#16
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That's from me (lucy) by the way.....dan had logged in on my fone and I didn't realise! Lol xx
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#17
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oh dear, poor euan and must be awful for you both in ways i cant even imagine. is he likely to have these problems for life or do the doctors think he might only have them for so many years? is it down to him now eating or because of his problems he doesnt want to. (sorry i havent looked at that other thread yet). now this is probably not near the same, my dad has problems with his stomach. he has had half of it removed (big scars like frankinstein), but still acid seeps into his lungs. he has reflux (i think its called that) - and hes sick alot. he has so many other problems too and every month from the doctors he has a carrier bag full of meds.
also back to the thread my son slept fine, but my daughter fell asleep for 11.30 pm but woke up at 1 am wide awake. so i put her a dvd on and she bounced round the bed, then at some point i must have passed out because i woke up and she was down stairs with her dad asleep on the sofa. she had been awake for hours with him. then this morning my oldest son said she had woke him by picking his nose and trying to poke his eyes. 6 months ago i couldnt say she was like this at all.
#18
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you don't think theres anything worrying her or been any changes? perhaps its just a phase!? (hopefully for your sake Smile ) I know euan goes through worse times than normal, sometimes he wakes every hour and others he sleeps for a few, sometimes he shouts, sometimes hes an angel (although that is very rare lol). I bet your son loved having his nose picked lol i can think of better ways to be woken!

Euan does eat now, he didn't used to but he won't take all his meds orally and needs such a massive fluid intake that he is better off with his button and pump. its very common in children with cystinosis to have feeding problems. He had failure to thrive aswell before he was diagnosed so he had to have an NG tube down to feed him and bring his weight up to what it should be. He eats tones now which is good but causes alot of problems as his older sister just can't understand why he can eat so much and she can't.....but he doesnt put on any weight or grow and she would be awfully over weight if she ate like him!

Yes its called gastro reflux, it can be really bad. Euan had it as a baby lol (hes had EVERYTHING i think) it kept him in scbu for 3 weeks because it caused him to have apnea episodes. He was effectively holding his breath because he was in pain. It also caused him to have neumonia (that was initially why they kept him in scbu before they found the reflux) His SATs used to drop to 30 and he would turn blue for a while after feeding....not a nice thing to watch your baby go through especially when they are SO small!

His younger brother on the other hand is a big fat chunk, he is 4months now and nearly the same size as him! He was 10lb 6oz born though....so he was always ment to be big Big Grin

xx

xx
#19
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whoa very nice healthly weight, my son spent a few days on scbu. he was born 8lb 15oz, so huge baby when we were there. that was a bad time, but he only had an infection but he reacted so badly i was told he might not live. he got lots better by boxing day. so i know it must be much worse when they are tiny and tubes everywhere.
#20
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Euan was 8lb 1oz when in scbu so big for there too Big Grin all the stuff was tight on him because his head was bigger than your average scbu baby! There was another term baby in there at the time too, don't think they knew what had hit them lol xx


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