We had our first visit to the Pediatric Audiologist yesterday. Becky is our audiologist and I really love her! I think she will be a good fit for our family and she is so personable and I really need that right now. We will be seeing quite a bit of her this first year of Natalie’s life.
We went over all Natalie’s history and background of everything leading up to her diagnosis. Becky is so compassionate about everything and it is hard having to re-tell everything that we know. “No, we don’t have any hearing loss in our family we know of. No medications taken during pregnancy that could affect her hearing loss. No traumatic delivery.” It is just plain and simple that she doesn’t hear.
Our first step was to get fitted for hearing aids. I guess they are pretty pricey ($2600-$6000) for a pair! She was going to get in touch with our insurance to see what they cover. Tim had called the other day and I think our coverage is pretty good, so we will keep our fingers crossed. There are 2 pieces for the hearing aid. The outside piece is actually the hearing aid and the inside is the mold that holds it in place. They put this silly putty type substance into her ears that harden to form a mold for the inner piece. We can pick any color we want for the hearing aid as well as the mold. We can even mix colors together for the mold, so Natalie will be sporting some ear bling soon. Every few months we will get a new mold made for the ear as her ears will be changing as she gets bigger.
We are not expecting her to hear anything with the hearing aids, but are required to use them until implantation. Becky said any information that gets into the cochlea is good, so maybe she will hear something. Natalie will be tested periodically to see if she is hearing anything at all but based on her “profound” hearing loss diagnoses, external amplification, or hearing aids will not really allow her to hear because of how severe she is.
Becky went over a chart with me that measures hearing loss and explained that as well. One side of the chart is decibels and the top is pitches, ranging from low to high sounds. There is a line on the chart where language and sounds are heard and our goal is to get Natalie above that line.
Becky will arrange everything with us as far as ordering hearing aids, testing her hearing and if she gets the implants, then we will see her a ton after that. She is going to try and push for 9 months for the first implant (assuming the MRI is conclusive that we can do the implants) which would put that in December. After the surgery, you have to wait about 3-4 weeks before you get turned on. She said that appointment is the best and to bring family, video camera, etc. to record it. I have watched some videos on youtube and it has been so emotional for me to watch as these young children or adults hear for the first time. I can’t imagine what that day will be like to have a sound heard and for Natalie to turn her head towards it! It will be a day of happy tears. I am so amazed at the progress they have made in hearing and very grateful in the medical world for all the technology that is available now.
Becky also recommended getting Natalie’s vision checked and we have a pediatric opthalmology appointment set up for the end of June. Since she has lost one sense, the rest of the senses try to make up for that, so her vision is her biggest thing right now and we just want to make sure nothing is wrong there.
It was suggested that we also get genetically tested which we will do. The geneticist is booked 6 months out, so will just get an appointment since we are in no rush for that.
In the meantime, we will start speech therapy soon with a therapist that is known to “teach a rock to talk.” There are also several other support groups that will get involved with which I am looking forward to. In about 2 weeks, Natalie will probably get her hearing aids and we will be underway in this long journey to try and get her to hear.
Although I am deeply saddened by all that has happened in this small amount of time (not even 2 weeks) I feel like things are falling into place like they should be. It has been so much information in that time frame it kind of overloads the system. We are in good hands with good doctors, good support from friends and family and Natalie is still as cute as ever!
I am so glad you are updating everyone on this often. I keep wondering and hoping all is going well. I hope her eye tests will be good. I think that will be awesome to see her reaction at about 12 months with the implants. I am glad you have an awesome audiologist. You are being so awesome through this hard trial. I hope you can feel the love everyone has for you
Friday, May 7, 2010 - 06:42 PM
I'm glad everything went well. I am looking forward to seeing pictures of when Natalie hears for the first time. I'll bet that will be amazing.
Friday, May 7, 2010 - 08:13 PM
We know first hand how hard it is to have a child in need. I totally agree with trying to keep life normal for the other children. We wish you the best in the long journey.
Saturday, May 8, 2010 - 12:30 AM
PS from Adrian and Michelle Butler
Saturday, May 8, 2010 - 12:30 AM
Melissa -
I'm so glad you guys found a good doctor to look over your sweet little girl. Knowing you, I can tell you that Natalie will have the best support any child could ask because she was born in one of the best families I know. You are a great mother, and with God's help, I know everything will be fine. She is a lovely little girl, and I know she will be very happy with all of you, such a loving family. Happy mother's day Mel, and God bless you and all your little ones.
I'm so glad you guys found a good doctor to look over your sweet little girl. Knowing you, I can tell you that Natalie will have the best support any child could ask because she was born in one of the best families I know. You are a great mother, and with God's help, I know everything will be fine. She is a lovely little girl, and I know she will be very happy with all of you, such a loving family. Happy mother's day Mel, and God bless you and all your little ones.
Saturday, May 8, 2010 - 05:37 PM
Thanks for all the updates. You guys are certainly in our prayers. You are such a fabulous family! You guys are lucky to have Natalie and she is lucky to have you!!!
Monday, May 10, 2010 - 03:05 PM
You sound like a pro already on the knowledge you have obtained. You have accomplished a lot in a short amount of time! Proud of ya!
Wednesday, May 19, 2010 - 09:24 PM
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