Tuesday, October 31, 2017
Miss Trinity dancing at School
https://www.youtube.com/watch?v=7vgz2wOfq60https://www.youtube.com/watch?v=7vgz2wOfq60
Friday, August 22, 2014
Saturday, January 21, 2012
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.
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.
Tuesday, August 30, 2011
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.
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.
Monday, April 11, 2011
April 2011
I can't believe I haven't updated the blog since last year, how slack is that?? Oh well better late than never. Trinity-Storm had an awesome 2nd birthday, we had lots of friends and family here that made her day extra special. I made her another special video for people to watch which you can find on the post before this 1.
Trinz has had grommets put in both of her ears, this was done 5 days before christmas. We thought we would have to stay overnight with her but we were home by lunchtime. She coped extremely well and seems to be doing great. Her hearing has improved a great deal since they were put in and she is chatting a lot more and saying a lot more words. She still needs another hearing test done to see if she is partly deaf. We are still waiting for an appointment for that.
She still has her feeding tube, but is eating more on her own. She likes all salty kind of foods and doesn't really eat sweet stuff at all. She has gone off eggs and would rather eat the bacon. She won't eat anything that is slimy or slippery like baked beans or spaghetti. We are hoping by the end of the year we can get rid of the tube altogether.
Trinity-Storm isn't walking yet, but is pulling herself up and walks along the furniture, she sometimes does this only holding on with 1 hand. She is very active and inquisitive so is always on the go.
She is now just over 9kg, but has recently been sick with a cold and asthma so she has probably lost a little bit again. Every time she is sick she loses weight.
Winter is upon us so we are hoping she doesn't get too sick this year. I have to book her in to have her flu injection to avoid any nasty influenza or swine flu.
That's about all that has been going on since last year so until my next update happy reading everybody.
Trinz has had grommets put in both of her ears, this was done 5 days before christmas. We thought we would have to stay overnight with her but we were home by lunchtime. She coped extremely well and seems to be doing great. Her hearing has improved a great deal since they were put in and she is chatting a lot more and saying a lot more words. She still needs another hearing test done to see if she is partly deaf. We are still waiting for an appointment for that.
She still has her feeding tube, but is eating more on her own. She likes all salty kind of foods and doesn't really eat sweet stuff at all. She has gone off eggs and would rather eat the bacon. She won't eat anything that is slimy or slippery like baked beans or spaghetti. We are hoping by the end of the year we can get rid of the tube altogether.
Trinity-Storm isn't walking yet, but is pulling herself up and walks along the furniture, she sometimes does this only holding on with 1 hand. She is very active and inquisitive so is always on the go.
She is now just over 9kg, but has recently been sick with a cold and asthma so she has probably lost a little bit again. Every time she is sick she loses weight.
Winter is upon us so we are hoping she doesn't get too sick this year. I have to book her in to have her flu injection to avoid any nasty influenza or swine flu.
That's about all that has been going on since last year so until my next update happy reading everybody.
Saturday, February 12, 2011
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