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  #1  
July 8th, 2008, 01:30 AM
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Join Date: Feb 2008
Posts: 55
my zachariah is still undiagnosed, and if im honest im having a really hard time of it all lately, i just feel so unhappy not knowing whats going on. we've had the results of the mri scan and its come back normal which is great but the drs have said themselves theyre pretty stumped as to what is wrong now. we are now being booked in for an erg in 2 months time! (they think it will come back normal) and an appointment with a neurologist is being planned. i asked them whether dvm is now out the window as there's no progress and we're into 7mth now,theyve said that it's not ,and that there's no cut off time either, so God knows how long we'll be playing this waiting game. i just dont know what to do, i know i shouldnt give up hope as they've not told me to but at the same time i feel i have to deal with this someway and at the moment the only way is as if i have a blind son as how can i prepare a future for a seeing child if i dont know when/if that will be! sorry im babbling...

hope everything is going well with all of you and your little ones .
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  #2  
July 8th, 2008, 01:41 AM
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It's so hard isn't it, I completely know what you mean. It's the hardest thing not knowing, you don't know what to think or how you should be feeling and the future seems so uncertain but you have to try and ride it out.

I'm sure they'll get to the bottom of it and it's great news that the MRI came back normal, Fingers crossed for DVM I suppose, in the meanwhile we're all here to support you in any way we can good luck hun
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  #3  
July 8th, 2008, 11:28 AM
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Join Date: Feb 2008
Posts: 55


thank you, i think that is a lot to do with it, not knowing and the uncertainty of his future, like i'll see games or think of things we can do together and then wonder whether in actual fact they'd be useless for him. i know that if he is blind its not like he wont be able to do everything, but i do wonder about how much enjoyment he'd get out of certain things if he doesn't get the visual with it. Are disney films going to be just as good with only sound, what will i do about schools, if we had more children who could see would it cause him distress at times, my list of questions and fears is endless i think! you just want to do right by your children and its so hard when you're in the world of the unknown and dont know exactly what youre up against too.
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  #4  
July 8th, 2008, 11:43 AM
fiefer87's Avatar Mega Super Mommy
Join Date: Aug 2007
Location: Near Buffalo, NY
Posts: 4,336
Hey sweetie, I am sorry you still don't have any answers, but the good news is the MRI looks good. And believe me, I have all the same fears and worries you do, and hopefully I can sort of put some of them to rest.

My dd is 6 and in school now. She is the only visually impaired child in her class and there is only one other child (older she has no contact with) in her school of over 350 kids. It does not bother her in the least. Does she worry about it? No. Since she was born with her visual impairment, she knows no other way. This is normal for her and if she had sight at birth and then lost it, that would be much harder to deal with. Will she get envious as she gets older of kids with sight, probably, but is it really going to matter to her, probably not. She is completely accepted in her class and no one picks on her because of her visual impairment. She walks with a cane and travels very well. My dd still loves her seasame street movies. She gets right up close to the TV and watches them. Kids are amazing. They adapt so well and just learn new ways of doing things.

As for the schools, you contact your special education department, they set him up with everything he needs, adaptive technology, braille, and any services she needs.

Are some of my fears and concerns there, of course, but as she has gotten older, I have seen her adapt, learn to do things on her own, and interact in ways I would have never thought. She just amazes me every day.
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  #5  
July 8th, 2008, 05:44 PM
samylaine's Avatar Super Mommy
Join Date: Jul 2006
Posts: 534
Quote:
Hey sweetie, I am sorry you still don't have any answers, but the good news is the MRI looks good.[/b]


I agree with that! It's hard! Just come here and vent.. I never had to wait for a DX because we pretty much KNEW Nate would wind up with ROP being a micro preemie...
But I know how frustrating all this medical junk is for everyone to deal with!
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  #6  
July 10th, 2008, 02:56 AM
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Join Date: Feb 2008
Posts: 55
thank you, i know the mri is fantastic news but i really want to be in control of this situation but as you and everyone else on here knows we dont seem to have any control over these things whatsoever! anyway i've picked myself up and dusted myself off and i'm ready to face another day again. i think part of the problem is the hope dangled infront of us. i'm really pleased there is hope and at the same time i dont want to spend every day planning for tomorrow and wondering, 'will this be the day he will see!' if that makes sense, i just sort of want to get on with our lives and i know that we can, it's just there will always be (for the time being) that little niggle at the back of my mind if that makes sense! AAAArrrggh!

i've been told that they know the eye looks normal, they know the brain looks normal, now for the erg to see if the bit inbetween is normal (and they think it will be) if it is normal they said they will probably refer me on as they dont have a clue, trust my boy to be one of those rare special cases of 'well this has never happened before!' haha! i think they are openly hoping it will just correct itself, so that makes about 30 of us!

if only our little ones could talk and tell us exactly what they can and cant see. i plough through so many different sites thruogh the week trying to come up with my own reason for 'why' but as of yet i've not struck gold.

i do agree with you though, i have always said though i'd rather my baby was blind than that i had a five yr old that i had to explain to why she could see yesterday and not today, i know children are incredible and cope/adapt with these things far better than any adult, they are all incredibly brave and little starts in my eyes!

thank you everyone, hope youre all doing well yourselves
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  #7  
July 10th, 2008, 12:54 PM
samylaine's Avatar Super Mommy
Join Date: Jul 2006
Posts: 534
Quote:
i do agree with you though, i have always said though i'd rather my baby was blind than that i had a five yr old that i had to explain to why she could see yesterday and not today,[/b]
yeah... that scares me.. as we are told Nate still runs the risk of going blind later on if the ROP causes the blood vessels to start growing abnormally again.. which normally happens around puberty they said...
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  #8  
July 11th, 2008, 03:12 AM
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Join Date: Feb 2008
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oh God im sorry , that must be awful hanging over you like that. do you just try to ignore it or keep the possibility in the open. what does ROP actually stand for? sorry but i cant work out all the abbreviations, although i have a rough idea there just seem to be so many. the waiting is never ending isn't it!

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  #9  
July 16th, 2008, 05:16 AM
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Hi,

I truly understand your worry. I just wanted to share my experience with you. My son Rishi is 18 months old now. He was completely blind till almost 6 months old and after that he would just track some objects placed very close to his face. All the doctors said that it could be DVM . But Theoretically with DVM everything would become normal by the time the child is 12 months old. If things do not happen by then , then its something more permanant and serious.

Well with Rishi even at 12 months he could barely see. But now my son can see almost everything. He can pick small crumbs from the floor. He watches TV...loves mickey mouse. You can call it a miracle but its true. Rishi's eye doctor said that CVI is incurable. But I feel that if your child does not have nystagmus (shaking eye) then he will see all fine one day. Just give him time. For me TV was a great stimulant. I showed Rishi a lot of things with strong contrast like black and white stripes. Lamaze toys are great.

Its all going to be fine. I know it.

Good luck

Yama
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  #10  
July 19th, 2008, 10:24 AM
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Join Date: Feb 2008
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thank you for sharing your story, it is so nice to hear someone with a positive story. i have tried to find people who have been experiencing dvm with their children and have lots of people with vip children but little luck finding anyone with dvm in particular and so thank you. i was just wondering, Was it a very gradual thing for Rishi to begin seeing or did it just sort of happen overnight as i've heard this happens a lot with dvm, a sudden switch turned on? you must have been so happy when you realised he was really seeing i really hope that we are this lucky with Zachariah, he doesnt appear to have nystagmus but they're a little worried about how he tends to tilt his head to one side and look left alot, (sort of like he's thinking!)
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