2 Year CI Anniversary :)

CONGRATS ON THE ANNIVERSARY!!!!
Ashley developed ROP in the hospital. She has had 5 surgeries on her eyes trying to preserve as much of her sight as we can. I guess she was lucky that we have gotten her eyes stabilized for now. She has her reg. eye doc, a retina specialist, and a ped. glaucoma specialist following her eyes. At one point we were in danger of her retinas detaching. Like I said she has been lucky so far. I hope someday that is an option for people like you and Ashley. We are still not guaranteed that she will not loose her vision.
 
ashleysmommy said:
CONGRATS ON THE ANNIVERSARY!!!!
Ashley developed ROP in the hospital. She has had 5 surgeries on her eyes trying to preserve as much of her sight as we can. I guess she was lucky that we have gotten her eyes stabilized for now. She has her reg. eye doc, a retina specialist, and a ped. glaucoma specialist following her eyes. At one point we were in danger of her retinas detaching. Like I said she has been lucky so far. I hope someday that is an option for people like you and Ashley. We are still not guaranteed that she will not loose her vision.
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Thanks! :) Ashley sounds like she has alot of great specialists following her care. I also had several eye surgeries (3) before I was 5 years old. Unfortunately, all of them were unsuccessful -- although in many cases -- doctors are able to preserve some usable vision. When I was in the neonatal ICU, I was followed by an opthalmologist and retinal specialist who monitored my eyes on a daily basis.

If retinal implants become a reality, it will open up so many opportunities for those of us who lost our vision to retinal diseases like ROP. As you know, there is currently no medical treatment for retinal diseases.

If Ashley does lose her vision (which I pray doesn't happen), there are many excellent services for the deafblind. Doctors and specialists know so much more today about deafblindness than they did 20 or 30 years ago.

For example, I was misdiagnosed as having a learning disability from 3rd-12th grade. Being the old blind child in my school district, my teachers did not know how to educate me so the next best thing was to place me in a resource room for students with learning disabilities. During my junior year of high school I fought the system and was able to participate in honors courses.

During my freshman year of college, I asked to be given tests to determine whether or not I had a learning disability. All of the tests came back negative and indicated that I was performing 3-4 years above grade level. Any problems I may have had in school (particularly in math) were attributed to my blindness and hearing loss.

I was diagnosed with a mild hearing loss at age 3 (although my former HA audi thinks it may be congenital due to the fact that newborns weren't given hearing screenings in the 1960's and 1970's). Hearing aids and ear surgery were recommended at the time, but due to my parents' health insurance, I went without until age 15 when I received my first pair of BTE hearing aids for a moderately-severe loss.

I'm happy with the quality of education I received, but sometimes I find myself wondering how much better I could have functioned in school if I had received proper services for my blindness and hearing loss.
 
Oops! That should have read, "Being the *only* blind child in my school district..." Typos. You gotta love 'em! :giggle:
 
Hear Again: was there any medical condition that caused the premature retinopathy or is it just idiological? My dad is going to have laser surgery on one of his retinas in a couple of months (for different reason)
 
hohDougRN said:
Hear Again: was there any medical condition that caused the premature retinopathy or is it just idiological? My dad is going to have laser surgery on one of his retinas in a couple of months (for different reason)
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From what I understand, the retinopathy was caused by low birth weight (2 pounds), exposure to extremely high levels of oxygen (which permanently detached my retinas) and light from the incubator -- although I can't remember what kind of effect light levels have on retinal development or the lack thereof.

With the exception of my prematurity at 25 weeks, my mother had no complications during delivery. However, immediately after I was born I suffered from severe respiratory distress syndrome as well as 11 other medical conditions that warranted a 4 month stay in the neonatal ICU. My chances for survival were felt to be quite poor (I almost died twice), but somehow, someway -- by the grace of God -- I made it! :)

If you don't mind my asking, what condition is your father's retina being treated for? I hope the laser treatment is a success! :)
 
Hear Again said:
Wow, Boult! It sounds like you have some awesome audio equipment!

My stereo system pales in comparison to yours. I have a Fisher receiver from 1981, a Fisher double cassette deck from 1982, a Sony CDP-101 CD player from 1983 and Realistic Mach Two floor speakers from 1986. I wish I could afford better equipment, but I can't -- at least not now. :( Besides, alot of the audio components I've looked at aren't completely accessible to me due to their visual display and multiple "jog dial" functions. I also have over 20 boomboxes from the 70's and 80's as well as a variety of shortwave radios including a GE Superadio I, Superadio II and Superadio III. My latest find is a shortwave radio made by Kaito -- the WRX-911.

At the moment, I don't have a turntable although I plan to buy one at some point. I really should purchase one since I have over 100 LPs and 45s -- and nothing to play them on. :)

I hope you enjoy listening to your records again! If truth be told, I've always preferred the sound of LPs to CDs and cassettes. I know people have differing opinions about which sounds better, but for me, LPs seem to have a "warmer" sound compared to CDs and cassettes.

By the way, how do the Bose Acoutimass speakers sound? I've seen various TV commercials for the Bose Wave Radio and have always been curious as to how it sounds. I've heard that Bose has an excellent reputation when it comes to sound quality. Unfortunately, all of their equipment is out of my reach financially.

I mentioned this in another thread, but I have an extensive music collection (500+ CDs, 300+ cassettes, 100+ LPs and 100+ 45s. No 8-tracks. :)). I've been collecting music since I was 5 years old and many of the album titles I have are long out of print.
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OH bummer. I typed pretty sized post and clicked "submit reply" and it turns out that I was logged out for inactivity then I tries to log in and I lose what I typed so far and doesn't feel like typing again tonight eh LOL I'll pm you privately so I don't derail this thread :D
 
R2D2 said:
Your mum sounded a wonderful and loving woman Hear Again - it must take something to focus on someone else when you are in extreme pain yourself. She left you a gift of hope and not giving up on the prospect of hearing again.

Looking forward to reading your book! You'll have to keep us updated about when it's published as I would love to have a copy. I can be your first Australian reader :)
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Good posting, Artoo! I love how you said "she left you a gift of hope and not giving up on the prospect of hearing again."

Read with great interest on the exchange between Hear Again and Boult -- such technical expertise here! :cool:

I'm also looking forward to reading your book, Hear Again! It would be a wonderful tool for future deaf/blind babies and children (and adults, I'm sure)!
 
Originally Posted by R2D2
Your mum sounded a wonderful and loving woman Hear Again - it must take something to focus on someone else when you are in extreme pain yourself. She left you a gift of hope and not giving up on the prospect of hearing again.

Looking forward to reading your book! You'll have to keep us updated about when it's published as I would love to have a copy. I can be your first Australian reader

R2D2,

I didn't see your post until now. Yes, my mother was really an amazing person who always encouraged and inspired me in so many ways. :) She also taught me alot about dealing with extreme physical pain. Despite her poor health, never once did I hear her complain about having cancer. If God forbid I'm diagnosed with a terminal illness, I hope I have *half* the strength and courage she did. :)

I will definitely keep everyone updated on my book! Stay tuned! :)
 
greema said:
Good posting, Artoo! I love how you said "she left you a gift of hope and not giving up on the prospect of hearing again."

Read with great interest on the exchange between Hear Again and Boult -- such technical expertise here! :cool:

I'm also looking forward to reading your book, Hear Again! It would be a wonderful tool for future deaf/blind babies and children (and adults, I'm sure)!
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greema,

I also love R2D2's comment. :)

I'm glad you enjoy my posts on AD! :) I'm equally impressed by the information I've read here (especially from Boult)! I think it's great that we have so many experienced CI users who can offer encouragement to new CI candidates who visit this board.

By writing my book, I hope I can inspire others and let them know that deafblindness isn't the end of the world -- especially for parents of deafblind children. When I attended my local deafblind center, I met a wonderful woman who was deafblind herself. I considered her a role model and thanks to her, I quickly realized that it was possible to live a happy and productive life despite deafblindness. I hope I can do the same for others by writing this book! :)
 
If you don't mind my asking, what condition is your father's retina being treated for? I hope the laser treatment is a success!
He has had a few episodes of bleeding around his retina and effecting his sight. He had cortisone shot in his eye twice.....OUCH!:eek3:
 
hohDougRN said:
If you don't mind my asking, what condition is your father's retina being treated for? I hope the laser treatment is a success!
He has had a few episodes of bleeding around his retina and effecting his sight. He had cortisone shot in his eye twice.....OUCH!:eek3:
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Yikes! That sounds painful! :eek3: I sincerely hope the laser treatment he received will be successful! :)
 
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