Update from us....

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   Sorry girls, this is a copy and paste from an email I sent to my coffee group girls. So it might not make sense, but gives an idea on how things are going for us.

Hope to see some of you on Friday!!

Just thought I would send an update. Sorry if it's long an boring... I  am bored myself, so it'll probably be much longer than I intend. I am writing in the dark of our room, waiting for Jackson to go to sleep so  I can sneak out and connect to the net somewhere. So far, he's  

resisting sleep strongly tonight!

Jackson's had all the tests now. Everything's come back great. They've decided it's all behavioural (well, we thought that anyway!)  and next week we'll be having sessions with a Speech Language  Therapist and an Occupational Therapist, as well as a child  psychologist. I am thinking we'll probably have to stay here for two  more weeks (the trouble is that when we go home we'll struggle as  there aren't really any teams like this in Wellington). On Thursday and Friday we had sessions with a clinical psychologist that deals in children's eating disorders. She's NZs leading expert in that field,  actually. How amazing to have that help! Anyway, Jackson really liked  her, and on Friday he took yoghurt from a spoon!! AMAZING! And after  the first teeny tiny taste he was taking it with a big wide open mouth - he's never, ever eaten off a spoon like that before. It was only  

40g, but she had some good techniques for getting difficult babies to  try things. It's amazing how much has to be "right" for a kid with feeding aversions to eat. After the yoghurt, he ate a whole slice of cheese. Honestly, I could have throttled him... why do babies always  behave when the right people are watching? So he's been drinking a bit  better, and eating some solids, so everyone probably just thinks I am  some crazy woman who can't handle her kid!! Of course, we couldn't  replicate the success at dinner time, but I think we need to stick to  the yoghurt for a while and not try anything new, so again we can do  some relationship building first.

But, guess what happened on Friday? We got leave from the hospital for  the weekend. It was Matt's last weekend here, so we were looking forward to getting out and about in Auckland, taking Jackson to the zoo and the aquarium and for a picnic. But on Saturday.... we were  

admitted right back into hospital. Jackson started vomiting in his  sleep at 3am on Saturday morning, and vomited on an empty stomach the whole night. He's got bloody Gastro. He's not held anything down  since then, the laundry is absolutely astronomical. I can't imagine  

how I could possibly deal with this outside of hospital. Briony, I  just don't know how you managed with Matthew like this at home. I reckon we've probably gone through about 50 towels. I also now  understand what lethargic is. Jackson has lay in his cot, just staring at us, for two days. He's not wanted to be held or touched. He hasn't  

said more than a few words the whole time, and has barely smiled at  all. Hasn't wanted his favourite toys. Just lies completely still and stares, struggling for breath and vomiting or gagging every few minutes. This is not my baby!! It's heart breaking!!! I have never  seen him so sick, it's quite scary. They wanted to put an NG tube  

down, but I pushed for an IV line instead, and thankfully they agreed.   I really think an NG right now would destroy our progress completely. So, at least he's hydrated, but I am terrified about the inevitable  

weight loss. Jackson already has dropped below 8kg. The xray of his  chest is sickening - ribs with a layer of skin on top. There is no fat  there at all. But, looking for the positive, I am hoping that when he  gets better he'll be absolutely starving and will take quickly to eating again. Gotta keep hoping right?!

It's lonely and depressing being stuck in hospital. It's really tiring  as you're stuck in a little room the whole time, and it's noisy so sleeping is hard. Luckily while Matt was here we could share staying down at Ronald McDonald House, but he's gone home now. I feel pretty  

sorry for myself, but at the end of the day, it makes me realise that  I am grateful that Jackson's not really long term, hard out sick. There is a lot of sadness around here, people who's children are really desperately ill. We're just in the general ward, so I have seen all sorts of things. One of the saddest cases I have seen here is a 13  year old boy, who was severely bullied at boarding school and developed anorexia before anyone figured out what had happened. I have had a couple of chats with his poor mum, she's just beside herself 

with worry. I have also been able to identify with a dad who's baby  has decided to stop eating at 8 months old, for unknown reasons. They're deciding whether or not to give the baby an NG tube. Hopefully I have been able to help him a little with all the worries he has.  We're pretty lucky that all our coffee group babies are so healthy. I  

know Jackson can be healthy too, if we can get past all his aversions.  I'm just getting a little impatient now.

God, I really am sorry that this was such a ramble!! Congrats if you made it this far reading.

Hope everyone is well and happy.