Diaphragm Clinic Update

When Lewis was discharged from NICU in January, we were told he'd go to the diaphragm clinic every month to start with, then it would go to 3 monthly, then 6 monthy then hopefully yearly, so he was discharged in January, we went to the diaphragm clinic in February.....and haven't been since....till now, so to say it's long overdue is an understatement, always been worried incase his lungs weren't quite growing as they should etc.......
so Friday he had Diaphragm clinic, got there to be told he didn't have an appointment....OMG yes he does and we're not going till he's had it!!!! we got seen lol, first visit was to the weighing and measuring area, pleased to say that since following the same percentile all year, he has now climbed up to the next one and his height is on par with his weight, so he's perfectly proportioned, he's underweight for his age but at least he's on the charts as a LOT of these babies aren't even on it, plus he's a wee shortarse like his parents :)

Next was Physiotherapist and Speech and Language Therapist (SALT), SALT is very happy with him apart from not eating but that's such a common thing for these babies so it's nothing out the ordinary for a diaphragm baby and they know that, she's going to get in touch with the SALT from where we live, as she seems to have went AWOL on us???
Physio also noticed what we have, he's flat on his right foot which is fine, but his left foot he ALWAYS goes on tiptoes, so she's referred us to physio where we live (which we should have been referred to when he was 1st discharged from NICU cos of the delay in things for him given that he was hooked up to life support so long! also another few wee exercises she gave us to do with him as he won't go on or near his tummy at all we need to learn him how to sit up from lying a different way etc, she's pleased with him every other way though and SALT is happy with his 'speech' and vocal sounds.

Next visit was to Xray, he was sooo good, didn't kick up a fuss when the sand bag was put on his legs to hold them down or when i had to hold his arms and head, he just lay there, it was over in seconds, not once did he complain about being dressed and undressed for every area, such a good wee boy. I will write about the Xray results in a second.

Next was in to see his consultant, he's happy with the shape of his chest and though it's a bit messed up it's only as much as he'd expect, the big dent he has is due to there being muscle missing as that's what they used to repair his diaphragm, we've to stop his final reflux medicine, well to wean it down first lol, i told him about Lewis still refluxing past his fundo 2 months after he had the operation, he says that's fine as it's only very small amounts, he said it's like a safety feature, he has to be able to get past it if he's ill and needing to be sick etc so of course he can still reflux through it but it is only a tiny amount and certainly not on the scale it was, that was BAD, then he brought the xray up on the screen so i went for a peek,

well it looks absolutely fantastic, both his lungs were squashed during the pregnancy and underdeveloped, no1 thought he even had a left lung, until he had his repair when they found the left lung was just a bud, so barely anything of it at all......so in a year, this wee bud has grown sooo much, the right lung is bigger than left still but it's not far off it....they'll continue to grow for another couple of years and if it continues to grow at the rate it has been then it will be close to normal, he said it won't ever be normal but it'll be soo close it won't matter :) the best news ever, they're so pleased with him, he's to go back in 6 months and he'll have his Gtube taking out and replaced with the more discreet Mic-key button (and a friend has found some fab wee covers for these) HERE xx Also he said the diaphragm repair is holding up well so no obvious signs of imminent reherniation, though he says that's not to say it won't happen :s

So that's the update, 1st time we've seen his lungs in sooooo long and they're doing fab, he's doin fab he truly truly truly is our MIRACLE sunshine warrior :)

MERRY XMAS xxxx