[blindkid] an update on Joey
Carol Castellano
carol_castellano at verizon.net
Thu Feb 21 15:59:44 UTC 2013
Hi Tuesday,
So sorry your family is going through so much upheaval.
There is something you can do that might begin the process of feeling
like you are at least a little in control of the situation. As you
continue to seek medical information and answers, you can also help
Joey begin to learn the skills and techniques that will enable him to
continue to live a normal life. All the blind kids in our families
and the blind adults on this list use these techniques every day and
manage their lives just fine.
There are inconveniences that come with being blind, such as not
being able to drive--YET--but for the most part, there are tools and
techniques that make just about everything else possible and
doable. Please take a look at www.blindchildren.org and read the
"Good Stories" section. There is also lots of info on development
and education. Our national website,
www.nfb.org/parents-and-teachers, is a treasure trove of fine information.
We are all with you as your family makes this huge adjustment. And
virtually everybody on this list would talk to you on the phone or
email off-list if you would like. Lean on us, we're here for you.
I hope you can think about coming to our national convention in the
summer in Orlando. It can be a life-changing (and life-saving)
experience for families. More information about it will be posted
over the next months.
Warmest wishes,
Carol
Carol Castellano
President, Parents of Blind Children-NJ
Director of Programs
National Organization of Parents of Blind Children
973-377-0976
carol_castellano at verizon.net
www.blindchildren.org
www.nfb.org/parents-and-teachers
At 10:34 AM 2/21/2013, you wrote:
>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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