It is the little things that consume my day

Do you have a day when you felt like you were busy, hardly sat down but not sure exactly what got done? Lots of little things consume my days for Brayden. Even if he is having a good day (no appointments, ER, etc.), the needs of his life leave us busy.

Yesterday,

• Woke up Brayden to get him ready for school, about a 45-60 minute process to have him loaded on the bus by 7:10 a.m. Just as the bus is pulling up, Brayden has a dirty diaper...unbuckle all of his chair. Attempt to change his diaper without completely taking off his pants because then I would have to take off his shoes and AFOs.
• Then get Carter off to school. Get Luke ready for the day, he goes to kindergarten in the afternoon so he is usually stuck with me running errands with me in the morning.
• Officially out the door and head to the pediatrician's office to drop off some stuff and pick up paperwork for Brayden. Talk to the pediatrician for a bit.

• Then drive to the lab to pick up our "poo collecting kit".
• Drive back to Waterford for Luke to catch the bus.
• Clean Brayden's linens from the morning's explosive diaper, scrubbing, soaking (and considering what can be tossed out)
• Get Brayden off the bus, into bed, suction stomach for 20 minutes, flushing tubes, changing, etc.
• On the phone for awhile trying to set up appointments, without success

• Brayden's feeding supplies are delivered. The glass bottles are broken and leaked all over everything. The broken bottles are his Microlipids (little jars of fat), the leakage over everything left a greasy film. Have to let those be for a moment.
• Head to the bus stop to pick up Carter and Luke.
• Homework time with Carter and Luke.
• Back to cleaning up the feeding supplies. Spread all the supplies out on the counter top and rinse them in the sink and use cleaning supplies to get off the greasy film.
• Calling the medical supply company to report the broken bottles and order more. First person on the phone transferred me, next person transferred me and then I was told to call the local branch...start all over...transfer, transfer and finally talk to someone. They will replace the broken bottles (I am thinking that they need to supply a person to come clean up the mess).
• Back to the laundry, one more scrub and wash, hoping Brayden's linens come clean.
• Wait, dinner, I need to make dinner.
• Eat dinner, clean up.
• Get Brayden ready for bed, then Carter and Luke.
• Load things up for school the following day.
• Crash in front of the TV.

That does not even include the seizures, a bit of vomit, several diaper changes, several times a day of flushing his tube, carrying him up and down the stairs, propping him in bed or getting him situated in his chair, hooking up his feeding,...

Start all over again the next day.