Ever since Katherine got officially diagnosed with having a severe hearing loss getting a cochlear implant has been on my mind. We were initially told she was too delayed for an implant by the doctor who did the hearing test so I put off looking into it for a bit. And then I got sidetracked being sick and ended up on medical leave. During my time in the States I had time to research and think about the next step for each of my kids. It became evident to me that my next step with Katherine should include at least looking to a cochlear implant.
For Katherine getting a cochlear implant would help give her alternative means of communication. Because of her physical disability sign language is not an option. And most communication devices use either vision or hearing. But with her hearing and vision gone our communication options are limited to picture symbols which aren’t functional long term. My main hope for her with the implant is to give her a way to communicate with the world around her. Right now she is so cut off from anything that stimulates her. She is so caught in her own world and when we try to expose her to the world around it so over stimulating that she shuts down and goes to sleep. Her world consists of sleeping and eating. Getting some hearing is her best chance to break out of her own world and gives her the best shot at getting some better communication in place.
Katherine and I have been all over the hospital this week going to all the doctors that she needed to see. Luckily she has a friend to come with her! Eden, another baby living at Rescue, is deaf/blind as well so we’ve been able to combine a lot of appointments. The week of Christmas Katherine got her MRI/CT scan done. Her cochlear nerve was intact and fine so we were able to move forward and see more doctors.
We had to see an ophthalmologist who has quite helpful with Katherine. I had always thought that her vision loss might have more to do with her brain and less with her eyes and I was right. She can see and track some lights but not objects right now. The good thing is that with some vision therapy she can regain some of her vision. I’m going to start doing some work with her on her vision, if you’re interested in helping I put some items that we need for therapy on my Amazon India wishlist that need to be purchased! We’re also getting her glasses to see if they make a difference. Hopefully with some work we will see some small improvements with her ability to see some objects and lights. She will always be legally blind but if she can get some more functional vision that will help her in the future.
The next doctor we saw as the Neurologist. She thought that getting the cochlear implant would help simulate Katherine’s physical and brain development. Katherine has delays in all areas but I believe some of it is due to her lack of stimulation. Only have 3 of her 5 senses has really impacted her development. I believe she’s capable of so much but limited by her lack of communication and stimulation. The Neurologist seemed to agree and recommended she got a cochlear implant even if benefits might not be as great as it would be for a developmentally normal child. I have been really impressed with every doctor we saw. I went into this expecting a fight and I was ready to go to bat for Katherine. So it’s been refreshing to have doctors agree with me and see some potential in a child that’s easy to write off.
After seeing the ophthalmologist and neurologist we ended up back at the ENT who looked at all the reports. He agreed that Katherine (and Eden) are candidates for a cochlear implant! He sent us to the man who runs SAHI, which is the organization that gives cochlear implants for free. We filled out their application and will return it today. And Friday we will go in for an interview with the committee and they will decide if they will give the implant for free. This organization typically likes to give implants to kids who are developmentally typical but we are really praying that we can convince them that Katherine and Eden are worth it. We all know just how wonderful they are and how much they would benefit from a cochlear implant so hopefully we can communicate that to committee. If not we will fundraise and get the funds for Katherine to receive the implant. After we hear from the committee we will move forward with either the surgery or fundraising and then the surgery. I will probably being doing most of the auditory therapy once the implant is activated so anyone with resources involving auditory therapy for multi-disabled children please send that information my way.
I’m looking forward to seeing where this journey will take Katherine. She is the child in my home that I think has the most untapped potential. Katherine is the SCH child that first stole my heart and she has made progress in the past couple of months. It’s slow and hard to see but she is making progress. She is an easy child to overlook and write off but she is so worth it. I love getting to advocate, work, and snuggle with her every day. I feel like a cochlear implant is the next best step for her to unlock the world around her. Please pray for us on Friday morning when we go before the SAHI committee. Getting this funding would mean we would haven’t to wait to do the cochlear implant surgery. If we have to fundraise the surgery will be pushed until we can raise the funds. I know Katherine is worth it, please pray that the committee will see that too!