Our Journey

beba

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I am new to the site. I have 4 children and 2 have hearing loss. my four yr old has hearing loss in one ear and my 1yr old is sesverly to profoundly deaf. I came to this site in order to get help and have other ppl to relate to. Our journey has been nothing close to easy. My 1yr old started with hearing aids and now has 1 aid and 1 cochlear. the cochlear he has was recalled. he got implanted in July and still cant hear. he does use asl and I pretty much think the implant was not a good choice since it hasnt worked. this link is the story on 3 of my sick kids. this was b4 isaiah was activated....pages 8 and 9 ..... copy n paste to address bar if u have to


http://xa.yimg.com/kq/groups/4673422/184033326/name/issue+50,+September+2011.pdf
 
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Welcome! I saw your other posts in the other thread. I'm so happy you are already using ASL. Please stick around on the site and share more with us.
 
thank u...i will be on here a lot. btw its page 8 and 9 just edited the post
 
thank u. isaiah has one phonak in baby blue. his cochlear is white nucleus5

baby blue is cute! I'm guessing he has a Naida :)
for me, I have 2 cool looking hearing aids that I wear in both ears *see my avvie*
 
You know, I have a rare chromosome disorder too! You're the second mom to post about their kid with a rare chromosome disorder! (someone posted about their kid having a 7 chromosome deletion)
So is Issiah kind of like a kid with CHARGE? It's good that you have the resources of Perkins, since they have the deaf-blind program there. Is he going to go there when he's older? From what I understand, ASD seems to be very academic, and not good for kids with more complex issues. That can be an issue when you get into more complex issues.
 
After reading.......he has a microdupiclation of 9p? Are you members of Chromosome Deletion Outreach or SOFT? (Support Organization for Trisomy 13/18) The CDO site is down at the moment, but there's info listed on the Trisomy site for 9p Trisomy..... Other Contacts | Trisomy
 
You know, I have a rare chromosome disorder too! You're the second mom to post about their kid with a rare chromosome disorder! (someone posted about their kid having a 7 chromosome deletion)
So is Issiah kind of like a kid with CHARGE? It's good that you have the resources of Perkins, since they have the deaf-blind program there. Is he going to go there when he's older? From what I understand, ASD seems to be very academic, and not good for kids with more complex issues. That can be an issue when you get into more complex issues.

He has many disorders. 22q 9p and something else. it might be chrge we dont know yet. genetics is still testing. I hope asd will meet his needs. i love perkins i miss it so much. he is actually starting besby....i guess its like perkins but for CT.
 
After reading.......he has a microdupiclation of 9p? Are you members of Chromosome Deletion Outreach or SOFT? (Support Organization for Trisomy 13/18) The CDO site is down at the moment, but there's info listed on the Trisomy site for 9p Trisomy..... Other Contacts | Trisomy

we are connected with Unique. They write about the rare disorders. the kids are in the articles. i also use rarechromo.com
 
:) thank u. I liked when he had 2 aids. now i have to work with both cochlear and aid

alot of work huh? well my other hearing aids has the piece 4 it that were really hard 2 put 2gether but now with my 3rd set, it's easy as pie :D
 
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