Alexander and Lily

Alexander and Lily

Saturday, May 23, 2009

CI Candidacy Stuff

All of the CI Candidacy appointments are now complete except for the CT scan, scheduled for Friday, May 29th. The CI team is supposed to go ahead and review her on Thursday, May 28th, pending the results of the CT scan. They aren't expecting to find any surprises from the CT scan since Lily has Connexin 26.

The pre-CI audiology appointment was last week. We picked the colors and brand of cochlear implant we want for Lily. We are going with the Nucleus Freedom from Cochlear for Lily. We didn't look very closely at the other brands because the internal part of the implant on the Freedom is smaller than the other brands. Our audiologists explained that the surgeon prefers this brand for babies since it is so small. We definitely want a brand that our surgeon and audiologists are comfortable working with. The audiologists also told us that Cochlear does a good job of making their upgrades backward compatible so that Lily will be able to take advantage of the upgrades without having another surgery. Basically, the newer and better external parts that will come out in the future should be compatible with the internal parts Lily will already have.

In her blog, Aiden's mom wrote a fantastic summary of the 3 different cochlear implant brands and the reasons they chose the Nucleus Freedom from Cochlear. Lily's daddy and I like Cochlear for many of the same reasons that Aiden's mom highlighted. Right now the only decision I'm not sure about is the controller option. Our audiologists highly recommended the bodyworn controller option and the babyworn controller option as a back up. They think we should start with the bodyworn because it beeps if the coil (the external magnet) comes off of Lily's head. This lets us know if Lily is without sound. Although I like that feature, I think I would prefer for her to wear the babyworn controller. The babyworn just clips to her clothes, whereas the bodyworn has to be worn in a harness, in special onesies with pockets, or in pockets that I would have to sew on all of her clothes. I'm thinking I want 2 babyworn controllers, one to wear and one as a back up. We would get one in beige for her to wear now (since she has very little hair) and one is chocolate brown for her to wear when she gets more hair.

Any experienced CI mommies have any thoughts? Which controller option do you use and why do you like it or not like it? Thanks in advance. I don't know what I'd do without the help of those of you who've already been there!

Saturday, May 16, 2009

1 Down, 4 to Go

We had the first of several evaluations for the CI candidacy on Wednesday. The occupational therapist evaluated Lily and told us that she is above average in both gross motor and fine motor skills. She is quite a bit above average with her balance. This is a bit surprising to me because I thought hearing loss would cause some balance issues. So far it hasn't.

The rest of the evaluations have also been scheduled. We see the neuropsychologist and social worker this Wednesday, the CI audiologists this Friday, and radiology for her CT scan next Friday. I'm a little nervous about the CT scan because they have to give her IV sedation. We tried to get the scan back in January, but she wouldn't stay asleep with the rectal sedative. The day of the scan she won't be able to eat for several hours, which is sure to make her nice and grumpy. I know it will all be worth it in the end.

Once the evaluations are complete (May 29th), the CI team will decide if Lily is a candidate on June 4th. We will then schedule the surgery and submit it to insurance. Please pray as we move forward with Lily's journey to the hearing world.

Monday, May 11, 2009

My First Mother's Day with my Sweet Lily

Cochlear Implant Candidacy Process

We met with Lily's ENT on Thursday and we all agreed that Lily is not benefiting from her hearing aids. She has NEVER responded to environmental sounds and in the booth she has responded at 80 to 95 dB. Lily's ENT and cochlear implant surgeon is Dr. Kang at Nationwide Children's Hospital in Columbus. We disucussed with him our wishes to have her bilaterally implanted in July when she is 8 months old. He told us he had no problem doing the surgery at 8 months but he wasn't hopeful that insurance would approve it before 12 months. He explained to us that even though some insurance companies have approved it younger than 12 months in the past, many companies are starting to deny claims before 12 months. So I'm afraid we may have a battle ahead of us.

The next step: complete several evaluations to determine if Lily is a candidate for cochlear implants. The following are the evaluations we will be scheduling in the next few weeks.

1. Medical Evaluation: Lily will have a CT scan to make sure there are no malformations of her inner ear that may impact the surgery.
2. Audiological (Hearing) Evaluation: More extensive sound booth testing and education for her daddy and I about cochlear implants.
3. Speech/Language Evaluation: Lily's expressive language (verbal and/or sign) and receptive language (understanding verbal and/or sign) will be assessed with her hearing aids on to determine if cochlear implants will benefit her.
4. Developmental Evaluation: A psychologist will evaluate Lily's visual learning and development/behavior.
5. Social Work Evaluation: A social worker will assess child and family functioning, family strengths and challenges and discuss support resources. Family expectations for cochlear implants and further education will also be discussed. Basically, I think this evaluation is to determine if Lily's daddy and I wil follow through with the therapy and education that is necessary for the implants to be successful.
6. Occupational Therapy Evaluation: The occupational therapist will assess Lily's balance and motor abilities and sensory responsiveness to touch and movement.

When all of these evalutions are complete (end of June) the cochlear implant team will determine if Lily is a candidate for surgery (first of July) and then we try to get approval from insurance. We're praying for immediate approval so we can have surgery at the end of July. We really want Lily to be able to hear as soon as possible.