Lots on the agenda with little Miss Natalie. Here are some updates on her hearing loss journey.
A few weeks ago we met with the geneticist to discuss Natalie’s hearing loss. Genetics are sometimes not black and white since that part of science is always evolving. The doctor did a thorough exam on her and could not associate any syndromes physically that would be related to her hearing loss. We went ahead and had her tested (she was brave getting her blood sample taken) for a few things that can be the factor. One of such is kind of common, it is called Connexin 26 gene. You can read about it here. He said it was about a 50/50 chance she may have it. It is a gene mutation that causes hearing loss. If she does have it, it is usually a 25% chance that one of our kids would have it, which may explain why Sophie and Dylan are just fine. We have to wait about another month til we get the results back. There may be something else or we may never know the cause. I am not sure if the rest of us will be tested at some point either... just have to wait on the lab results.
Sunday night, Tim and I are heading up to Chapel Hill for Natalie’s first ENT appointment on Monday morning. We also meet with the audiologist and have another ABR test done which measures exactly how severe her hearing loss is. We are ready to jump into all of this and get going. The doctor we are seeing is supposed to be one of the best in the country with cochlear implants. You can read about him here. The audiologist we are seeing is the director of the UNC pediatric audiology team (read about here) so we are glad to be in good hands.
(Educational Part)
The picture below is an audiogram and we will get very used to them. The vertical column measures decibels and the horizontal measures frequency or pitches. The 0-35 range is normal hearing. You can see that the bigger the number of decibels the more severe you get. The ABR test does not test greater than 80 because it would be too much for the ears to handle. When Natalie was diagnosed in April, she was at least 80 so on the severe/profound line. We don’t know how profound since they don’t test greater than 80 so she could be borderline on the severe side. When hearing aids are placed, they amplify sound and will bring you up about 40 decibels. On the chart you can see different letters in boxes. This is where normal speech is heard and learned. If hearing aids only could bring her to a 40, she would still not be able to hear language which is why she is a strong candidate for cochlear implants. Some kids born with mild hearing loss would do just fine on hearing aids since it would bring them within a normal range for speech and language. The goal is to get her to a hearing level where she can develop normal speech.
I saw the most touching thing on youtube where a baby hears his mothers voice for the first time with cochlear implants. You can watch it here. It made me start wondering, “What are the first words that I want to say to Natalie?” I can’t wait for that day.
On June 30th, we head back up for a hearing aid fitting and her MRI. She has to be sedated 4-6 hours and her MRI is at 1:30, so I am not looking forward to that (and I doubt she is either.) I am not sure when we will have the MRI results, but the MRI is checking : 1.) Does she have the Cochlear nerves and 2.) The anatomy of the inner ear. We are anxious to see how everything turns out. We will continue to have our speech therapist come out weekly, (although she has the month of July off) but I am learning so much each time she comes.
In the meantime, enjoy some recent pics of our dear, sweet, precious, chunky, loveable and squeezable Miss Natalie Paige, who by the way has started to enjoy sucking her thumb.
COMMENTS:
She really is so beautiful. And I agree with Mom- she's starting to look a bit like Dylan.
Friday, June 11, 2010 - 05:14 AM
She is just adorable! And I love that she's sucking her thumb. Emily loves her hands and is often found sucking away on them. It is pretty cute.
Friday, June 11, 2010 - 08:18 PM
She is so pretty. I hope all goes well with her. You are in my prayers!!
Saturday, June 12, 2010 - 03:22 PM
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