March Update

Sorry for the length between updates but there isn't really a lot to say. Trinz has been keeping reasonably well and we have still managed to avoid any hospital stays. She has only been checked over a couple of times and has been fine. We have had a fair share of appointments lately though. We have seen the paediatrician, dietitian, neuro develop mentalist, speech language therapist, plunket, paed nurse and the list goes on. She is doing really well at the moment and is not actually too far behind her peers. She is 17 months old tomorrow, she still can't sit up as it is still too hard for her to breathe. Lately she has decided she doesn't want to have her CPAP on at night. This doesn't seem to be affecting her too much, however we are due back to Starship in May and I hope it doesn't have too much of an effect on her treatment and well being.
The rest of the family has been okay, although the last month was a bit hard for Noo and Elaine. It was 1 year since their mum had passed away. The day was really hard for them and we tried to distract them with their little sister Nimeesha's 6th birthday. They don't often talk about her but I know they want to.
We are still keeping sick people away from our house and still don't take her out that much. There have been a few trips to supermarkets and malls with her, but that's with nobody touching her.
She is about 7kg at the moment and is completely off food. She won't even touch it or taste it, so she is still tube fed and it is still the nj tube. This is working okay at the moment and at least she is getting food into her. Although we would like to see it out and her eating properly but I can't see this happening anytime soon as she isn't allowed to have any liquids, as they go down the airway tube.
There are some people out there that are criticising us having this blog for our daughter and questioning how we raise her and what we do in our spare time. All I have to say is "worry about your own lives and stay out of ours" If we go away for a few days by ourselves without our kids, is that any reason to say we are bad parents? Don't you think we deserve a break? Does it really matter that we went to a reggae festival? And an auction that was run to raise money for our daughter had nothing to do with us, Wellington Rugby League organised that all behind our backs and told us about it only a few weeks before because we weren't going to be in town then. So what if they wanted to raise money for her. Do you know how much money it cost to look after a child like her?? NO!! Because you don't have a child like her do you. Do you think it's cheap going to Auckland every 6 months? Do you think we have an endless supply of money?? MMMM must be the magic money tree. And as for all the websites we so called have for our daughter, this is the only 1, and the reason it was set up in the first place was so we didn't have to repeat ourselves to everybody and they could read all about her in their own time. And this is also for her when she gets old enough to read it. So if you don't like it I advise you not to read it. And this isn't exploiting my daughter in any way at all.