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Friday, 1 April 2011

New Boots and a scary announcement

Well we picked up Lewis's special boots from the physio on Wednesday, they are so tiny and cute, also so very stiff, but that's the idea, specially ordered in through physio as they're much stiffer than any you could buy in the shops.

We're still weaning him into them and today was his '3 hours' in them, increasing an hour everyday. He's doing well in them and we can see a difference when he's stood up now his feet are properly supported.


Haven't really mentioned anything about his reflux for a while as we've been trying to figure out what's going on...he had the fundoplication in July 2010, which made a big difference and stopped the reflux completely for 2 months, then he started getting past it every couple of days, then it was couple of times a day and when he had his last consultant appointment in December all his reflux meds were stopped, then it started......he hasn't had a full nights sleep from about a week since the meds were stopped, we put it down to teething and he has had 4 big teeth pop through in the past month, but no sign of anymore for now, but still restless and crying on and off all night, he's still bringing up really really sticky bubble mucous at least 3 times a day, choking on it because it's so sticky and bubbly, then panicking trying to fight it and it ends up going down the wrong way, it's just aawful and can get really scary :(, his nappies are absolutely vile, as is his breath, sometimes he brings up his feed within a minute or 2 of getting it, sometimes he brings up the water we give him through his tube, so we're suspecting reflux again but more of a silent type as opposed to how it was before his fundo when it was milk fountains every single feed, he never seemed in any pain from it then, but now he does and he cries everytime he sees a syringe :( after he's been fed he just lies there like he's so full and looks like he's feeling really sick and uncomfortable but he only gets 30mils at 12pm, 3pm and 6pm as that's all he'll tolerate, he's on the feeding pump from 9pm till 9am, we're at 41 mils an hour as that's his toleration when relaxed and asleep, so he doesn't get very much 30 mils is nothing really and every 3 hours, it's like he's still on newborn feeds.


ok so the announcement......Lewis is going to be a big brother...again but better news so far this time, we're just 13 weeks and will have our anomaly slightly earlier in about 4 weeks time, absolutely terrified for that wondering what the problem will be this time, our 5th pregnancy and so far only have 1 survivor, Lewis xx but trying to just enjoy the next 4 weeks knowing that at this precise moment we don't know if anything's wrong, plus i picked up a beautiful wee heartbeat on the doppler 2 nights ago, so we have bonding on the agenda for the next 4 weeks :) have had a few scans so far and my plan of care is excellent and i'm under the best of doctors who listen to me and do all they can to 'help' xx

3 comments:

bobdoble said...

Prayers with this pregnancy! I hope that in four weeks you will have some peace of mind after the ultrasound!

Caroline said...

Hello haylz. Glad things r going well for u and that u r feeling confident enough to share your lovely news.

Are those boots 'pedro's'? Hope tried them for a bit, but they aren't as nice on little girls.

Good luck with the reflux :0/ tis not fair he's still suffering the consequences of the nasty cdh

Much love

Xxx

Hayley said...

yes Caroline they're pedros, not so good in this lovely weather we're having, far too hot for him to have them on his feet, but needs must so he has them on for short times of outside. i am AMAZED at how quickly these boots have made such a big difference :)

 

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