Update from us....
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Topic: Update from us....
Posted By: KiwiL
Subject: Update from us....
Date Posted: 04 October 2009 at 10:08pm
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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. |
Replies:
Posted By: KiwiL
Date Posted: 04 October 2009 at 10:12pm
| Sorry the formatting is a bit bung. Tried to fix it but missed bits! |
Posted By: peanut butter
Date Posted: 04 October 2009 at 10:36pm
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HUGS!!! Bloody Murphy's Law that you got gastro then!!!
Fingers crossed he will get back into it. Yoghurt rocks! I dont have a feeding aversion or anything...just a bloody fussy baby and he LOVES his yoghurt...thats the only stuff he will eat happily off a spoon. Magic! Good luck |
Posted By: flakesitchyfeet
Date Posted: 05 October 2009 at 7:23am
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Laurie you are awesome, and incredibly inspiring.
I know I don 't know you all that well on the forums, but I think of wee Jackson lots, and it's so great that now you are at starship you can get the support of leaders in their feild  -------------  http://lilypie.com"> |
Posted By: cuppatea
Date Posted: 05 October 2009 at 7:39am
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Sounds like things are moving forward for you, stink about the gastro bug but at least you were already in the best place for it to happen.
Fingers crossed things keep improving for you. ------------- 
 
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Posted By: IVFGirl1111
Date Posted: 05 October 2009 at 9:37am
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Awww Laurie thinking of you guys! And pleased that you are moving forward.
That is terrible about the bug! But at least it was in hospital. Your such an amazing person and mother Laurie you really are! You are always looking at the positives and trying to help others, you really are an inspiration! HUGE hugs to you xx Ps/ Hows the house going? Any more progress there? ------------- TTC 6 years IVF it is IVF/ICSI round one 10 eggs, 8 mature, 3 fertilised BFN IVF/ICSI #2 = 22 eggs! 20 mature, 15 fertilised, 1 fresh transfer and 2 frosties BFN 2 Frosties still in freezer thank god |
Posted By: susieq
Date Posted: 05 October 2009 at 10:07am
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hugs to you and hope things improve again once he is over this bug ------------- susie |
Posted By: Maya
Date Posted: 05 October 2009 at 10:10am
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Hugs Laurie, sounds like you are coping amazingly well in a really difficult environment. Fingers crossed for a speedy recovery from the gastro and more progress on the eating front.
As an aside, my gremlins were both Fails to Thrive and at 13 mths Mercedes was only 7.6kg, so can relate to the skin and bones  -------------  Maya Grace (28/02/03)
 (02/01/06)
The Gremlins:Sienna Marie & Mercedes Kailah (14/10/06)
Lil miss:Chiara Louise Chloe (09/07/08)
Her ladyship:Rosalia Sophie Anais (18/06/12)
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Posted By: My3Sons
Date Posted: 05 October 2009 at 11:10am
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oh no at the gastro, but glad you are at the hospital where they can keep him hydrated. I hope things improve when he is feeling a bit better, how scary for you to see him like that ------------- Mum to Mr 10, Mr 6 and Mr 4
 
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Big hugs!Posted By: Bobbie
Date Posted: 05 October 2009 at 12:18pm
Grrr gastro! Sod's bloody law that he picked that up in hospital 
I hope things get better soon - sounds like overall you're doing really well. -------------  
 
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Posted By: NikkiB
Date Posted: 05 October 2009 at 12:40pm
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Good to hear you had a little bit of progress before the bl**dy gastro! Hope Jackson is feeling better now.
It is EXTREMELY tiring staying in hospital with your little one. I was a mess after 3 nights, so you are doing extremely well. Try and get some fresh air whenever you can. Good luck ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: tropics
Date Posted: 05 October 2009 at 12:47pm
hugs hun bloooody gastro! Jayden picked it up when he was in hospital too!  glad that there is nothing "long term" wrong with Jackson if you get what I mean, and I hope that he starts eatting again when hes feeling better and sounds like the team up at starship are great and hopefully you get some progress before heading home------------- http://lilypie.com">    [/url]
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Posted By: catisla
Date Posted: 05 October 2009 at 6:17pm
Hugs Laurie - Catriona says to tell Jackson to get well soon so you can come home and they can go swimming again! 
ps. she also says pink wafer biscuits are yummy ------------- |
Posted By: WestiesGirl
Date Posted: 05 October 2009 at 7:41pm
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Laurie you are doing so well! Poor little mite having caught gastro though. Im so pleased that you and Jackson have achieved something. It sounds very positive hun ------------- Our Angel July 08 Gone but not forgotten
And to complete our family, our princess has arrived 
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Posted By: Henna79
Date Posted: 05 October 2009 at 9:20pm
| wow sounds like an awful few days Laurie!! Huge hugs to you, Jackson and Matt. PM me your cell number as I am thinking about coming up and would love to visit you if you guys are still there. |