Almost made me cry

Lillys dad

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Lilly and I were driving in my truck today listening to music. She stopped singing and dancing. She had a sad look on her face. I asked her what was wrong. While keeping the sad look, she pointed at her left ear (non implanted ear) and said "No Music".
I think this is her way of telling me that she wants to hear out of that ear.
 
Lilly and I were driving in my truck today listening to music. She stopped singing and dancing. She had a sad look on her face. I asked her what was wrong. While keeping the sad look, she pointed at her left ear (non implanted ear) and said "No Music".
I think this is her way of telling me that she wants to hear out of that ear.


awww... she knew.. :)
 
awww... poor thing..
You must be Daddy's little girl. She want to hear more. She knew what she want.
 
Oh well... Lilly's dad, Do you did tried to put hearing aid on Lilly's left ear? If not then go ahead to get 2nd CI on left ear.

Good luck with 2nd CI for Lilly.
 
That's so amazing. She and Emma sound alot alike..they both know what they want. I hope she doesn't have to wait long...we are having a nightmare right now with insurance for her bilateral. I was just told also that Let them Hear foundation has stopped dealing with Cochlear? Has anyone else heard that? Good luck to Lilly..she sounds like an amazing little girl!!!
 
Lillys dad,

Oh, that would have made me cry too! Lilly knows exactly what she's missing! :)

MomtoIsandEm,

I participate on a listserv with several members who have recently dealt with Let Them Hear. As soon as I find out the answer to your question, I'll post it here.

Hear Again

Left ear - Nucleus 24 Contour Advance with 3G
Implanted: 12/22/04 Activated: 1/18/05

Right ear - Nucleus Freedom
Implanted: 2/1/06 Activated: 3/1/06
 
Thanks so much Hear Again....my surgeon's office told me that and I just wanted to know if anyone else had heard that because everyone advises to contact them.

Sorry to get off topic Lilly's Dad.
 
Lilysdad! That's awesome that she's expressed that she wants to hear in her other ear!
 
Pacman, She has worn a HA in her left ear for the last year and a half. Last summer she lost more hearing in that ear. She gets almost no use from her HA. The audis say that we should still make her wear it to keep the nerves stimulated.
Trust me, if there was a possibilty of waiting until she was older so she could make the decision we would. We were also told that by two of the leading experts in CI in the region, that by the time any cure for senseo neural hearing loss was available for her, she would not be able to take advantage of it.
When Lilly first told me that, as I said, I almost cried. After thinking about it, it makes me very happy. As I said above, we wanted to wait for Lilly to make the decision about a second CI. SHE DID!!!! It was just alot sooner than we expected.

"That's so amazing. She and Emma sound alot alike..they both know what they want. I hope she doesn't have to wait long...we are having a nightmare right now with insurance for her bilateral. I was just told also that Let them Hear foundation has stopped dealing with Cochlear? Has anyone else heard that? Good luck to Lilly..she sounds like an amazing little girl!!!"

She is one of the most amazing people that I've ever met! And she is only 2 1/2 years old. As far as getting off topic, not problem. We went through the same fight all last summer. In fact, the fight just ended the other day when I signed up with the new ins co through work. My employer shopped for a new ins. co with the intent of gettign a bilateral for Lilly. Aetna Ins has repeatedly stated they would cover the whole thing. Our new ins starts dec.1. We already gave the ins co all of the necessary paperwork to get them going. We also took care of the audi testing on her left ear through the hospital (out of pocket). The only things left are to schedule the surgery, and possibly have another MRI.

My advice to you, never stop fighting. We went through several denials and appeals. I was in starting to ask for the help of let them hear.com. Have you considered trying to get sponsered through the Shriners or Scottish Rite?
 
MomtoIsandEm,

(My apologies to Lilly's dad for interrupting your thread).

Unfortunately, it looks as if this is true -- that Let Them Hear will no longer be working with those who wish to receive CIs from Cochlear Americas.

Here is a copy of a letter that appeared on their website:

Let Them Hear Foundation :: Advocacy

Advocacy Program Letter
The Advocacy Program of the Let Them Hear Foundation has produced remarkable and encouraging results for patients denied coverage by an insurer for single sided or bilateral cochlear implantation. Over 425 cases have been undertaken, over 70 % of which relate to cochlear implants. Almost every state in the USA is geographically represented in the case mix. In over 200 cases, decisions have been rendered with 100% success to date! Altogether, the denials that have been overturned represent over $8 million dollars worth of cochlear implants and services delivered to children and adult patients due to the efforts of the Advocacy Program team. Additionally, over 50 million Americans previously without coverage for single sided or bilateral cochlear implantation now have coverage under their insurance plans. I know of no other source for patients where this expertise exists and such an impact has been made.

Since inception of this program, we have provided Advocacy Program services free of charge to all patients. Due to its success and the overwhelming popularity of this program, the amount of funding available to continue with the work has reached a critical level.

Regrettably, the Board of Directors of the LTHF has instructed me to stop Advocacy Program work on all cases involving patients who want Cochlear Corporation or MedEl Corporation products. Despite extensive discussions with these companies and other potential donor sources, we have not been able to achieve sustainable funding for Advocacy Program services for patients desiring Cochlear or MedEl products as of this date.

It is my pleasure, however, to announce an arrangement which allows the LTHF Advocacy Program to continue its work for some patients – specifically for patients desiring Advanced Bionics products. At a fundraising event October 19, 2006, I was delighted and honored to make the following announcement:

“Advanced Bionics, a Division of Boston Scientific Corporation, has been pleased to support the LTHF Foundation's Insurance Advocacy Program since January 20, 2006. This Visionary Program was developed to improve access and reimbursement coverage for patients seeking Bilateral CIs. It is well documented that bilateral implantation can improve the quality of hearing in many everyday listening situations and can provide significant advantages over unilateral implantation. The LTHF’s Advocacy Program has been extremely successful in overturning insurance denials as well as changing some insurers’ policies for future cases. Because of the efforts of LTHF, hundreds of patients have been provided insurance access for Bilateral CIs.

I am pleased to announce this evening that Advanced Bionics and Alfred E. Mann have agreed to continue their relationship with the LTHF’s Advocacy Program for the next three years. This relationship will assist the Foundation in continuing its wonderful work to expand access for patients seeking Bilateral CIs. In addition, the LTHF Foundation and Alfred Mann are working together to develop new humanitarian initiatives to assist the hearing impaired who are uninsured or denied the Gift of Hearing because of economic hardship.”

Patients or their representatives who are interested in assisting with funding for individual cases or those of others who desire Cochlear Corporation or MedEl products can contact our office for more information at 877-HEAR HELP.

Sincerely,

Dr. Joseph Roberson
Founder and President
Let Them Hear Foundation

October 22, 2006


Hear Again

Left ear - Nucleus 24 Contour Advance with 3G
Implanted: 12/22/04 Activated: 1/18/05

Right ear - Nucleus Freedom
Implanted: 2/1/06 Activated: 3/1/06
 
Lilly and I were driving in my truck today listening to music. She stopped singing and dancing. She had a sad look on her face. I asked her what was wrong. While keeping the sad look, she pointed at her left ear (non implanted ear) and said "No Music".
I think this is her way of telling me that she wants to hear out of that ear.


Awww, she just sounds adorable and you obviously have a very loving relationship with her for her to express those thoughts. I hope that this can be achieved for her and that the process is straightforward after December.
 
:ty: A s far as the relationship between Lilly and I is concerned, my wife says that I am Lillys favorite toy. When I am not at work, and she is not in school, we are pretty much insperable. She is total daddys girl, and I love it!
You all can bet your a$$ that I will let eveeyone know when she is going to have the surgery.
 
Pacman, She has worn a HA in her left ear for the last year and a half. Last summer she lost more hearing in that ear. She gets almost no use from her HA. The audis say that we should still make her wear it to keep the nerves stimulated.
Trust me, if there was a possibilty of waiting until she was older so she could make the decision we would. We were also told that by two of the leading experts in CI in the region, that by the time any cure for senseo neural hearing loss was available for her, she would not be able to take advantage of it.
When Lilly first told me that, as I said, I almost cried. After thinking about it, it makes me very happy. As I said above, we wanted to wait for Lilly to make the decision about a second CI. SHE DID!!!! It was just alot sooner than we expected.

"That's so amazing. She and Emma sound alot alike..they both know what they want. I hope she doesn't have to wait long...we are having a nightmare right now with insurance for her bilateral. I was just told also that Let them Hear foundation has stopped dealing with Cochlear? Has anyone else heard that? Good luck to Lilly..she sounds like an amazing little girl!!!"

She is one of the most amazing people that I've ever met! And she is only 2 1/2 years old. As far as getting off topic, not problem. We went through the same fight all last summer. In fact, the fight just ended the other day when I signed up with the new ins co through work. My employer shopped for a new ins. co with the intent of gettign a bilateral for Lilly. Aetna Ins has repeatedly stated they would cover the whole thing. Our new ins starts dec.1. We already gave the ins co all of the necessary paperwork to get them going. We also took care of the audi testing on her left ear through the hospital (out of pocket). The only things left are to schedule the surgery, and possibly have another MRI.

My advice to you, never stop fighting. We went through several denials and appeals. I was in starting to ask for the help of let them hear.com. Have you considered trying to get sponsered through the Shriners or Scottish Rite?

I haven't hear about Shriners but Scottish is person who from Scotland?

Yea, I had remember that I used got good benefit with HA when younger then got worse but haven't wear HA for around 6 years and it was much changed because I almost lost all benefit with HA on left ear, and right ear was implanted. I took hearing test in last July and audiologist said that my hearing is poor compared to 10 years ago because I had check out some of record on audiogram. Hear Again is right about some people's hearing is got worse but not surprised about it, and it does happen to several of my friend but one of my friend is almost become profound deaf and used to be mild when he was younger. He don't want get CI due concern with cornrow.

Just warning, Lilly has CI on right ear and seems cannot scan with MRI but she can scan with CT. I know that few CI users have been scan with MRI due serious injury without any information, such as no necklace or band but in 2003, it did happen to me due bad accident with skateboard when car was ran and end up about several hours. I just like pain in head and told doctor that cannot scan with MRI due medical reason (CI) but it was accident and cannot blame on doctor then I just accept that CI isn't work so properly. I don't have necklace or band, that why. It was brought to local hospital instead of children hospital because it was located in around 15-20 miles.

For now, I had hard time to make decision for get re-implant but insurance will cover for replace and upgrade into Freedom, and insurance was changed their mind to cover it. Audiologist told me that insurance will cover it but if not then they will make deal with insurance, such as fight with them.

Every children have different feeling about hearing loss.
 
I haven't hear about Shriners but Scottish is person who from Scotland?

Yea, I had remember that I used got good benefit with HA when younger then got worse but haven't wear HA for around 6 years and it was much changed because I almost lost all benefit with HA on left ear, and right ear was implanted. I took hearing test in last July and audiologist said that my hearing is poor compared to 10 years ago because I had check out some of record on audiogram. Hear Again is right about some people's hearing is got worse but not surprised about it, and it does happen to several of my friend but one of my friend is almost become profound deaf and used to be mild when he was younger. He don't want get CI due concern with cornrow.

Just warning, Lilly has CI on right ear and seems cannot scan with MRI but she can scan with CT. I know that few CI users have been scan with MRI due serious injury without any information, such as no necklace or band but in 2003, it did happen to me due bad accident with skateboard when car was ran and end up about several hours. I just like pain in head and told doctor that cannot scan with MRI due medical reason (CI) but it was accident and cannot blame on doctor then I just accept that CI isn't work so properly. I don't have necklace or band, that why. It was brought to local hospital instead of children hospital because it was located in around 15-20 miles.

For now, I had hard time to make decision for get re-implant but insurance will cover for replace and upgrade into Freedom, and insurance was changed their mind to cover it. Audiologist told me that insurance will cover it but if not then they will make deal with insurance, such as fight with them.

Every children have different feeling about hearing loss.
oh boy you have no clue about "Shriners" and "Scottish Rite" They are just organizations! Have you ever seen a parade where those gentlemen from Shriners driving a small cars weaving around in circle. ?

Lily's dad saying
Have you considered trying to get sponsered through the Shriners or Scottish Rite?
That's is a question about getting sponsorships from either of those two organizations.

Your warning about MRI were silly! and not necessary. BECAUSE he can tell the doctors that she has CI and the magnet from the implant will be taken out thru small incision before performing MRI scan. Although If MRI is NOT really needed then CT-Scan will be used instead. MRI will be taken only if in extreme case that the doctor feel so.

I can say that I don't know why your doctor ignored your warning about you having CI and that MRI can't be used unless the magnet are taken out.

Some MRI equipment can be used if the Tesla strength are lower and that magnet won't need to be taken out.

Only I know that the HiRes 90K implant from AB can go thru MRI without removing magnet or with removing magnet depending on which Tesla are used. source:MRI and the Cochlear Implant
The United States Food and Drug Administration (FDA) cleared the HiResolution® Bionic Ear System's HiRes 90K® implant for Magnetic Resonance Imaging (MRI) at 0.3 Tesla and 1.5 Tesla with the internal magnet removed.
There's more information regarding MRI and CI at the link above.
 
Boult: Your warning about MRI were silly! and not necessary. BECAUSE he can tell the doctors that she has CI and the magnet from the implant will be taken out thru small incision before performing MRI scan. Although If MRI is NOT really needed then CT-Scan will be used instead. MRI will be taken only if in extreme case that the doctor feel so.

That was Fragmenter told us about just in case Marshall needed a MRI scan (uh, Frag did you mention CT-scan too?)...

Lillys dad, I can actually picture Lilly's sad little face... No child is too young to tell you what he/she feels or wants! Even Frag's sister told us on VP (and I've actually seen it happen, via the VP of course as they are in Florida and we're in Missouri) her 7-plus month old daughter (HOH) indicates when she want to stand up with her mother's help, be picked up, wants her bottle, etc.

Wish Lilly the best on receiving the next CI!
 
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