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Why Me? Here is a safe space to let it all out, where you can rant about all the bad things life throws your way. Sometimes it just helps to ask "why me?"

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Claire Offline
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I just don't see the point - January 21st 2009, 10:26 AM

So my son is 5 months old and disabled, as a lot of people already know. He's not putting on weight at all and they want to start feeding him through a tube, but I said no coz if they stay that he will be on a tube till hes at least 5 and will just forget how to eat.

Anyway, I've been feeding him as much as I possibly can and I spend all my days washing and sterilising bottles, cooking and mashing food for him, feeding him and then cleaning up his sick afterwards and then bathing and changing him again (theres A LOT of sick!!!). I always think its worth it coz he'll put on weight. I took him to get him weighed yesterday and he had put on 2oz in just over two weeks! Thats it!!

Im just ready to give up now. I know bringing kids up is always hard, but I'm just slogging my guts out to look after him and he doesn't even change or grow or progress. He's nearly 6 months and he can't even hold his head up. Everyday he screams none stop and I don't see the point in looking after him and feeding him sometimes coz it makes no difference.

I'm not going to give up, he's my baby and I can't. If I don't do these things, no one else will. I just feel so lost and helpless. I know none of you can probably understand, but I'd appreciate the support. I'm on my own here. Thanks x x
   
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Re: I just don't see the point - January 21st 2009, 10:33 AM

I dont know how to help you, Im not a mother myself, but...

Is there someone who can help you...if there is, why dont you just go for a weekend away, just take a break.
The best thing you can do, is be there, which are are doing...but it wouldnt hurt to get away for yourself. Then you can come back all refreshed & in a new frame of mind.


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Re: I just don't see the point - January 21st 2009, 10:34 AM

Hiya
I know it must be hard. Why dont you try negotiating with the doctors about the tube. I know that people are tube fed but can also eat properly. The tube feeding will keep his energy up and give him all the nutrients, but ask if you can also try and encourage feeding normally.

Is your son at physio of any kind? It will be a long slog, but keep trying, do your best, thats all you can do.

I may not understand what your going through personally but I help care for my little brother who is disabled, and have another (younger) relative who is too.

PM me if you EVER need to chat. I'm more than happy to lend an ear/shoulder to cry on.

Laura xx
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Re: I just don't see the point - January 21st 2009, 10:44 AM

Thanks both of you. I've thought about a short break often, but there is no-one to look after Milo. My boyfriend and family have him for a couple of hours but any more and they get too stressed. he takes up every second of your time when he's awake. I wouldn't dare leave him with respite carers either, I'd feel too guilty and jealous. My weekend would be spent worrying, not resting.

Laura, yes I've stopped the doctors putting a tube down twice, but I don't know how much longer I can stop them. The amount of calories he has everyday (he's on calorie suppliments as well as high fat food) means he should be putting on 300g a day, but he's putting on around 7. I wish they would find out WHY he's not absorbing calories instead of looking for a quick fix and shoving a tube down his neck!

He has physio every week but they are useless. They suggested baby massage the first day and that was it. I was like, yes I do that. Then the next week he said "have you noticed Milo likes sitting up?" I said yes I'm his mother of course I've noticed. That is all the advice the physio has given us in nearly 6 months. I've just given up with them now they might have degrees but they don't know sod all

Last edited by Claire; January 21st 2009 at 10:44 AM. Reason: spelling!
   
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i_am_me_again Offline
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Re: I just don't see the point - January 21st 2009, 10:52 AM

I really wish I could help you. But all I can say is stay strong. If I knew you better, maybe I could understand. Dont give up...he needs you...keep with the physio & maybe one day it will start to work again.

Sorry this is all I can say. I believe you can get through it.


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Re: I just don't see the point - January 21st 2009, 10:53 AM

About getting rest, is there a respite centre near where you are?

About being tube fed, the doctors cannot go against your wishes. Maybe explain that they may feed him this way for one or two meals, if you can feed for the others. You have to keep fighting. I know its hard. It took four and a half years for my brother to get diagnosed with DMD. If you get nowhere, change doctors, ask to see their boss. Climb up the ladder of "professionals" until you get somewhere.

As for physio, change people if you can. Have they not got equipment that can support his head while he sits? To build the muscle and eventually make him "learn" as such to do it himself?


xx
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