#6
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hi daniel, no she did not have nasal tube she still can not eat lumps and waiting to have some more tests done as see why she as trouble swallowing some days! tbh its so much eaiser to feed her.

we have gone through about 30 mickys since its been put in lol they think its her tummy killing them, we change our selfs now though, and as she is mobile and as some kind of seizures we can not use the pump unless she strapped in . which is why she keeps losing weightSad

sorry not got back sooner i promise i will come back now !
#7
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(12-30-2009, 06:25 PM)jacknchloesmum Wrote: hi daniel, no she did not have nasal tube she still can not eat lumps and waiting to have some more tests done as see why she as trouble swallowing some days! tbh its so much eaiser to feed her.

we have gone through about 30 mickys since its been put in lol they think its her tummy killing them, we change our selfs now though, and as she is mobile and as some kind of seizures we can not use the pump unless she strapped in . which is why she keeps losing weightSad

sorry not got back sooner i promise i will come back now !

I know it sounds daft but have you considered using a car seat for use at home in which she could sit it to watch the television but have the pump on?
We have had to use this alot in the summer,strapped in and driving for hours just to get the fluid down!!!
Boleus feeds are another option for you.
Weight managment is such a tough thing and its so muh harder than anybody could imagine.
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#8
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lol yes we have just done that she can only take little at a time and we do Boleus feeds all the time at moment little and often, plus when shes ill she done or can not tolerate anything only water and it can last a weekSad but we are working on things!

how is your boy with his tube how much do you get in in 24 hours?
#9
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well euan eats tones better now so manages his weight that way, we used to feed him 1litre of nutrini over 10 hours in a night. he was always sick 1st thing, even with anti sickness. And like you said, every time he was ill its like starting over again. i still put fluid down it and he tolerates water better than feed, can put the pump on about 250ml/hour and drive lol. euan dehydrates really quick so the button is very usefull except when its sickness because it comes back up. We use it for his meds too, stops him having to wake up in the night! when i bolus feed him i can put 300ml down in an hour and a half.

xx


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