[blindkid] an update on Joey

*2sday* tuesday0728 at yahoo.com
Thu Feb 21 15:34:21 UTC 2013


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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