December Update

So i'm not getting to update the blog as often as i should, but there's not so much happening in order to update so often, which is a good thing, no news is definitely good news as far as CDH goes.
well Lewis is now finally on the move, he's bum shuffling and can get wherever he wants to go, over to his toys to tip every single 1 out on the floorm, the chaos lol but it's great it's just the best thing ever to see him doing this, so funny seeing him 'bumming' along the floor xx
At least he has found a way of getting around, lack of upper body strength due to the surgeries means he struggles holding his weight on his arms, and also it's uncomfy for him lying on his tummy with a big old feeding tube poking out of it, plus i guess with his tummy being all misshaped can't be too comfy either. round the time he 'should' have been learning to get around he was in having another major operation so that set him back. better late than never though.

Finally the runs have stopped, like the day before we got his feed changed to try and stop it lol, he is now on Frebini which has a higher calorie content than the infatrini, so it means the volume has been cut a lot, which is great just what i wanted since he started throwing up past his nissen fundo, so back to the cycle of being fed, gagging, choking, bringing up feed, aspirating into his lungs, so coughing mucous up from his lungs trying to clear them ugh, hope so much he will be able to cope with the lesser volume of the new feed, therefore no throwing up past the nissen fundo, therefore no aspiration, wouldn't be called a rollercoaster if things ran smoothly though.
Talking of the new feed we had our 1st delivery of it this morning, not 1 spare bottle, they clearly don't take into account for spills etc or the fact that these bottle never have exactly 200 mils in them, so means what we end up short with come the end of the month i'll have to make up with his old feed which luckily i have some left, but that won't last forever either, we had this discussion when we 1st started getting his old feed delivered and after getting onto the dietician about it changed it so we'd have some spare, so here we go again!! stupid extra stresses we don't need and shouldn't have to worry about.

He has an appointment at Yorkhill on the 17th, for....wait for it..... the CDH clinic woohoo effin finally, the aftercare is bad, he hasn't been to the CDH clinic since february, 1 month after getting home from NICU, terrible. We're fortunate he keeps good general health though, he definitely has my immune system, both Ben and Ricky have been sick in the last couple months and neither me or Lewis has had anything lol, Lewis has had his Flu jabs this year but isn't to get the RSV 1 which i'm gutted about as we all know what RSV can do to these babies with delicate lungs, hell i know what it can do to a healthy baby after meeting a mum when we Lewis was in.
So as he's not getting the RSV then i'm not taking him anywhere we don't HAVE to go, missed the health visitor clinic this week, just not risking it, i should really invest in a set of home baby scales so we can keep an eye on his weight for the dietician.

So that's about it for now, we're making this xmas like Lewis's 1st xmas seeing as he was in NICU last xmas, so it'll be Lewis's 2nd 1st xmas this year lol and he's going to be very very spoiled :)