3:00 am
Feed one jar of ketogenic food blend, by gravity through 60ml syringe
+ water flush: 10ml before and 20ml after
6:00 am
Topiramate 37.5 mg (one and half tabs) crushed and mixed with 10ml water
+ water flush 5ml before and 10ml after
Vent Gtube
Feed one jar of ketogenic food blend, by gravity through 60ml syringe
+ water flush: 10ml before and 20ml after
(add 1 drop D vitamin)
8:00am
Omeprazole 5mls
+ water flush 10ml before 15ml after
9:00 am
Phenobarbital 22.5mg (one and half tabs) crushed and mixed with 10ml water
+ water flush: 5ml before and 10ml after
Vent Gtube
Feed one jar of ketogenic food blend, by gravity through 60ml syringe
+ water flush: 10ml before and 20ml after
12:00
Feed one jar of ketogenic food blend, by gravity through 60ml syringe
(add 3grams of PEG to feed)
+ water flush: 10ml before and 20ml after
1:00pm
Nap
3:00pm
Feed one jar of ketogenic food blend, by gravity through 60ml syringe
+ water flush: 10ml before and 20ml after
(add 1ml ultimate omega oil to feed)
6:00pm
Topiramate 37.5 mg (one and half tabs) crushed and mixed with 10ml water
+ water flush 5ml before and 10ml after
Vent Gtube
Feed one jar of ketogenic food blend, by gravity through 60ml syringe
+ water flush: 10ml before and 20ml after
7:00pm
Bath
8:00pm
Omeprazole 5mls
+ water flush 10ml before 15ml after
9:00 pm
Phenobarbital 22.5mg (one and half tabs) crushed and mixed with 10ml water
+ water flush: 5ml before and 10ml after
Vent Gtube
Feed one jar of ketogenic food blend, by gravity through 60ml syringe
+ water flush: 10ml before and 20ml after
Bedtime
His first real food meal was carrots, pears and chicken baby foods mixed with olive oil, mct oil and flaxseed oil. This is a picture of him getting his first "taste". He has been noticeably happier in the last five days since we started the new food. He has also started sleeping through the night! Additionally instead of throwing up two or three times a day, Braxton has only thrown up twice in five day!
The big change for us as parents is that Braxton no longer needs a pump to administer his food. We now use gravity to feed the mixture in through his Gtube with a huge syringe. Only down side is that means I have to get up at 3am to do a feeding, whereas the pump used to do it for me. However, with all the positives that have come out of the new diet, I am happy to make this small sacrifice for my baby.