Today at Duke we found out that we are about to enter even more unfamiliar territory with Cameron. She went in for a more specialized test for her hearing...it wasn't successful so they redid the original hearing screen - she failed again in both ears. So, this time she had more diagnostic tests done. The diagnostician found that Cameron has moderate to moderate/severe hearing loss in her right ear and severe/profound loss in her left ear. We asked if there was any way of knowing the cause and she said no. This was her first diagnostic test, however. We will go back for another test in three weeks. On that same day we will meet with an ENT, who will determine if there isn't a blockage of any sort that could be the cause...however, after the tests today, the diagnostician said that she did not believe that it was. She believes that this is pretty permanent hearing loss and doesn't expect for the results to change much. On that same day, Cameron will have molds taken of her ears to be fitted for hearing aids. We will go back a few weeks later to learn how to use the hearing aids. We will begin to work closely with a speech and hearing therapist to learn how we can best serve Cameron.
The audiologist said that she has a very positive outlook for Cameron right now because her hearing loss has been diagnosed so early and that with therapies and hearing aides that she hopes that Cameron will be able to achieve normal communication skills. Seth has been so amazing and positive through all of this - the perfect husband. Today he said, "You know why I have always liked things like x-men and stuff? Well, it is because they were all unique because of their special powers. That's kind of how our family is." I almost started crying because I thought that it was an amazing way to think about all of this. My prayer is that the hearing aids would be an effective tool for Cameron to be able to hear and that Seth and I would be able to learn how to make our family and our home a supportive environment to nurture Cameron in the skills that she needs to acquire.
As a precaution, Reagan has to go back in for additional hearing tests - since the girls are identical but they do not expect to see much right now. They will just do what is called an OAE (I have no idea what that means) and if she passes, she will not have to have any additional tests.
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Praying for you and grateful that they are dealing with things so early.
ReplyDeleteClaudia
I am amazed...
ReplyDelete-That 2 young adults with a one year old would be so happy about having twins!
-That (25weeks)+(4days)-divided by-2=HOPE
-That big faith can come from such small things
-That a pacifier can be almost as big as the child
-That big words like 'NICU', 'desats', 'reflux', and 'bradys' can be used to describe kids so pink and cuddly.
-That dad knows girls have 'super powers'.
-That 2 big people and 3 little people can be so used by God and bring so much joy.
You guys are so amazing! Your positive attitude and strength through all of your trials is truly a testimony to everyone. Your girls are very blessed to have two great parents like you :)! We are keeping you all in our prayers through all the days to come!
ReplyDeleteI keep up with you through D. as well as your blog. My thoughts and prayers continue for you, Seth. Aubrey, Reagan and Cameron. So thankful Drs. have capability of finding hearing loss so early and advancements that have been made. My prayers continue for your special family.
ReplyDeleteWe already started learning a few words in sign language last night!!! Thanks to Jane for sending the link we decided we would learn a little at a time of what we could. Either way if we need it or not it will be great for us to learn. Call us if you need anything!
ReplyDeleteI am a mom of a deaf daughter. We too found out early. You will be amazed of the blessing you will receive! If you are learning sign language try this site, it has alot of words with video demonstrations.
ReplyDeletecommtechlab.msu.edu/sites/aslweb/browser.htm
Big Hello, My name is Marilyn, mother of 19 month old twin girls, Clinical Social Worker for the Deaf, and strong advocate in the Deaf-Blind community nationwide. We have a mutual friend who told me about your story and I hope I can help in ANY way! First, soooo excited for you in this wonderful adventure of having twin girls, they are such a blast! LOVE your pix, wow so adorable. My husbands parents are Deaf, his mother is Deaf-Blind and niece (out of 5 kids) is also Deaf. I have been using sign language since I was 5 years old myself b/c I have a Deaf GodParent. Anyhow, Jeff and I have been signing with our girls since they came home from the hospital and boy o boy they are not only chatty but sign up to 70 words and 3 word phrases. They started expressing their wants/needs in sign language at 5 months. The girls had several tests done over b/c of their history of deafness in the family. The OAE test is another type of hearing evaluation done on newborns to determine if they have a hearing loss. Any premeies are recommended for re-test over and over until they are about 3 years of age, so don't worry if you have to go back several times. BUT I DOOOO encourage you to work on learning Sign Language and give BOTH of your girls this option of being able to express themselves to you through this fantastic mode of communication b/c not only will it help Cameron when the hearing aids are off but it will also bring your entire family CLOSE with eye contact and a strong bond through communication and more..... I can babble forever about this, especially since my undergrad was in Psych and I did several research studies on the Child Cognitive stage Developments....Doctors will PUSH hearing aides and Cochlear Implants all the way but just keep in mind to teach your child TOTAL COMMUNICATION b/c you never know when the batteries go out what can happen to a child with no other option of communication besides auditory receptive skills. PLUS keep in mind that your girls will also develop their OWN communication too...I NEED AN INTERPRETER to tell me what my girls are saying half the time...haha!!
ReplyDeleteSOOO many options are available today and TONS of support!! YOU have such a STRONG family and obviously wonderful husband...you will all be just fine!! GOD wouldn't give you this if he didn't think you couldn't handle it!!
Great blog! I hope you'll consider adding it to the aggregator at Deaf Village (www.deafvillage.com) -- we'd love to have you as part of our community!
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