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.
