[blindkid] an update on Joey

Brandy W., with Discovery Toys ballstobooks at gmail.com
Thu Feb 21 15:50:19 UTC 2013


Hi, I know this is a very hard time for your family right now! I know you
want answers, and while that is very understandable it is very important
that you focus on building his blindness skills so he can be a normal 8 year
old boy. If he has the skills he needs to be an independent blind child he
and you will be much happier. I'm assuming you were able to get a case
worker for your states commission, and have hopefully reached the NFB
parents division in your state. If not I'd do those things. I'd also
strongly recommend you look into some blindness camps for blind children for
this summer. The buddy program would be absolutely perfect for your son as
other blind kids doing normal kid things with blindness skills. I haven't
met a kid who came out of that program worse than they went in. They always
come out whole new children. Know we are here with you, and are always
willing to listen and help where we can.

Bran
 

-----Original Message-----
From: blindkid [mailto:blindkid-bounces at nfbnet.org] On Behalf Of *2sday*
Sent: Thursday, February 21, 2013 10:34 AM
To: Blind Kid Mailing List, (for parents of blind children)
Subject: [blindkid] an update on Joey

Hi everyone. A while back I posted an introduction and received quite a few
responses. I just wanted to thank everyone for their words and thoughts and
also apologize for anyone I didn't respond back to. Since October I hate to
say that my son (now 8) has lost all vision. We are still sitting here with
no answers. It's been 8 months since we found out that Joey was legally
blind and that he would eventually loose all vision. Never did I think this
would happen so soon. I'm still searching to find cases like ours and
answers to what this might be. Our Dr. is still sure that's it's LCA but we
will be going to Cleveland Clinic next month for a 2nd opinion. I'm very
anxious to find out what their Dr.s there see. 

Many of you did say that the best thing was to see neurology and genetics.
We have been working with neurology and genetics since Joey started having
seizures. He is now on seizure medicine for a couple months and have been
seizure free since November. Genetics though Cincinnati Childrens have been
amazing. We have done many test but haven't gotten many answers. We are
currently waiting on some more blood test and skin biopsy results which I
hope we will be getting back this week. At this point they are just
searching for anything ... 

I don't know which direction to go. Watching my son go through this
is absolutely heart breaking and the fact that I don't know what is going on
with his kills me. I have requested another MRI and another eye exam seeing
how he's seemed to have lost all vision just over the last month. I just
wish there was someone out there that could tell me what we are dealing
with! I need some kind of answers. 

Thank you to everyone on here that has taken time to read my stories and
taken the time to respond. 


Tuesday Harrison
Mommy to Joey, Carson, Landon, & Summer  <3
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