highs and lows

well last wednesday (1st) Lewis was back at yorkhill for his post op check supposedly with his consultant, who we seen for like 2 minutes!!! no1 is concerned that Lewis STILL has the runs, which he's had since his operation, his consultant took 1 look at him said oh he looks great, we'll schedule him to come back to the diaphragm clinic in November!!!
So i'm not happy but what can i do, he's been the diaphragm clininc only once already which was in february, the month after he was discharged from NICU and we haven't seen his lungs or had his chest listened to or his diaphragm checked out since, not impressed.
Oh and he passed his hearing screening today, i knew he would though :)

He's still not eating either, in fact i think the situation is getting worse, he only has to touch some foods and he's gagging and retching at them nevermind if it actually touches his lips, this is so frustrating, he's just not interested in food, he WILL put anything in his mouth as long as it's not food. I'm just at a loss with this now, i have no idea what to do or try next and SALT is no use either, so what now?

Lewis has been gaining weight recently, yesterday was the latest weigh in, he has put on 5oz in one week, how fab, that's the most weight he's ever gained in a week, sometimes didn't even gain that in a month, but can feel the difference in him now he feels so heavy and solid, though he still isn't on par with his height and age but he's doing fab, apart from the past week or so his mucousy choking episodes are back though he's not refluxing so we're not concerned about the nissen, but again no1 seems concerned sooooo........

Can't believe Lewis will be 1 in two months time, that's so scary, where has the past year gone and look how far he's came :)