So sorry for late reply!! Havent been on here for a while and completely forgot tbh. Sorry.
All ok as far as dietician and Registrar concerned. When they weighed her she still weighed the same as when they took tube out 2 months ago. On a 'normal' weight chart in red book Rosie is not looking good at all but when they put her weights etc on the downs chart she looks fine. Going to get her weighed Monday and am hoping she will have put on some weight. Registrar recommended that i only get her weighed every 2/3 weeks so the chart doesn't look so bad. She had a funny turn other night which scared us a bit but all ok now. She has had a little cold (nothing major) and started coughing and i think she must of coughed some phlegm up into her throat and couldn't shift it so she started choking and going blue round lips! .Fortunately we still have the oxygen here so we gave her some and she calmed down. We have to see her heart consultant paediatrician on 30th July and also a hearing check same day so will post on here how it all goes.
Sounds like things are busy for you with appts, great news that the dietician and registrar are happy.
Harry used to have similar coughing/choking episodes when he was smaller, touch-wood it doesn't happen much now (altho he had a funny turn a couple of weeks ago which scared me half to death!). We used to do the same and put the oxygen on for him until he calmed down. He would cough and cough and be struggling to breathe and get panicky and sometimes end up being sick to clear it. At least it puts your mind at rest to know that you have the oxygen there if Rosie needs it. I find sitting in the bathroom with him while running the hot tap into the bath helps because the steam seems to help it clear. He has inhalers too - does Rosie have an inhaler? Hope all goes well with the heart consultant and the hearing test. xxx
No Rosie doesn't have an inhaler and the coughing fits seem to be becoming a bit more frequent now so i might have to mention it to them. Will see how she goes though because it might just be because she has a cold. Will try the 'bathroom' trick though - thanks. Michelle x
P.s does anyone know why my picture has gone really large again???