Raygen's Schedule: (Our family Schedule, lol!)
5:30am 160ml water/prune juice/miralax mix
7:00am: 200ml food Bolus/40ml water flush with lasix
10:00am: 190ml food Bolus/40ml water flush
12-12:30: Try to get Raygen to eat a jar of baby food
1:00pm: 60ml food bolus/40ml water flush
Hopefully a nap
3-3:30pm: Try to get Raygen to eat another jar of baby food
4:00pm: 60ml food bolus/40ml water flush
6-6:30: Jar of baby food
7:00pm: 120ml water flush with miralax
10:00pm:200 food bolus with 40ml flush plus her aspirin
in bed by 10:30pm--most nights
**Also offer her the bottle through out the day**
So my life revolves around this schedule. Somedays it works great other days we make it work. It's hard to get her to eat by mouth when were out and about for appointments, but when we can stay at home or at work this works out pretty well.
It is a balancing act for sure. Along with keeping up with doctor appointments, therapy and feeding schedules I'm also working full time and have another daughter to take care of. Too say most days I feel like I'm running a marathon would be an understatement.
Thank goodness for my husband. He is a huge help especially in the mornings. He makes Raygen's blended food for the day and gives her miralax and first food bolus so I can get ready. I really miss him when he has to leave early for work and I have to do it all.