Monday, 30 August 2010

2 top teeth :)

just a quick update
well the other top tooth made an appearance the day after the 1st one and he has now discovered how to grind his teeth eeewwwww i hate it it's horrible and i have no idea how to make him stop it :s
he's still not eating either, can't believe he was doing so well just after he got out of hospital as well then went right back to not wanting anything near him, SALT women said on thursday that she doesn't have anymore suggestions, can these people really be sooo rubbish? i mean they've only ever gave us 1 suggestion, and just repeated it every month when they've came out and now say they don't have anymore suggestions, wtf? there HAS to be more? ah well back to google for me :s she doesn't agree with giving him lots of different flavours, but health visitor seems to be in a bit of a disagreemenbt with her, SALT wants us to only give lewis baby rice and porridge, he doesn't like either has never shown an interest in it, my opinion is he needs to experience lots of different flavours (and hope he discovers somethin he likes) and also lots of different textures, who knows, she did say we could be looking at him going to school and seeing other kids eat before he does, yeh she's very optimistic...NOT, so looks like i'm on my own again with this.

well the feeding pump is going great, what a difference, he's only tolerating 65 mils an hour over 8 hours and has breakfast, lunch and dinner times (to play with food seeing as he won't eat it) at the same times as us then we do his bolus feeds, we would like him to be on more throught the night so we can reduce the amounts he gets at his bolus feeds during the day and hopefully he can get hungry and experience that and learn that food stops the hunger, well we live in hope something will work and i figured the best place to start would be to have him getting hungry.

so that's about it for now, he has his post op checkup on wednesday and hoping we can persuade them to do his CDH checks while we're there as they haven't been done since february!!! just be nice to see how his lungs are doing.

Tuesday, 24 August 2010

Feeding Pump Bliss


well on Friday morning i took delivery of a nice shiny feeding pump and a box of giving sets :) then in the afternoon i had a visit from a man who trained me on using it, i will just say WHAT A HUGE DIFFERENCE this is making, had my 1st whole night sleep in forever and it's better for Lewis as well as before, with his tummy still tender he was waking up during the night as we fed him and he was crying etc but now as it goes in slowly over 8 hours he barely knows and so he's back to the way he was before his fundo, sleeping right through, we started off on friday night with 30 mils an hour then night night up to 40 then next 50 etc, last night he was on 60 mils an hour, therefore reducing the amount he needs through the day, so now he'd down to just 3 milk feeds through the day at proper meal times, breakfast, lunch and dinner, introducing him to the world of 'normal' feeding times, we'll slowly get up to so much through the night i'm not sure what the target is, so that he'll actually feel hungry through the day, which we hope may help in the learning to eat process, so he will eventually learn eating satisfies hunger, i'm so glad i pushed for this, it was all my idea just has taking some time to actually get it to happen and glad every1 is on side and agrees with my plan, let's just hope it works :)

Yesterday Lewis's top left tooth made a little appearance through the gum and i think in the next couple of days the 1 beside it will be through as well, if it isn't already this morning, i'll have a look when he gets up, i'm sure he has a couple coming on the bottom beside his front ones as well, but to be fair he's taking it all in his stride, it's not bothering him at all, a friend said this is because in comparison to everything he's been through already this is nothing, so true.

He wanted his bed earlier last night so bathed him a bit earlier and put him to bed and he's still sleeping now at 8.30am so had 13 hours so far, lazy bones :)

We were away meeting some fab SANDS ladies on saturday and the above picture is Lewis table licking lol so funny, weird how he'll lick and chew on everything except food!!

Monday, 16 August 2010

Back to Not Eating

so before Lewis was born i heard the phrase 'CDH is a rollercoaster' a lot, well isn't that just a huge understatement, just wish things could be easy for once, afer his wee spell of eating everything, we thought that would be it, surely now he knows he can enjoy it he won't look back, WRONG!! he got my cold, he only got it mild but it was enough to put him off his food....he stopped eating and hasn't eaten since, he's not interested whatseover, back to going mad everytime you dare put somethin near him.
He's a bit more back to his old self now, so he's getting there slowly but surely
before we left the hospital we were told the community nurses would be out 2 days later, but nope they never came and that was nearly 3 weeks ago now, he also never gained any weight in a month, but we put that down to he was still being sick then he was in for his operation and he probably had put on weight but with all that he'd lost it again,
at the minute he's still quite uncomfy when he gets a lot of milk put down his tube, so we're sort of been bordering going back on 3 hourly feeds, but managing to JUST get by without doing that for now.

we're off on saturday morning to go meet some lovely ladies i met through SANDS just after losing Nathan, and we pick our new shiny car up on thursday can't wait :)

Friday, 6 August 2010

good stuff and bad stuff

well the good news is Lewis got home on the 28th July the bad is he's still been showing discomfort etc, he's miserable all the time and still has the runs poor wee thing, so he's being bothered by the top (teeth) middle (tummy) and bottom, he just moans all the time and randomly screams here and there, all through the night as well, just want to take him back and tell them to undo everything they done so i can have my happy smiley little boy back, hate seeing him upset and miserable all the time xx
we also have other good news on the Lewis front, since a week ago today he has been eating, and seems he just wants everything in sight, even though he's not eating very much he really goes for it when he does, and he's now decided he does like the little yoghurts after all and can devour half of 1 of the little pots, all this off a spoon as well, so suddenly and out the blue, he used to just go nuts whenever a spoon went near him or whenever food went near him, so thinking it was just a 1 off all week but he's eaten somethin everyday for a week, he's only taking like a teaspoon all in then he's knackered but it is hard work for him having to use muscles he's never really used before, so hopefully with some more practice every day he'll get better and start eating more.

Even more proud of him he's been through so much, he's just my little hero :0)
 

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