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.

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.

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.

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.

Trinity-Storm and her 2 year old nephew Shaquille