Worth every minute- Sophia's Feedings and Medication Schedule

This is Sophia's daily feeding and medication schedule. And remember, for her condition she's doing amazingly well. There are many moms on my global support group who have it MUCH worse than me. Just imagine adding a trache/vent and a handful more medications to all this, for example. Or one mom has twin 18 mo old babies, BOTH with pch (one of which has cerebral palsy in addition). They have 6 children like us...but they're not as spread out as ours. When I look at my day I think about Nicole....and it gives me the courage to work my tail off!

(special needs mom's will relate to this):

5 a.m. stop her feeding machine (her stomach needs to be empty to take medications)
5:30 a.m. erythromycin
6 a.m. feed 2/3 of an ounce
6:45 a.m. VENT her stomach, then feed 1 oz (Sophie can only digest about an ounce an hour)
7:30 a.m. clonazepam, baclofen, ranitidine
7:45 a.m. feed 1 oz
8:45 a.m. VENT, feed 1 oz
9:30 a.m. omeprozal
9:45 a.m. feed 1 oz
10:45 a.m. VENT, feed 1 oz
11:30 a.m. erythromycin
11:45 a.m. feed 1 oz
12:45 p.m. VENT, feed 1 oz
1:30 p.m. clonazepam, baclofen, ranitidine
1:45 p.m. feed 1 oz
2:45 p.m. VENT, feed 1 oz
3:30 p.m. omeprozal
3:45 p.m. feed 1 oz
4:45 p.m. VENT, feed 1 oz
5:30 p.m. erythromycin
5:45 p.m. feed 1 oz
6:45 p.m. VENT, feed 1 oz
7:30 p.m. clonazepam, baclofen, ranitidine
7:45 p.m. hook up to feeding machine
8:30 p.m. phenobarbitol (I have to hold her for an hour and a half while administering this medicine)
10 p.m. adjust feed rate for the night
11 p.m. pause feeding machine
11:30 erythromycin
11:45 start machine again and cross my fingers that Sophia and Max sleep for the next 5 hours and 15 mins (last night was bad, Max alone got up 6 times.....why can't Mormon's drink coffee again?--just kidding I know why! 😉 😛)

Of course this is just feedings and medications. There are  still diaper changes, cleaning her feeding tube site three times a day, vomit to clean up, a bath every other day. Thank goodness her seizures and dystonia are under control for now. Dishes and laundry (I finally broke down and hired a maid for the deep cleaning), a three-year-old to take care of, Michael and Sarah when they get home from school, church stuff and activities, wait....when do I get to shower? Oh...right....😜 Don't forget a relationship to desperately try to keep alive. Mason and Jonah are pretty low-maintenance thank goodness, in fact they help a lot. Jason does all the shopping and the cooking on top of working full time and traveling and I depend heavily on my family and neighbors to get my kids places. And what would I do without my night nurses 5 nights a week?

PHEW! This little angel is worth every minute!