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lexielamb - that is very helpful thank you hunni xx

rclifford - my lil man has never hit any of his milestones he didnt smile till he was 4 months and hes only just started eating decently and hes 20 months but i put charlies gastrostomy off for a few months as i didnt want him to have 1 but he needed 1 as he was ng fed so completly diff but if u do go for it id advise you not be 'lazy' and give him feeds via gastrostomy esp if hes liking food its took me almost 2 years to get charlie to like food, just use it as a back up andnothing else xx
Heart my 2 boys so much
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In answer to both your questions Matt's quality of life hasn't really changed since he had the gastrostomy. He still goes out to play in the garden and even goes to a mainstream school. We found having the mic-key was much better than the peg. Yes you can get infections and we did at the start but our community nurse was brilliant and gave us the idea to bandage around the site every day (yes it means extra time getting him ready in the mornings) but he has no infections. We clean it in the morning bandage it up then clean again in the evening and take the bandage off. We have found we are not getting as much infections as we did with the peg. As for having a gastrostomy and refusing food it depends on the child. Matt's tube-fed at lunchtime because he just won't eat. He eats a normal breakfast & dinner. We always try food first and only use tube-feeds to top up his nutrients etc. We introduce food then later in the day tube-feed. He used to use sign language but has gone on to speak sentences now (he's 3 1/2). Hope i have helped both of you. Feel free to message me if either or you have any more questions xx
Heart Mum to Abigail 8 & Matthew 4. He stops breathing & needs to be resucitated. Has Bulbar Palsy & was born with a hole in his stomach, has mic-key tube fitted. Matt has heart/lung problems and is also tube-fed.
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just thought i would let you know my little girl has had a peg tube for four years they are meant to stay in for three years although appreciate that they end up looking really grubby. We have been lucky and isabella has not had any infections. However i have thought about the mickey as they are more discrete but as isabella is still on continous feeds it wouldnt be that good for her as she also pulls on it constantly. in relation to matt i would say that whilst i dont think it would effect the quality of life i would stress that it is an operation they are given an anaesthetic and a tube is put down the throat into the stomach and th tube is inserted from the inside out. These tend to be inserted for long periods of time, all i would suggest you really think about it as whilst its a relatively simple operation all operations have risks and this medication will be a long term thing that will become easier in time,. maybe talk to your speach and language therapist on alternative ways to try and encourage them to take their meds and hopefully when they get a bit older this will understand the importance in the meds and it will be easier to reason with them. i understand its hard and you know your child better than anyone so just think about the reasons for doing it and trust your instincts

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