Our little man did so well today. He ate and drank like a champion and was like a duracel bunny FULL of energy. Today we managed 1580mls orally (860mls water, 500mls purity and 220mls cows milk). Bruce and I are really pleased with the progress he is making. He is getting better and better with his eating with a spoon. Still eats like a little bird opening his mouth ever so slightly but he is opening and he wants it - it's too cute! I was also pleased to try the cows milk tonight and it went down so well. I made a big thing about taking the milk out the fridge and pouring it for him and telling him how a cow makes milk and asking him what sound a cow makes etc. I guess I caught him in my drinking trap because he sat happily drinking the milk (with a syringe still) and had 220mls tonight.
I know I go on about calories and weight but I guess us moms of tube fed children are trained into counting calories and checking weight etc. Anyway his weight has dropped a little. Not much but a drop is a drop and this is because the calories in the purity is not near as much as the paediasure. Paediasure is (418kj per 100mls whereas the purities are at most 396kj per 125mls depending on what one you give). So he is losing out on a lot of calories considering one paediasure feed of 230mls was providing more than 800kj and 1 purity 125mls isn't even 400mls. So I was pleased that I could give him the cows milk tonight without any reaction to it. I am hoping that he will take 200mls in the morning and 200mls in the evening which will add some calories to his daily requirements. We still have to give him his night milk for a while until he is sustaining his weight and able to drop all night feeds. I will probably do the same by reducing it by 50mls a night when we are ready and able to. Also I would like to start doing my own pureed meals but at this stage we are just starting on purity bottled food until he has gotten use to it and mastered the art of eating and then we can think of changing to home cooked pureed meals. I don't want to rush it and put him off the food. Why change a good thing especially too quickly and we have problems. So for now we stick with what we are doing and progress from there.
Otherwise Jason is doing well. I have booked his next polygam for next week already. Can't believe how fast 3 weeks go!! We missed therapies this week because he was too ill but hopefully we will resume both speech and occupational therapy next week as well.
There seems to be a problem with the facebook group. When I am updating the documents on the group apparently the update email notifications aren't going out. Sorry about this I have no idea why, I didn't even know there was such a thing as email updates until last night. Hopefully when I post tonight it will work.