January 2012

Well it's been a few months since I've posted in the blog so I thought I better do a quick update.

Trinity-Storm turned 3 in November, she had a great week celebrating her birthday. She learnt to walk properly about 1 month before her birthday and is now running around the house. She is talking a lot more and copying a lot of words and can even sing! She knows how to work the remote for the t.v and can change it to her channels and rewinds what bits she wants to watch over and over again.

Food wise she is still pretty much the same, just snacks on food, she loves her ready salted chippies and knows where to find them in the pantry. She is still feed via nasal gastric tube over night. Sometimes we take out the tube and let her have a few days rest from it. She hates having it put back in, but if we left it out she would waste away and starve.

Trinz still sleeps in a cot with her apnoea monitor, it has gone off once last year when she decided to hold her breath. She had 1 episode last year and needed hospitalisation and oxygen, but other wise she hasn't been too bad. She has had a few doses of steroids which have kept her out of hospital.

Trinity-Storm still can't do a lot outside of our home and is pretty much housebound. We sometimes go to parks with her, but the weather has to be good with no wind. The wind is what makes her airways play up and she gets sick. She does come out shopping etc though because we aren't inside. She loves going out and cries when we come home.

Trinz had a pretty good Christmas and was very spoilt. She loved opening the presents this year but wasn't really interested in what was inside them. We went to my mums this time for xmas instead of staying at home.

Trinz's hearing is ok and she just has to have follow up appointments now, her eye tests are coming up in a few weeks, we will see what they say about her needing glasses.

Developmentally she is about 6 months behind with some things and with others she is around 1 year behind. She may not get to go to school but we are hoping she will, I don't think she will when she turns 5 though.

I will update the blog after her eye appointments to let you all know how it goes.