessons in the family room of the hospital.

5pm-8pm – I go back to hotel to make and eat dinner and feed Lauryn and Caitriona.  Nanny washes dishes.  Kids gets baths and play with toys.  I either call in a dinner order, or lately have been making or buying Naomi’s requested dinner and taking it back with me… Around 8pm, I pack up my night bag to leave again…

10/11pm – Nanny puts Caitriona and Lauryn in bed.

8/9pm-1/2am – I go to the hospital and hang out with Naomi.  We work through the rest of our learning goals for the day, play, watch a movie…. well, she does while I nap!  We always end the night (morning?) the same way.  At midnight, she has her daily blood draw.  By that time, we have turned off the tv and turned on relaxing music.  I fill the diffuser with lavender essential oil, close the curtains and blinds, give her a leg and foot massage with essential oils, clean up her room one last time.  On her dry erase board, we change the day, date, day-count, and we set learning goals for the next day.  I am so proud of Naomi for working on CCD, math, reading and practicing on the keyboard pretty much every day recently.  She is learning the value of setting goals and working through them.  Being productive makes the days go by more quickly and helps us to feel better.  We are not just” getting through the days” but actually progressing in various areas of our personal lives.

Naomi always falls right to sleep when I leave.

2am – I arrive back at the hotel and work on a project.  Sometimes, I have to pay bills, reconcile checkbook, grade schoolwork, assign schoolwork, etc.  I usually get to bed between 3-4am.  Like NOW!