Today, our blog post is about someone who does not always get a lot of press around here: our Ellie. Not that she would let you forget it if you saw her in person. She pretty much acts as if she is little Miss Thang most of the time, but she definitely has her sweet moments.
Today, Ellie is having surgery, which is a first for her. We've been through multiple surgeries with the boys, but for Ellie, this is new. We've had several talks about what will happen and why she is having the procedure, but it still makes her upset. The boys, who are practically professional patients, talked her through her part in the process:
"They'll give you medicine that makes you tired!"
"The mask smells like strawberries!"
"You'll get to play with an iPad while you're there!"
Wait--what?
The hospital where we have had a number of surgeries does let kids borrow iPads to play games for distraction. So, the first question Ellie had when we got here was, "where is my iPad?" Then we had to explain that it was not hers to keep, it was to borrow, etc. We ended up just watching TV and pretty soon, she was tired from the medicine anyway.
Ellie was born with bilateral microtia and atresia, meaning she does not have external openings in her ears that lead to the eardrums. On the outside, she has small bumps and flaps of skin that resemble earlobes. On the inside, she does not have ear canals or eardrums, but she does have cochleas and the small bones of her middle ear. Since her adoption, she has worn a BAHA, which is a hearing aid that is anchored to her head through a headband. The hearing aid conducts sound through the bone of her skull. Today, she is having surgery to place a port in her skull to attach the BAHA. She will still use it in the same way, but without a headband. And, the sound is much closer to the central nerve in her head that sends sound messages to the brain, so what she is able to hear through the BAHA should be even better than before.
We didn't know what we were getting into when we adopted a child with hearing loss. I know a thing or two about cleft lip and palate and having worked in pediatrics, I have seen a few things. But I was unaware of the extent that hearing loss can have on communication, relationships, and cognitive function. I thought that if Ellie had a hearing aid, it mostly corrected her hearing and she could catch up. That probably makes me sound naive, but I just didn't see a lot of literature about the extent of hearing loss among kids with microtia/atresia in both ears, or many of the other issues present. For instance, Ellie was adopted at 20 months old; before her adoption, she did not have a hearing aid at all and she lived in China, so what language she did hear was Chinese. She got her BAHA 3 weeks after we brought her home, plus she was hearing and learning English, plus she was a toddler who was moved from her home in China to a new place with new sights and smells and two older brothers and a lot of other white people. It was probably confusing for her, to say the least.
So, despite being 5 years old, Ellie's language is delayed and she often doesn't get a lot of what is going on. A person who cannot hear clearly often does miss out on those little things that happen all around them--those things we often take for granted. She not only misses some parts of conversation and pertinent words, but also inflections and humor. She often doesn't understand what we are talking about or she will react in a way that seems inappropriate, but in reality, she doesn't always know because she missed some of the key information.
Today's procedure will not fix everything for Ellie. Because she does not have eardrums, it is unlikely that the doctors could ever create something that would work as well and that would conduct sound in a manner that would allow her to hear within a completely normal range. It is okay. She is a strong girl and she will adjust. She is remarkable in what she has managed to accomplish so far in the short time that she has been with us. I have great hopes for this girl.
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