Saturday, 24 April 2010

can't seem to find the time

to sort out closing the blog, sorting out all the emails to give access to. think i may just have to leave it as it is, but try and provide a private place to link to for showing photos? that's if i can even get the time to sort out all the photos n slideshows etc, anyway just thought i'd throw in an update..

we have a date through for Lewis going back into hospital for reflux tests, 1 is called a PH test? have no idea what that involves, the other test i can't remember what was called?, can any1 tell me what these entail?
i'm not looking forward to going back there not after being home 3 months now, but i'm hoping we'll get to the bottom of some other issues as well, mainly the snotty issue though as he took such a bad snotty attack the other day i panicked so much he struggled so bad with it i'd hate to have seen his sats, then he managed to clear it by vomiting sooo much it got everywhere, poor wee man i hate seeing him like that it's awful seeing him struggling so much to breathe because of it and not being able to help him.

another issue we've figured is, Lewis won't swallow, maybe that's a lot of the snotty issue's problem, he chokes on it because he won't swallow it down. he must swallow a wee bit though because he's not drooling or anything so that must go down? i'm not sure why he won't swallow but in my search of the internet i keep coming across Dysphagia, does any1 have any experience of this with CDH kids? i juust don't feel like we can progress anywhere with oral feeding of any form as lonmg as he won't swallow, he just ends up breathing it in and then it goes down the wrong way and he chokes on it, it's the same with whatever you put in his mouth, such a shame for him struggling with something we do everyday without even thinking about it.

we're also still on 3 hourly feeds but have increased amount slightly only thing is he's only just on the verge between tolerating and not tolerating the amounts, what happens when he needs his amounts increased again, he won't handle even just an extra 5 mils, the only way would be to go 2 hourly and there's just absolutely no way that's possible, during the day yes i could do that, but during the night i just couldn't keep up with it, we only just manage at nights as it is and i don't think they'd give me a pump for night may be worth just asking though.

PLEASE THOUGH IF ANY1 OUT THERE HAS ANY EXPERIENCE OF SWALLOWING ISSUES PLEASE GET IN TOUCH

Hayley and Lewis xxx

Sunday, 4 April 2010

last public update

i thought i'd close the blog from public with a last post (remember to email me if you'd still like to read it), Lewis is sitting here with me as i type whacking the keys, so think this will take a while lol, he's now 20 weeks and 3 days old and we've been home longer now than he was in the hospital and to be honest all that seems like a distant memory, it's only when we look at his photos that we're right back there by his bedside in NICU for 2 months watching him fight for his life not knowing what each day would bring, looking at him now, apart from the NG tube up his nose you wouldn't even know about his start to life.

well i think we may have missed the diaphragm clinic last month because they never bothered to send us an appointment, also haven't heard from speech and language therapy either and still haven't got to the bottom of the snotty problem,
so we're still on 3 hourly feeds which he's keeping down a lot better except when the snotty issues attack then he vomits lots of yukky sticky snot, he's also still refusing everything orally, when he does decide to take something in his mouth he sits with his look of disgust and refuses to swallow and so just ends up choking on it instead,

so having been abandoned by everyone, i have no idea what to do or try, so looks like we'll always be on 3 hourly tube feeds so annoyed by it all to be honest, as for the snotty problem we've been passed round in circles

apart from all that crap Lewis is well, no other CDH related issues for now so fingers crossed it stays like it.
He's still a very good wee boy, doesn't cry for anything he's always very smiley and laidback and sleeps through the night
It's sooo good to see him coming on and progressing, we bought him a jumperoo, expensive but sooo worth it he loves it and took him all of 5 minutes to figure out he had to jump in it so now he jumps like mad and can turn himself in the seat all the way around and i've had to order a lightweight stroller for him, we made a mistake when buying his pram, it's nice and all but it's so bulky and heavy and a nightmare if i'm on my own and trying to get it in and out of the car, it takes up the whole boot space, i don't think it was designed for car use so we'll just use it for going walks and things and keep the stroller in the car lol

nothing much else to report to be honest life is event free and that's the way we like it
but if anyone has ANY feeding tips whatsoever please email me i'll be forever grateful and i'm willing to try ANYTHING.

i'll finish up with some pics
Lewis the night he was born (his very 1st photo)
the day we brought him home
Superbaby, indeed he is
playing while supervising mummy doing the ironing
and more recently 2 of Lewis in his jumperoo (since had to rearrange the living room to make room for all his toys)

Thursday, 1 April 2010

Closing the Blog

within the next week or 2 i'll be closing this blog, not completely, just putting it onto private, so if any1 REALLY wants to keep reading then do get in touch and i'll set up the emails so you can still access the blog.

thanks to all who have been reading since i started this and for comments and prayers etc when Lewis was 1st born, i'm so proud of our wee sunshine warrior xxx

Hayley xx
 

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