1st visit to the Diaphragm Clinic

yesterday was Lewis's 1st appointment at the Diaphragm clinic,  when we got there we were sent along for xray, Lewis was soooo good lying still and we were in and out in like 5 minutes, then we headed back to the clinic and went into see the physio people, they're happy with Lewis in that sense and said he's came on leaps since they last seen him before he was discharged from hospital, gave us some wee things to do with Lewis so he still gets to work the muscles in his mouth/face as he's refusing his oral feeds and we're getting referred to speech therapist near home to work on the feeds, but to be honest there's only 1 thing that needs to happen to get Lewis feeding again and that's to come off the yukky smelling and tasting high calorie milk but they won't do that,
next stop was into see the doctor, apparently Lewis is only just scraping by with weight gain and he was concerned at the amount of feeds in a day Lewis was bringing back up and the xray showed his right lung looks whiter than the left, he says that could be the reflux coming back on his lungs though sooooooo he wants Lewis admitted to the hospital for a couple of days to run tests on the reflux, to determine how bad it is etc and to see if the operation would benefit him, though he's not keen to do the operation, he would rather just wait it out and see if it gets any better as Lewis gets bigger and starts on solids etc but like he said, bringing back 5/6 out of 6 feeds in a day is not good.
he says we'll be looking at the beginning of March to be going in, great, last place i want to be over Nathan's 2nd birthday, we have plans for his birthday as well, will just have to wait and see what dates they send us out for it and go from there, just worried about his 'good' lung looking whiter than the 'bad' lung.

He really is just a wee treasure though, he's so precious to us after everything he went through to be here and moreso after Nathan etc,
i'll add some pics xx

Hayley + Sunshine Warrior, Lewis xx

Refusing feeds

well, seems like Lewis doesn't like the infatrini milk, the hospital put him on it for extra calories but he hates it, has refused EVERY oral feed, but then in my opinion it's more important for him to get the extra calories and put on the weight rather than being able to suck from a bottle, will be trying him with more solids soon but he doesn't seem to like the spoon in his mouth, though he quite likes the taste of baby rice and rusks
his reflux is pretty bad too poor wee thing, so i now have a nice big stock up on washing powder to keep up with all the washing of things he's covered in 'brought back up milk'

nothing else to update on really, have an appointment on the 19th at the diaphragm clinic and an appointment with the surgical paediatrician on the same day though i have no idea what that one is for, but hopefully will be nothing to report from those appointments because hopefully everything will be ok.

update

this will be quick, hard findin the time now but certainly not complainin, bein a 'proper' mummy is just the best thing in the world n Lewis certainly lives up to his nickname and is just a little ray of sunshine, he's just so content and smiley.

we both still have the cold though its very mild now and Lewis still has a wee cough, coughin up mucous, so it's makin him vomit quite a bit, horrible mucousy vomit, and this has put him off his feeds a bit so has gone back to a best of 30 mils orally,

we had an appointment back at the ward clinic today and seems Lewis hasn't put any weight on since last appointment 2 weeks ago, well he has it was only 1 ounce tho, he's 10lb 6oz today and was 10lb 5oz a fortnight ago, so they've changed his milk to infantrini? with more calories in it, great another thing can only get on prescription, for the doctors to mess up, he's been home 3 weeks now and we still arent totally sorted with everythin ugh
they sorted him out today for an RSV injection, was either hang round another hour odd and get it today or go back on wednesday so we just waited round, wanted it sooner rather than later, so he's to go back in 3 weeks for the next 1 n then another 2 weeks after that which he might miss because they stop doin them in march sometime.

on a brighter note Lewis is givin out kisses, it started with me smackin my lips at him sayin give mummy kisses, then he started smackin his lips back at me n holdin his mouth open for kisses, sometimes he's a wee tease though will do it and keep his mouth open till i get near then closes it n turns away laughin, it's just so cute and seems he saves them all for me, no1 else will get any not even Ricky, total mummys boy is Lewis.

nothin really much else to report on so i'l just leave some pics :)

check out his 'sunshine' tshirt :)