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
Monday, August 23, 2010
August Update
Wow what a month this has been. Trinity-Storm continues to amaze us every single day. She is now crawling and almost sitting. She is moving a lot faster and is on the go all the time. But the biggest most amazing thing has happened last Friday the 20th of August. She has come off oxygen!! We had an appointment with her paediatrician and he said we should try her off and see how she goes. So we stayed up there for a couple of hours and low and behold she was absolutely fine. Her oxygen saturations didn't drop below 93 and she even had a sleep while we were there and she remained the same. All of her medications have also been stopped, which is really weird because I'm so used to giving meds at certain times of the day.
For the first night at home without oxygen we thought we would put it on while she was asleep but the second night we tried her without it and she was fine. We have an apnoea sleep mat in her bed and it never alarmed once. So she has had 2 nights off oxygen and goes all day without it. It is amazing but kind of weird at the same time because she has never ever been without it. It's so different going in the car, you only have to carry her, no extra tanks or tubing, it is so much easier.
Her only major issue now is feeding. She still has breathing issues of course and that will never go away, she has had about 3 bouts of bad asthma over the last couple of months and has had steroids, inhalers and nebuliser each time. But no hospital visits.
The speech language therapist is coming twice a week now and is working at desensitising her face and mouth. Trinity-Storm doesn't mind putting mouth swabs in her mouth with water on them, but doesn't like other tastes on them. She has managed to put a gum brush in her mouth a couple of times but refuses to have a spoon anywhere near her. When she was with nana she had a lick of some marmite toast and some dorito chips, she always likes to lick the chips. She has licked some butter off toast and some egg but that is about all she has had food wise.
So we are still trudging on with her feeding pump which she is only having nutrini. It seems to be working great though because she is now weighing 8.6kg and is 76cm long. She has finally reached the 3rd percentile on the growth chart which means she has finally caught up in her growing. The doc reckons she will grow to about 4'11". But at the end of the day it doesn't really matter to me how tall or short she is.
The paediatrician wants to try and pull her nj tube up to a ng tube and see how she tolerates tummy feeds. He said her tummy has probably shrunk because of the lack of food or anything going into it, so it needs to learn to have food again. But the last few times she has been fed with a ng tube she hasn't coped so well. She ended up in hospital and was vomiting all the time and nothing was getting absorbed. So I think it is going to be a very long process, but the good thing is they haven't spoken about any operations lately so we may not have to have the gastrostomy after all.
So we will take each day that it comes and continue to be amazed by this amazing little girl who has proved that she is a fighter and will overcome anything thrown at her.
For the first night at home without oxygen we thought we would put it on while she was asleep but the second night we tried her without it and she was fine. We have an apnoea sleep mat in her bed and it never alarmed once. So she has had 2 nights off oxygen and goes all day without it. It is amazing but kind of weird at the same time because she has never ever been without it. It's so different going in the car, you only have to carry her, no extra tanks or tubing, it is so much easier.
Her only major issue now is feeding. She still has breathing issues of course and that will never go away, she has had about 3 bouts of bad asthma over the last couple of months and has had steroids, inhalers and nebuliser each time. But no hospital visits.
The speech language therapist is coming twice a week now and is working at desensitising her face and mouth. Trinity-Storm doesn't mind putting mouth swabs in her mouth with water on them, but doesn't like other tastes on them. She has managed to put a gum brush in her mouth a couple of times but refuses to have a spoon anywhere near her. When she was with nana she had a lick of some marmite toast and some dorito chips, she always likes to lick the chips. She has licked some butter off toast and some egg but that is about all she has had food wise.
So we are still trudging on with her feeding pump which she is only having nutrini. It seems to be working great though because she is now weighing 8.6kg and is 76cm long. She has finally reached the 3rd percentile on the growth chart which means she has finally caught up in her growing. The doc reckons she will grow to about 4'11". But at the end of the day it doesn't really matter to me how tall or short she is.
The paediatrician wants to try and pull her nj tube up to a ng tube and see how she tolerates tummy feeds. He said her tummy has probably shrunk because of the lack of food or anything going into it, so it needs to learn to have food again. But the last few times she has been fed with a ng tube she hasn't coped so well. She ended up in hospital and was vomiting all the time and nothing was getting absorbed. So I think it is going to be a very long process, but the good thing is they haven't spoken about any operations lately so we may not have to have the gastrostomy after all.
So we will take each day that it comes and continue to be amazed by this amazing little girl who has proved that she is a fighter and will overcome anything thrown at her.
Friday, June 25, 2010
June update
Well it's been months since I last posted. Trinity-Storm has been keeping exceptionally well considering we are in winter. She has had a few ear infections and the odd cold, but that's probably the worst of it. We did go to hospital once with bronchiolitis but it wasn't very bad at all.
We went back to Starship in May for a check up. When we went up they were thinking she wouldn't have improved and they would need to change her pressures and settings on her CPAP machine. The first night there they monitored her sleep without her CPAP and then in the morning decided she didn't need CPAP anymore. Her CO2 levels were too high so they also decreased her oxygen levels right down to 0.125 and she has managed to maintain that level ever since. The docs also think that possibly within 1 year she could be off oxygen altogether. They think she has done remarkably well and has grown so much which has helped her lungs significantly. It's good for us to have a time that we can aim for, we have never ever been told she would ever come off oxygen so it's fantastic news.
Our major problem right now is getting her to eat again. We had an appointment with her surgeon, Professor Pringle earlier this week. He is so funny he said he is going to be an ostrich and bury his head in the sand. He doesn't want to do anything else to her and make unnecessary holes in her if he doesn't have to. But she can't have a feeding tube forever, they aren't long term solutions so we have to look at other options. Well there is only 2 options, 1. get her to eat orally and drink bottles (she can't drink bottles, the fluid goes down the wrong way) 2. have an operation. He will need to do a fundoplication and a gastrostomy. Basically that means he will band off the little bit in her tummy which will stop the reflux and then make a little opening that goes from her outside straight to her tummy. So she will get fed through a little port opening rather than down her nose. Her dad is dead against this and can't see the logic in it, but I can. We see Mr P again in late November and by then he would've spoken to her paediatrician about how long to leave her with the feeding tube before they decide it's too long. She will be 2 in November and I can't see her eating anytime before then.
The other thing Mr P mentioned was about her vomiting, obviously she isn't absorbing anything that's in her stomach. There isn't any food going in there but her saliva she produces during the day is but it isn't getting absorbed. That has always been 1 of her major problems. Whenever she did eat it would come straight back up. So there may be something else he has to do at the same time as the other op to try and sort that out.
I'm not sure when he wants to do the op, thank goodness he can do it in Wellington though and we won't have to go to Auckland. But he could possibly do the op in December or early next year. I think he wants to put it off for as long as possible because it will be trickier than a normal gastrostomy, she has already had surgery around that area and the adhesions may cause a problem.
But whatever he decides to do we trust him with her life. He is a fantastic surgeon. I'm not in a rush for it to be done but it would be nice to get it over and done with early next year. But in the mean time I will be trying everything I can to get her to eat.
Wednesday, March 31, 2010
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.
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.
Sunday, January 17, 2010
Happy 2010 everybody!!
Happy New Year to everybody. I can't believe it's been just over 1 year since my girl was born. What a horrendous year it has been. We have had some ups but it has mostly been downs. Here's hoping we have a better year.
Anyway my girl's results from her video swallow came back. Basically she is not allowed to drink any kind of liquids orally, so a bottle is out of the question, but she is allowed thicker things like puree food, trouble is trying to get her to eat them though. Any time you try and put some food in her mouth she gags on it and rolls her tongue, but she is quite happy to hold a spoon and put that in her mouth herself. So we are trying to give her longer toys like a tooth brush or a spoon to play with. This should get her mouth moving a different way and should strengthen her muscles. She should start saying different words and hopefully trying to eat. We really don't want her to have a mickey button put in and be fed through her stomach. She has already had enough issues with her bowel and stomach so that isn't really an option at the moment.
Her sleeping at night with the CPAP machine is going great. She is so used to it now. She knows that when she is in bed and her mask is on it's time to sleep and usually within 5 minutes she will fall asleep. (notice I said usually) sometimes she has a fight with me over it and then tries to tell on me to her daddy! She has 2 teeth and I am pretty sure she is getting some more. She is having restless nights and it's not normal for her. The trouble with her teething is that she doesn't dribble so we don't know if she is or not. She doesn't dribble because she isn't eating any food so she isn't producing the saliva. I don't mind the not dribbling though.
She is slowly putting on weight. At the moment she is 6.4kg. So she is still little but she is getting there. She still can't sit by herself and is not crawling. But she does push herself along the floor on her back and she can roll over. We quite often find her under the coffee table or right by the tv cabinet. Just as well we have a big living room otherwise she would be in the hallway or the kitchen.
Trinz still has quite bad reflux and it is really hard to keep all of her medicines down. We always carry a towel around with us and there is normally 1 on hand for accidents. We haven't taken her out much over the holidays because the weather hasn't always been that good. We did take her down to Aotea Lagoon and we had a bbq but the next day she had a cold, so at the end of the day it isn't really worth her getting sick. My nephew has a birthday today but I stayed home with her and my sister picked up my kids. It was too risky to take her and be around other kids. They may look well but any little sniffle or any little cough is still a very big risk for her. My family understand so it's not a big deal anyway.
New Years Eve was a pretty quiet one. Trinz was awake at midnight so the kids let off some fireworks for her on the driveway and I held her up at the window. We had Adrian and Brenda over here. Antz shared a box of bourbon and coke with his son Nooroa and I think I drunk 2 raspberry KGB's and 2 vodka mudshakes. So a very quiet night. New Years day we went over to Adrian and Brenda's house for a bbq which was nice and then we came home around 10pm. Trinz is really starting to get to know who is who now and she loves Brenda.
Our daughter has also discovered the tv. Our tv is constantly on channel 45 Playhouse Disney Channel! We all know the words to Special Agent Oso, My friends Tigger and Pooh, Imagination Movers, Chloe's Closet, Word World and not to forget her favourite Mickey Mouse Clubhouse. She dances and goes crazy on the floor. She kicks her feet and does the pelvic thrust. I should video her one day and put it on here for you. She gets really angry if you get in her way, she will pull your hair and try and push you out of her way, and if she is sitting on somebody and 1 of the kids get in her way she moves her head sideways to try and see the tv. She will ignore you too if you call out to her.
Sunday, December 27, 2009
Merry Christmas
Wow we made it to Christmas without going into hospital. This time last year we were rushing from house to house and then to the hospital to see our baby on Christmas Day. But this year we got to have christmas at home with her. It was great. Normally we go somewhere else for christmas but this year we stayed at home and my family came over to our house. It was so much better and easier. We had so much food we have only just finished off the leftovers. The dog was really well fed over the last few days. I think she is sick of food now.
On Christmas day our baby decided she would sleep in until about 10am. Everybody had already opened their presents and Nimeesha had already ridden her new bike up and down the driveway about 1 hundred times!! When she finally did wake up to open her presents she was more interested in the paper!!
But all in all it was a great day and so far I think it's been 1 of the best Christmas Day's we have had in a very long long time.
Merry Christmas everybody and bring on the new year!!
On Christmas day our baby decided she would sleep in until about 10am. Everybody had already opened their presents and Nimeesha had already ridden her new bike up and down the driveway about 1 hundred times!! When she finally did wake up to open her presents she was more interested in the paper!!
But all in all it was a great day and so far I think it's been 1 of the best Christmas Day's we have had in a very long long time.
Merry Christmas everybody and bring on the new year!!
Saturday, December 12, 2009
Yay finally some results
Well we finally have found the answers we have been waiting 13 months for. The bronchoscopy revealed that Trinity-Storm has a very narrow trachea and her entry way into her upper right lung is also narrow. What that basically means is that she has to work extra hard to breathe and when she gets sick her airways almost completely close up. So when she had cardiac failure a few months ago that was because her airways were completely blocked. So we have arrived back home and she will be having CPAP (continuous positive airway pressure). This will be on whenever she sleeps longer than 45 minutes and especially at night. The pressure will open up her airways and help her to breathe easier. This is a trial and error thing to see if it improves the narrowness of her airways. They will review in 6 months time to see the difference. If that doesn't work then I'm not sure what they will do. But as she grows her trachea should grow as well. She has just 1 feeding tube now which is still the nasal jejunum tube. She has a video swallow test coming up and we will be able to see if it is safe for her to have a bottle. If it is then hopefully she will drink orally and we can get the tube out altogether. Initially the docs had thought that she was aspirating but on closer inspection it shows that she wasn't! So that is great news for us and her! The reason why she refluxes is because she has to work so hard to breathe. So every time she eats it kinda fills her up faster and she can't handle it so she refluxes. But this will hopefully improve in time. Everything is about time and waiting at the moment. But we have waited 13 months I'm sure we can wait a little bit longer.
Thursday, December 10, 2009
Sunday, December 6, 2009
Back to Starship
Well I haven't had much to update lately. My daughter has been well enough to keep out of hospital but now we are due back at Starship. We are leaving at 6.30am tomorrow, but it's just me, Antz and Trinz going. The 3 younger kids will be at Nana's and the 2 big kids will be at home. I can't imagine the state the house will be in when we return.
We are only going for 3 days this time, if everything goes to plan. She is having a bronchoscopy and CT scan done on Tuesday and has to be ventilated so we are hoping she comes off the ventilator straight away.
On Thursday her feeding tube was blocked so I had to feed her down her nasal gastric tube. On Friday we went to the hospital for a barium swallow test and the staff in the children's ward attempted to unblock her other tube. They tried for a few hours with no success so we had to get it pulled out. There was about 10 - 15cm of blockage. It was dried up hardened milk. They were going to put another 1 in which would take a few more hours to get it in and xray it etc, so we just said to leave it because the staff at starship can do it on Monday.
So at the moment we are hoping that she doesn't aspirate her milk into her lungs. So far she seems okay and we will see what happens in Auckland.
I will try and keep this updated while I'm at Starship to let you all know how she gets on.
We are only going for 3 days this time, if everything goes to plan. She is having a bronchoscopy and CT scan done on Tuesday and has to be ventilated so we are hoping she comes off the ventilator straight away.
On Thursday her feeding tube was blocked so I had to feed her down her nasal gastric tube. On Friday we went to the hospital for a barium swallow test and the staff in the children's ward attempted to unblock her other tube. They tried for a few hours with no success so we had to get it pulled out. There was about 10 - 15cm of blockage. It was dried up hardened milk. They were going to put another 1 in which would take a few more hours to get it in and xray it etc, so we just said to leave it because the staff at starship can do it on Monday.
So at the moment we are hoping that she doesn't aspirate her milk into her lungs. So far she seems okay and we will see what happens in Auckland.
I will try and keep this updated while I'm at Starship to let you all know how she gets on.
Saturday, November 21, 2009
Thursday, November 5, 2009
She finally made it
Wow what a year! My baby has finally turned 1. What a rocky road we have had to get this far. I never even imagined 1 year ago that we would've even made it to her 1st birthday. It's been such a journey for everybody involved in her life, but especially my family. My kids have been through so much with their little sister and they understand so much more than what we think. Right from the start they have been there, they have cried at times because it used to upset them. When I showed Nimeesha (my 5 year old) the little video I had made she started crying. She said it was just so sad. Their sister means the world to them and if anything happened they would be so devastated.
Her birthday was a good one. We didn't have everybody there we would have liked to. A lot of the family had flus and chicken pox so it was just the people that weren't unwell. She managed to stay awake through most of her birthday and conked out towards the end. I think she was wondering why there was so many people looking at her but they weren't dressed in blue scrubs or had doctors coats and stethoscopes.
Antz was great and he thanked everybody for all the help and support they've given us and he thanked our kids (and made them cry!). The kids have probably been through the most this year. Getting shoved around from person to person, getting dragged up to Auckland, not seeing me or their sister for sometimes weeks.
I want to thank all of the people that have helped us out this year and haven't judged us as parents, because we couldn't have been able to do what we needed to, to be with Trinity-Storm without the help of others.
She is still a very fragile baby and will probably be like this for the next few years, so please bear with us if we ever turn you away or turn down family events. It was so hard going to starship and watching her fight for her life, she fights for her life everyday, but that was especially hard when we were so close to the heavens gates. All of the praying and thoughts that everybody sent her definitely worked, and the fact that she is a fighter and will never ever give up.
I LOVE YOU MY DAUGHTER AND SO DOES DADDY, WE WILL NEVER GIVE UP ON YOU AS LONG AS YOU NEVER GIVE UP XOXOXOXOXOXOXOXOXOXOXOXOXO
Her birthday was a good one. We didn't have everybody there we would have liked to. A lot of the family had flus and chicken pox so it was just the people that weren't unwell. She managed to stay awake through most of her birthday and conked out towards the end. I think she was wondering why there was so many people looking at her but they weren't dressed in blue scrubs or had doctors coats and stethoscopes.
Antz was great and he thanked everybody for all the help and support they've given us and he thanked our kids (and made them cry!). The kids have probably been through the most this year. Getting shoved around from person to person, getting dragged up to Auckland, not seeing me or their sister for sometimes weeks.
I want to thank all of the people that have helped us out this year and haven't judged us as parents, because we couldn't have been able to do what we needed to, to be with Trinity-Storm without the help of others.
She is still a very fragile baby and will probably be like this for the next few years, so please bear with us if we ever turn you away or turn down family events. It was so hard going to starship and watching her fight for her life, she fights for her life everyday, but that was especially hard when we were so close to the heavens gates. All of the praying and thoughts that everybody sent her definitely worked, and the fact that she is a fighter and will never ever give up.
I LOVE YOU MY DAUGHTER AND SO DOES DADDY, WE WILL NEVER GIVE UP ON YOU AS LONG AS YOU NEVER GIVE UP XOXOXOXOXOXOXOXOXOXOXOXOXO
Monday, November 2, 2009
Subscribe to:
Posts (Atom)