Lately, I have become a tad paranoid about having Toes's pictures so prominently and openly displayed on the internet.
Last night, after laying sleepless for an hour stewing over it, I decided to get up and remove the pictures from the first few pages. It seemed like the only way I would get any sleep.
I am going back and forth on whether I want to put them back. I miss them. The blog seems empty and characterless without them.
So, I posted a poll. Share your thoughts in Comments.
What would you do? How do you feel about the blog without them? What are your thoughts on the safety of the internet in regard to posting pictures of children?
Saturday, July 28, 2007
Friday, July 27, 2007
Audiological Evaluation
On June 26, we had Toes’s Audiological Evaluation. The purpose of this eval was to provide the CI Team with the data needed to put together the insurance justification for her Sequential Bilateral Implant Surgery.
It is such a grueling process with a two year old! It takes a lot of effort to keep her attention focused enough for the audiologist to read her cues. It took about 45 minutes to run the tests that had to be run. Dad to Toes and her original audiologist both ended up in the booth with Toes, trying to tag team keeping her attention on the tests so the CI Audiologist could perform the testing.
First, she tested her hearing with her implant on. She clearly tested down to 20 db, with some evidence that she is hearing at an even lower level. Yay, Toes!
Then, her hearing was tested on the left side, with no implant. As expected, she is testing at 90 – 100 db in her left ear. Which is on the “Profound” side of a “Severe to Profound” hearing loss.
Her hearing on the right side was tested without her processor on to see what, if any, residual hearing is left. She tested at 115 db on her right side, which is a level that could indicate she is actually picking up vibration… not sound. This indicates that she did lose her residual hearing due to the implant surgery. Even though this is typical and totally expected, I couldn’t help but be a little sad that she had lost the 15 – 25 db post implant.
Next, we pulled out her hearing aid to test her left ear aided. With her hearing aid in, she tested at 40 – 60 db for most speech tones. Still well outside of the range needed to develop language. It was clear that a second implant is warranted.
By this point in the process, Toes was “all done!” with her testing. It was so sweet to look in the sound booth and see her frantically signing “all done” to Dad to Toes and her first audi. She was covered in chocolate from the incentives that are given to reward her for reacting to the tones. I wish I had brought the camera to document the visit.
Whoever said M&Ms “Melt in your mouth, not in your hands” never met Our Toes. :-P
They had wanted to get one final test completed, an OAE. But given Toes’s state of mind we opted to skip it. The audi said she had more than enough data to write her report for insurance approval.
We received a copy of the report and her “Speech Banana” this past week. I will scan and post the graph next week. Like most Parents of a CI Kid, that bananagram is burned in my brain and probably will be the rest of my life. It is almost like a fingerprint. It is Uniquely Toes.
Next step is a visit to the Surgical ENT to finalize things and hopefully get a surgery date. That appointment is July 31. We think the surgery date will likely be in September or October. We want to allow plenty of time for this to go through the insurance process, so that we don’t end up with a heartbreaking last minute approval like last time.
We do not expect too much trouble from our insurance company on the approval. But, we have heard they do like to drag the approval process out as long as 90 days. We are prepared to wait!
It is such a grueling process with a two year old! It takes a lot of effort to keep her attention focused enough for the audiologist to read her cues. It took about 45 minutes to run the tests that had to be run. Dad to Toes and her original audiologist both ended up in the booth with Toes, trying to tag team keeping her attention on the tests so the CI Audiologist could perform the testing.
First, she tested her hearing with her implant on. She clearly tested down to 20 db, with some evidence that she is hearing at an even lower level. Yay, Toes!
Then, her hearing was tested on the left side, with no implant. As expected, she is testing at 90 – 100 db in her left ear. Which is on the “Profound” side of a “Severe to Profound” hearing loss.
Her hearing on the right side was tested without her processor on to see what, if any, residual hearing is left. She tested at 115 db on her right side, which is a level that could indicate she is actually picking up vibration… not sound. This indicates that she did lose her residual hearing due to the implant surgery. Even though this is typical and totally expected, I couldn’t help but be a little sad that she had lost the 15 – 25 db post implant.
Next, we pulled out her hearing aid to test her left ear aided. With her hearing aid in, she tested at 40 – 60 db for most speech tones. Still well outside of the range needed to develop language. It was clear that a second implant is warranted.
By this point in the process, Toes was “all done!” with her testing. It was so sweet to look in the sound booth and see her frantically signing “all done” to Dad to Toes and her first audi. She was covered in chocolate from the incentives that are given to reward her for reacting to the tones. I wish I had brought the camera to document the visit.
Whoever said M&Ms “Melt in your mouth, not in your hands” never met Our Toes. :-P
They had wanted to get one final test completed, an OAE. But given Toes’s state of mind we opted to skip it. The audi said she had more than enough data to write her report for insurance approval.
We received a copy of the report and her “Speech Banana” this past week. I will scan and post the graph next week. Like most Parents of a CI Kid, that bananagram is burned in my brain and probably will be the rest of my life. It is almost like a fingerprint. It is Uniquely Toes.
Next step is a visit to the Surgical ENT to finalize things and hopefully get a surgery date. That appointment is July 31. We think the surgery date will likely be in September or October. We want to allow plenty of time for this to go through the insurance process, so that we don’t end up with a heartbreaking last minute approval like last time.
We do not expect too much trouble from our insurance company on the approval. But, we have heard they do like to drag the approval process out as long as 90 days. We are prepared to wait!
Milestones
I haven’t updated for awhile because things have sort of become pretty routine lately. I recently realized that I still need to be celebrating all of these small milestones in Toes’s hearing development! So, here we go…
Toes is starting to really appreciate music. I keep a Laurie Berkner CD in one of the slots in my car stereo. When she wants to hear the CD, she says “ick!” and taps on her ear.
I have developed hand gestures to some of the songs that I can perform while driving one handed. (Shh! Don’t tell my high school driving instructor!) We have been doing this for about a week, and already Toes anticipates the upcoming gestures and performs them based on the cues in the music. I don’t even need to demonstrate them anymore. Our little Rock Star!
She still does not speak any words 100% clearly. Even her favorites are a tad off.
For example…
Airplane = Ahh-peen
Outside = Ow-sigh
Applesauce = Appuh-sss
All gone = Ah guh
All done = Ah duh
Her therapist said our main focus right now is on developing language, not perfect forms of the words. So we are working on getting her to use two and three words sentences, and to get those hard consonants out at the beginnings of words.
I think “buh-buh-buh-buh-ubbles” will start being used pretty frequently around the house. ;-)
I’ll update about the status of her Sequential Bilateral surgery in a separate post.
Toes is starting to really appreciate music. I keep a Laurie Berkner CD in one of the slots in my car stereo. When she wants to hear the CD, she says “ick!” and taps on her ear.
I have developed hand gestures to some of the songs that I can perform while driving one handed. (Shh! Don’t tell my high school driving instructor!) We have been doing this for about a week, and already Toes anticipates the upcoming gestures and performs them based on the cues in the music. I don’t even need to demonstrate them anymore. Our little Rock Star!
She still does not speak any words 100% clearly. Even her favorites are a tad off.
For example…
Airplane = Ahh-peen
Outside = Ow-sigh
Applesauce = Appuh-sss
All gone = Ah guh
All done = Ah duh
Her therapist said our main focus right now is on developing language, not perfect forms of the words. So we are working on getting her to use two and three words sentences, and to get those hard consonants out at the beginnings of words.
I think “buh-buh-buh-buh-ubbles” will start being used pretty frequently around the house. ;-)
I’ll update about the status of her Sequential Bilateral surgery in a separate post.
Wednesday, July 25, 2007
Moved and Amazed
Like many moms out in Blog Land, I have begun checking RachD's blog for Hannah and Lily several times a day.
I am so moved by the comments by other people. And amazed at the number of brand new blogs I have seen created by those inspired by Rachael and Hannah.
Rach's sister, Jess, first inspired me to start a blog to document Erin's CI Journey. So I can relate to the contagious effects of a good blog. But the reaction to this blog seems unprecedented
I can spend hours just looking at the blogs of all the people who have commented on the blog. It is such a wonderful and endless web! All built on people who have been touched by Hannah's life and Rachael's depiction of it.
If you haven't been to Rachael's blog yet, I encourage you to visit and take a look around. I am sure you will be moved as well.
I am so moved by the comments by other people. And amazed at the number of brand new blogs I have seen created by those inspired by Rachael and Hannah.
Rach's sister, Jess, first inspired me to start a blog to document Erin's CI Journey. So I can relate to the contagious effects of a good blog. But the reaction to this blog seems unprecedented
I can spend hours just looking at the blogs of all the people who have commented on the blog. It is such a wonderful and endless web! All built on people who have been touched by Hannah's life and Rachael's depiction of it.
If you haven't been to Rachael's blog yet, I encourage you to visit and take a look around. I am sure you will be moved as well.
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