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Life With a Blind Baby (Page 1)

Dylan has just been diagnosed as clinically blind.

There is little doubt it is as a result of the .I.V.H. I cannot stop crying, not just for me but for him - for all the beautiful things he will never see, I have been told it is natural after a shock like this to think of the negatives but it's so unlike me. The first thing I thought of was that he would never see my face, see the pictures of him when he was so tiny, see a sunset - the ocean. See life. But I guess that blindness now isn't what it used to be - we are a lot more equipped for it now aren't we?

I love his even more for it I think, it makes him even more of a trooper. I thought I would let you know as I have done with all of dil's other developments - the good and the bad. I have to stay strong for him.
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replied March 4th, 2006
Supporter
Oh, i'm sorry to hear this for dil! I believe god has a plan for each and everyone of us, we take it in stride. "what doesn't kill us, can only make us stronger"..... It's absolutely true :wink:

he's a strong little boy who will overcome a lot....... You just wait! You'll look back in 20 years in amazement :)

jordan had autistic tendencies. I just always keep in mind that it could always be worse.

If you ever need to talk.. Pm me!
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replied March 4th, 2006
Community Volunteer
Have you ever heard of helen keller?
There is quite a bit if you google her name.

I know this isn't where you will be thinking right now but maybe remember this for the future when things aren't so intense.

Beauty comes from within not from the outside, so i'm sure he will know the truth of his mothers beauty for himself.

Support is key, yes it'll be hard but the more you understand his degree of blindeness the easier you (and he) will find it to cope, simple things such as not moving the furniture around

yes, you're very true blindeness isn't the darkness it once was. My partner is technically blind without lenses/glasses, in his case due to extreme short-sighted ness. Do you know yet what kind of blindeness your son has been diagnosed with? Is it focal control blindeness or is it damage to the optical nerve? Fault with the retina?
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replied March 4th, 2006
Extremely eHealthy
Aww :/ so sorry carrie. Hope there is something the docs can do to help that.
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replied March 4th, 2006
Active User, very eHealthy
I'm sorry carrie...That's awful to have to deal with right now on top of everything else. But your right blindness is not what is used to be. Dil can still have a very fulfilling life. If you need to talk let me know. Sorry I was away on msn earlier (time difference).
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replied March 4th, 2006
Experienced User
I dont know what kind yet as he is too young and unstable for more tests - I will let you guys know as soon as we do... They think it will be irreversible as it is most likely to do with the brain bleed he had (damage to the area of the brain that controls sight) not to do with other more common and reversible defects such as a detached retina.
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replied March 4th, 2006
Especially eHealthy
Carrie im sorry they said dil has blindness. Thats so sad I wanted to cry 2 (but im sure if I did my hubby would think I was nuts) maybe when dils bigger medicine will have figured a way to treat his condition and make it better. Who knows but I will pray that they were just flat out wrong. Stay strong sweetie!
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replied March 4th, 2006
Experienced User
Thanks dani, your post made me cry, it helps so much to know I have such great people around me sending out thoughts and prayers for my little boy.

I was just at the hospital for literally ten minutes to go and express some more milk and I went to touch dil and it startled him - his limbs jerked outwards as babie's limbs do when they are shocked by a sound or movement and it made me think about a lot. Funny how simple reactions make you think - and now I do think about it I realise he has been like that since the bleed, I just wasn't aware of it. I didn't want to be aware of it because that would be admitting something was wrong.

I dunno, it's so hard but there are so many people who are worse off than me.
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replied March 4th, 2006
Especially eHealthy
Im glad u are pumping milk for him thats gunna help him alot. Go have some ice cream or something and relax u deserve it!
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replied March 4th, 2006
Experienced User
I just wanted to say i'm sorry. I wish there was something I could say that could take away some of the pain but I know there isn't.

Just remember that there's so much to life aside from what you see. He may not see your face but he will feel your unconditional love and support through his life. And you don't need to see a sunset to enjoy just sitting somewhere with someone you love and imagining it in your mind. There's so much he can still experience with you and on his own and as hard as it is now...I can tell you that when he's 3 or 4 you won't even notice it anymore cuz he'll be such a spunky lil guy and full of personality. :d
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replied March 4th, 2006
Experienced User
Thanks guys, dani the ice-cream really helped... My aol is borken at the moment and I really wish it weren't as I could do with a chat and a laugh- i'll try and fix it.
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replied March 4th, 2006
Especially eHealthy
Good I was wonderin y u werent on earlier. What kinda ice cream did ya eat?
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replied March 4th, 2006
Active User, very eHealthy
Omg
Carrie, ur post is so sad made me cry *sniff sniff*. Aww I really hope the docs can fix his condition. G luck to u and little dil, hopefully everything will be ok.
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replied March 4th, 2006
Active User, very eHealthy
You know the procedure for having blind kids, right? Y'know, not moving furniture unexpectedly (if at all) and stuff? He'll be fine. Blindness won't stop him doing anything. (except surgery. :wink: )
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replied March 5th, 2006
Experienced User
Me and matt have looked into stuff about life with blind kids yeah, and the first thing they say is not to move the furniture as much as possible when they are mobile. If anyone knows of any good sites for parenting blind kids (not that many of you will :) - ) I googled it but there are so many and they nearly always say the same thing or are statistics.

I was looking into stuff though about older kids and teenagers and there are even programmes that will allow him to use computers and games etc, if we have that now - then what's technology gonna be like in a few years. What do you think of braille? Is it worth teaching him, I dunno - parents of blind kids have mixed feelings about it so I thought i'd ask you guys. Me and matt decided it was time to be proactive and look out for dil not think of ourselves as we have been doing.
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replied March 5th, 2006
Experienced User
Lol dani, I had white chocolate ice cream and mango sorbet :) (it was what we had in the freezer and it was well recieved.
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replied March 5th, 2006
I did a search for you on some stuff...You have prob seen most of it if you've been looking..But hey, if you havent then here you go!


Http://www.Blindchildren.Org/textonly/to_e du_dev/3_5_4.Html

http://www.Hesperian.Org/buy_books.Htm#bli nd
8th book down. Might help?


Http://www.Nfb.Org/fr/fr14/fr04se05.Htm

http://www.Forestbooks.Com/system/index.Ht ml

http://www.Ncbi.Nlm.Nih.Gov/entrez/query.F cgi?Cmd=retrieve&db=pubmed&list_ui ds=1386004&dopt=abstract

for the future possibly? Or something similar. Its mostly for disabled children but blind too I think.
Http://www.Lovingpaws.Com/
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replied March 5th, 2006
Experienced User
Thank you so much lacey - yes i've seen most of those sites but there were a couple there that are really useful which I didn't see. Thanks :)
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replied March 6th, 2006
Experienced User
Wow - well dil had a good day today, he got upgraded again and he can definitely hear... :) he is also still breathing on his own despite the doctors thinking he would be a bit shaky at first. The more I think about his blindness the more it doesn't bother me strangely - I just feel lucky to have such a strong little boy who has come through so much.

As dil is doing so well, they are going to let me spend tomorrow night with him and my boyfriend in one of the hospital rooms so that we can have some "down time" and get used to being with our baby. He will still have moniters and a panic button on the wall but it will be nice to be with him for the .W.H.O.L.E. Night without having to go home when visiting hours end. We got shown around the room today, it has a double bed and a moses basket, a chest of drawers and a tv with an en-suite bathroom. It's fairly nice actually. It will still be like another 5 weeks before he can come home due to hospital protocol but the docs said that he's so strong atm that they don't see why we shouldn't have these occasional nights alone with him.

I want it to be tomorrow already :)
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replied March 6th, 2006
Extremely eHealthy
Aw thats great news, hes getting stronger everyday!
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