Questions relating to food and drink can be found here…
Jacob is now on a liquid feed called Nutrini. He has two types, one that delivers 1 calorie for every ml of liquid, and another for over night, that is higher energy with added fibre. To achieve 500 calories, he has 330ml. The feed rate is set overnight to 33ml/hr to deliver the total over 10 hours. During the day he can manage a faster rate, and is currently on 53ml/hr.
The feed is delivered monthly and so are the syringes we use for medications and water flushes. Suitable storage is needed, as for nappies.
Jacob was able to get into a swimming pool this week. His tummy is all healed at last. He loved it!
Hi, I am a mother of a 6yr old boy called Henry who also has cerebral palsy. He is fed via tube through a button and is on peptisorb nutrini as the nutrini energy didn’t agree with him. I use to feed him through the night but now get all his requirements in during the day as I found the feeding through the night would always disturb him too much. Hope your little guy is doing well, as I know how hard it can be to get the balance just right!
Hi Dawn, Jacob has really settled with his feeding tube and put on quiet a bit of weight. He still suffers a little with constipation, but we have increased his fluid intake, so that should help. I’m amazed at how much he has developed since having the tube fitted. He has much better control of his limbs and his concentration has improved too. How is Henry?
Hi Thomas recently had his weigh in and was13.4kilos not really put on much since the last weigh in, we have all the supplements fortini drinks smoothies and maxijul powder and calogen, just want to ask you guys what else have you done and any tips. He will only have pureed foods and thickened fluids via a dody cup. He has the really calorific yoghurts … Also what quantities are you using the maxijul powder?
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