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  1. #811
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    Quote Originally Posted by monnie24 View Post
    Staying in for now I said I wasnt ready to go home. Hes off all ventilating etc hes drinking 75mls but the part of vrain goes to your legs and muscles to arms is damaged. He was realistic doesnt think it will heal just because he is newborn.

    We have a lot to think about.

    Sent from my GT-I9195T using The Bub Hub mobile app
    Monnie the brain is such uncharted territory- even for experts. Many people have stories of being told their child would be terribly damaged and many have gone on the recover astonishingly.
    That said- disability doesn't necessarily mean a terrible life either- I'm sure you know full well that many people with disabilities lead full and happy lives. I guess what I'm saying us that the outcome is uncertain- so hold on to hope.
    Sending you big hugs xxx

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  3. #812
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    I guess also they can't make any promises about recovery because what if they're wrong? It's easier to accept if a doctor is wrong and something good happens than vice versa. Good luck with whatever you do. We're all still here for you xx

  4. #813
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    Thanks Atropos my brother has downs (not maternal). I know how well a disabled person can live a life. I think they are thinking it's going to get worse. Right now im looking forward to heart felt take some gorgeous pics tomorrow! Because he is beautiful.

    Im so stressed. Im not sleeping now. Thinking F our house isnt friendly for wheel chair, walking frame or anything like that. I dont drive so bus is at least hour. How would I make his appointments? Hubby needs.to work obviously!!!! Im trying to explain this to him. We are having a debrief to family tonight.

    I just cant comprehend how I took my healthy baby home and then this :'( I know im not the only mum either. Its tolling on mine and hubs relo im so bad at communication. So we have family counselling on the 1st. That is all I need a divorce as well.

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  6. #814
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    Did you end up starting a blog Monnie? I'm sure the counseling will help you and your husband. Hugo is lucky to have you and don't worry about not being ready to go home. I wouldn't be either. You've been through so much in such a short time.

    Sent from my telecommunications device.

  7. #815
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    Quote Originally Posted by tadpoles View Post
    Did you end up starting a blog Monnie? I'm sure the counseling will help you and your husband. Hugo is lucky to have you and don't worry about not being ready to go home. I wouldn't be either. You've been through so much in such a short time.

    Sent from my telecommunications device.
    Ive been taking notes a friend opened a thing for me lol site? I hate the ipad so will do it all when at home on pc!

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    Quote Originally Posted by monnie24 View Post
    Thanks Atropos my brother has downs (not maternal). I know how well a disabled person can live a life. I think they are thinking it's going to get worse. Right now im looking forward to heart felt take some gorgeous pics tomorrow! Because he is beautiful.

    Im so stressed. Im not sleeping now. Thinking F our house isnt friendly for wheel chair, walking frame or anything like that. I dont drive so bus is at least hour. How would I make his appointments? Hubby needs.to work obviously!!!! Im trying to explain this to him. We are having a debrief to family tonight.

    I just cant comprehend how I took my healthy baby home and then this :'( I know im not the only mum either. Its tolling on mine and hubs relo im so bad at communication. So we have family counselling on the 1st. That is all I need a divorce as well.

    Sent from my GT-I9195T using The Bub Hub mobile app
    So many things must be overwhelming for you right now but please know that the practicalities such as transport, wheelchair access etc etc can be tackled a step at a time if/when the need arises. There IS help! The main thing is that you focus on Hugo himself and try not to get ahead of yourself with worries. You have SO much on your plate already in this very moment. I know this is easy to say and hard to do, but the future will unfold and there is always a way! Look after yourself, your family and that little guy who is trying so hard. A step at a time. I hope you feel the strength of bub hubbers behind you and supporting you. xo

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  10. #817
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    Quote Originally Posted by monnie24 View Post
    I dont drive so bus is at least hour. How would I make his appointments? Hubby needs.to work obviously!!!! Im trying to explain this to him. We are having a debrief to family tonight.
    Do you choose not to drive for personal reasons or simply don't have a license? If it's the latter perhaps once the initial stress of everything has passed it might be time to looking into learning to drive especially with two young children.

  11. #818
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    Quote Originally Posted by wannawannabe View Post
    Do you choose not to drive for personal reasons or simply don't have a license? If it's the latter perhaps once the initial stress of everything has passed it might be time to looking into learning to drive especially with two young children.
    I think the op has epilepsy? Sorry if I have you confused with another member Monnie.

    You have so much going on lovely, dont stress about organising everything until it comes to that. There are organisations that can and will help get your house to where it needs to be. In the mean time counselling sounds like a really good idea in working everything out. For now concentrate on that brave little boy you have there and make sure you take care of yourself too xo
    Last edited by Purple Lily; 23-03-2014 at 18:28.

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  13. #819
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    Yes I have epilepsy you got it correct (I got my tubes tied for this reason!)

    We are already looking at renting our house out now and renting closer to hosp so its easier for me as bus is such a hike!! Mil was like its not that bad ummm getting two under one ready quick is so hard lol.

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    Gosh Monnie that would be so hard to hear. I'm really sorry to see this happening to Hugo, you and your family. I hope things don't turn out the worst case scenario.
    There is lots of help and support you can access. Counseling is definitely a good place to start.
    Lots of healing vibes to Hugo ((hugs))


 

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