A typical day for our girl begins some time between 7:30 and 8:00, she is awake before then but I get the 2 oldest off to school before I get her out of her bed. She is usually awake around 7:00 but she is so happy in the morning that there is no fussing about wanting to get up.
She gets a clean diaper and then gets her morning round of meds along with some water (all through her feeding tube) to start her day, it's the breakfast of champions. She then gets dressed and gets her hair fixed, those are important steps I didn't want to leave them out.
At 9:00 we drop the G-man off at school and from then on out our schedule varies from day to day. Wednesday is our all day therapy day, we start out at 9:30 with Wet Tots at Lakeshore Foundation and then we go see SK's outpatient occupational therapist at 11:45. We don't usually get home from that day until around 2:30 where we head straight over to a friends house and pick up Grey. Every other Friday we see SK's outpatient physical therapist. Then one other day a week we have a physical therapist, an occupational therapist and a speech therapist that come to our house for therapy on a rotating basis. We also average about two doctor visits a month and we spread those out among the 6 doctors that Sophie Kate sees. We also see therapists and go to different clinics on a less regular schedule through CRS (children's rehabilitation services) as well as participate in Kindermusik on a 6 week rotating schedule. So on any given week, SK and I have anywhere from 2 to 0 days where we get to stay home.
When we do get a day home SK still does not get a day off. She spends time in her stander, spends time on her tummy rolling onto her back, yes it is still one of her favorite tricks. We also work on sitting unassisted (we're still not there yet), playing with light up and musical toys that Sophie can activate herself and usually squeeze in about two 15-30 minute naps.
I try to schedule all of SK's appointments for when the boys are in school, so we usually go and pick up Grey at 1:00 and then go and meet the bus when Cooper and Jacob come home. Sk then likes to throw an absolute fit around 6:00 and usually proceeds to do that for an hour to an hour and a half after which she turns back into her normal, happy, smiley self.
Sophie Kate gets fed all of her food and meds through her feeding tube. Her first feeding is at 9:00am plus meds then she is fed at 12:00, 3:00 plus meds, and 6:00 plus meds and then in between some of those feedings she has to have her water and vitamins. Around 8:30 or 9:00 SK is put in her bed for the night, her food is started and her last med of the day is given. SK is continuously fed a small amount of her food from 9:00pm until 7:00am. During the day SK's stomach cannot handle all of the calories that she requires so feeding a small amount continuously through the night helps us get her much needed calories and fluids in.
I keep a running log all day, everyday, 24 hours a day of what she gets fed and how much water and meds she gets so that I can keep up with everything she is supposed to have in a 24 hour period.
I have to clarify that on the days we are actually at home, SK is usually not dressed with her hair fixed that early in the morning. We have a much more laid back approach on those days. Take today for example, she is still in her little gown with some really big hair that is in desperate need of some taming. Aren't baby pj's so sweet? There's nothing like a warm cuddly baby all snug and cozy in their pjs. Now we are going to continue that trend and get all warm and cozy on the couch and take a nap together b/c guess what....today just happens to be one of our days home this week.