We go nonstop from morning to night. From 4 am until 1 am, someone in our household is awake and doing something. Jeremy wakes up first, getting ready for work in the weeeeee hours. I am not a morning person, but my goal is to get up at 6 am to feed David. Often, the rap song "Every Day I'm Hustlin'" is stuck in my head.
Both Donnie and David start the day off with breakfast. David wakes up first to eat and we do some therapeutic activities, then he goes back to sleep for a while. Donnie wakes up around 7 am. After Donnie eats breakfast, it is time for a round of diaper changes, playtime for Donnie, and David gets more exercises...and so on. The entire day is a continuous cycle of meals, tube feedings, exercises, diaper changes, playtime, washing dishes, changing clothes and if I'm lucky, food prep and cleaning.
Depending on how much is done, at certain points during the day, "Eye of the Tiger" is a good song. Not that I play it, it is just stuck in my head, swirling around with all the toddler songs I've been singing all day. This has become one of my many mantras, as the day seems to throw things at us that can be quite unexpected. A few days ago, we started off the day with three feeding syringe explosions, me injuring myself a few times (because I am a klutz) and finally, the blender exploded with soapy water and fried my computer.
Generally, at about 11:30, Donnie takes a nap, and David and I use that time to really get into his therapy program. We do many vision exercises in a darkened room, and lots of slides on the inclined floor. I will dedicate a whole post to David's activities, including pictures, but for now, continue on with me...
After David's first afternoon feeding, Donnie wakes up and eats lunch. If the schedule and the weather permits, we take some time to soak up the sun outside in the back yard. This is a favorite for all!!
Once inside, David eats again, we do tactile exercises, and both boys enjoy story time. Well, David is a little more engaged in the reading material, as Donnie is more interested in bouncing on couch cushions and looking out the window, etc. He pleasantly surprised us the other evening when he came walking through the living room saying "Go, go go!" He was carrying the P.D. Eastman book, "Go, Dog. Go!"
Next round. Everyone is cranky and hungry and it is almost time for supper. This is the time for more diapers, cooking supper, getting any unwashed dishes clean so the sink is ready for the evening deluge of pots, pans, cups..basically what seems like every item in the cupboard! Donnie is a fantastic little helper. His latest duty is bringing needed items to mom and dad, and throwing away trash, and finding really interesting things in the trash. He does a lot of learning in the kitchen, while David is in the living room on his "floor," which is a large piece of smooth masonite that facilitates movement during tummy time. This is David's time to try out new things or rest, depending on his mood. I'm happy to report that today while on the floor, he lifted his head for twenty seconds!! A new record!!!
We try to eat supper as a family on a regular basis. Everyone looks forward to this little piece of together time, as we catch up on the day or just chow down! David has been tolerating the high chair, so he and Donnie sit side by side, and Donnie shares his food with his brother. It has been a great opportunity to introduce new tastes to David and get those taste buds working. David usually falls asleep shortly after we start eating, then hangs out with Dad while Donnie gets a bath.
Donnie's bedtime is 8:00. Lately, David has been going to sleep around 7:30 pm, and receiving his last feed in his sleep. Next, one of us will do trach care and give him a bath. After David is in bed, I clean up the kitchen and fold about three loads of laundry that were churning throughout the day. Jeremy is engaged in a school meeting, homework or preparing for work the next day. The time now is close to 10:30. When it is all done, I walk into the middle of the house, raise my arms in triumph and shout (in a whisper) "Yes!" Then it is onto the bathrooms, vacuuming, or correspondence and research. I usually hit the sack around 1 am. Whew!!