1. On November 21, 2012 SJ cochlear implant was activated. They call this the hearing birthday. It was not the party I was expecting. She barely responded and she did not want to wear it. I tried to be positive and I didn't even expound too much about my disappointment on my blog, but I actually cried a lot after we left the audiologist that day.
2. SJ turned to her name for the first time, and made the B sound. We also had an appointment where the volume was turned up on her implant.
What may look insignificance was a huge milestone for SJ. It was exactly 6 months a
3. We enrolled SJ in a deaf school hours away and made plans to move along with scheduling the 2nd surgery so that she could be bilateral.
4. February was a big month for SJ because even though the surgery was scheduled the audiologist was not on board (because she is, in her words, conservative about these things) and we had to write to her respectfully disagreeing with her decision. We had run-ins with insurance as well, but following the advice of SJ's ENT, teachers, therapists, and our own intuition, we pushed through until we could get
was going to be best for our daughter and had the surgery approved.
After all that we geared up for surgery, and it was successful.
At this point I was able to see a little more response from SJ in terms of hearing, but not much and her school was concerned because their professional diagnosis showed that she was not even detecting speech sounds and needed a new mapping. And they were right!
5. At the end of February SJ was activated on her left side and hearing bilaterally for the fist time. Despite the direct requests from the school and ENT, SJ's audiologist still hesitated to add much volume to SJ's implants (again she was self proclaimed "conservative"). In the meantime SJ's was healing well and we were becoming more comfortable with the cochlear implant devices.
6. The school volunteered to have their audiologist take over with SJ's mapping and it was like NIGHT AND DAY! It is so important to have the right mapping (in layman's terms this is basically the setting/volume, it's a complicated process). When SJ had her CI's remapped in March she was really hearing most sounds for the first time and it was amazing to watch. She even said her first word, "up"
7 & 8. SJ continued to grow leaps and bounds once she had the proper mapping she was consistently turning to environmental sounds and to her name. She started saying uh-oh, more, and some animal noises on her own and many other words with prompting.
9. We raised money for SJ to be able to go to summer school and her vocabulary continued to grow to up to 20 words. Some days were better than others as far as communication related frustration and cooperation with even wearing the implants, but we were excited about the upcoming school year where SJ would be going full time.
10. On SJ's first day of school we had to pick her up early to have a CT scan at the children's hospital because her right implant was causing her pain. The scans came back fine, but apparently she had some shifting that is not traumatic, but does take a few weeks to heal before the scar tissue sets the device back into place. This was scary, but praise the Lord everything turned out fine.
11. At this point between IEP meetings, a research study group, and observations. I felt like things were at a stand still again. It's hard to see your child be so far behind her peers, but luckily I now know that it gets better.
12. In October SJ had a breakthrough. She can now refers to several people by name and she knows over 60 words. Everyday I hear her saying new things and I really, Really, REALLy believe that the worst is behind us this time.
At this point I was able to see a little more response from SJ in terms of hearing, but not much and her school was concerned because their professional diagnosis showed that she was not even detecting speech sounds and needed a new mapping. And they were right!
5. At the end of February SJ was activated on her left side and hearing bilaterally for the fist time. Despite the direct requests from the school and ENT, SJ's audiologist still hesitated to add much volume to SJ's implants (again she was self proclaimed "conservative"). In the meantime SJ's was healing well and we were becoming more comfortable with the cochlear implant devices.
6. The school volunteered to have their audiologist take over with SJ's mapping and it was like NIGHT AND DAY! It is so important to have the right mapping (in layman's terms this is basically the setting/volume, it's a complicated process). When SJ had her CI's remapped in March she was really hearing most sounds for the first time and it was amazing to watch. She even said her first word, "up"
7 & 8. SJ continued to grow leaps and bounds once she had the proper mapping she was consistently turning to environmental sounds and to her name. She started saying uh-oh, more, and some animal noises on her own and many other words with prompting.
9. We raised money for SJ to be able to go to summer school and her vocabulary continued to grow to up to 20 words. Some days were better than others as far as communication related frustration and cooperation with even wearing the implants, but we were excited about the upcoming school year where SJ would be going full time.
10. On SJ's first day of school we had to pick her up early to have a CT scan at the children's hospital because her right implant was causing her pain. The scans came back fine, but apparently she had some shifting that is not traumatic, but does take a few weeks to heal before the scar tissue sets the device back into place. This was scary, but praise the Lord everything turned out fine.
11. At this point between IEP meetings, a research study group, and observations. I felt like things were at a stand still again. It's hard to see your child be so far behind her peers, but luckily I now know that it gets better.
12. In October SJ had a breakthrough. She can now refers to several people by name and she knows over 60 words. Everyday I hear her saying new things and I really, Really, REALLy believe that the worst is behind us this time.
*I am going to get a better video up soon! One where she is talking on her own without being fed all the answers!
3 comments:
Wow, what amazing progress she has made! Thanks for sharing your journey, even though it's not my journey, I have loved learning more about yours!
Just amazing. Think of how much development she has gone through in such a short time. You must love hearing that little voice!
She has made such progress!! Yay, SJ!! I'm so glad you got the proper mapping and have been able to see so much improvement. I love seeing the videos, even though I've seen most of them already! :)
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