August 2011

Well nothing has been updated since April 2011 and I suppose a lot has changed and a lot hasn't. Trinity-Storm is eating a bit more than what she was but still needs to be tube fed. She is only feeding overnight though with her nutrini milk. The idea is to make her hungrier during the day so she will eat more. She can sometimes manage to eat a snack size packet of rashuns or burger rings, but quite often can't eat a whole packet. She is a snack eater, but I suppose most toddlers are. She is starting to like apples and will try new food. She won't eat any liquid or squishy kind of food, so yoghurts etc are out of the question.
Sometimes in the mornings when she wakes up she coughs quite a lot and will randomly vomit up her milk from the night before. We are supposed to be increasing her milk volume up to 65ml per hour but can't seem to get past 50ml per hour. Her tummy can't tolerate it and she just ends up vomiting.
Trinity-Storm has had her hearing checked finally, and is normal. The grommets have made a huge difference and she is now starting to mimic sounds and say a lot more words.
She is walking with the aid of a frame. She has taken around 10 steps on her own and we try to get her to walk between us. She is getting better at balancing, so hopefully before she is 3 she will walk unaided.
Trinity-Storm loves to read books and loves to do puzzles. She has books and toys all over the house just like any other normal child her age. She is starting to explore and be mischief around the house.
She is still pretty much housebound and has spent a couple of days this winter in Wellington Children's Hospital, she was pretty bad and had to go back on oxygen. She has had a few colds and has had a few doses of steroids and antibiotics. She is very vulnerable to colds, flus and illnesses and we try to limit her going out anywhere to confined places.
She will not be allowed to attend any early childcare facilities so we have enrolled her in the Correspondence School Wellington. We have been accepted and are now waiting for a place to become available.
We have had to go into Wellington Hospital to have a sweat test done to test her for cystic fibrosis. That test didn't work so we have to have another 1 done. Fingers crossed it works and then we can know for sure whether she has this condition or not. If you google cystic fibrosis and look up the symptoms you can almost tick off all of them for her. I am however still not convinced she has this but only the test will tell.