I'm a bit behind in posting this but, didn't want it to go unmentioned.
** I have purposefully not mentioned a lot about Olivia's microtia on the blog. I aim to protect all of my children's privacy. However, I recently assisted the No Hands But Ours
team with a website revamp in hopes of assisting prospective adoptive parents with navigating the world of special needs. I am quite certain that Olivia would be okay with me sharing her story if it helped to bring even one child home from China.
In mid September we had the opportunity to take Olivia to the Medical University of South Carolina in Charleston. Olivia is in an early Intervention program here in South Carolina which offers amazing services to families who have children with special needs. She is followed by various specialists who see her at little to no cost to our family.
Our Early Interventionist mentioned that she felt we should take advantage of the craniofacial team at MUSC as we haven't felt that Olivia has received consistent care locally. Olivia's diagnosis of microtia and atresia is fairly uncommon. Locally, we have seen various specialists including, audiology, two ENTs, craniofacial surgeons, orthodontists and a speech therapist. Each person seems to have their own idea of what type of care is best to deal with Olivia's unilateral hearing loss and corresponding needs.
Over the past few months we have felt unsettled and wanted to make sure we were doing all we should be for Olivia. So, when Sonita, our Early Interventionist mentioned a trip to MUSC we jumped on it.
Thankfully, due to Nana's new retirement status she was able to stay with the bigs and we took a little trip with Olivia.
Sweet girl was pretty happy in her car seat knowing she was having mommy and daddy time. But, when we arrived at the hotel it was a different story. Poor baby kept saying "Don't leave me". The last time we were alone together in a hotel was in China. Broke.My.Heart.
A dinner out and a special dollar to buy ice cream from the restaurant owner made our girl relax and cheer up.
She couldn't get enough of her daddy's crab soup. Mommy wasn't sharing.
The next morning we woke up bright and early and headed to a full day of appointments. Sweet thing was such a trooper as she went from 8:00 am to 2:00 with no break for lunch or nap.
We had many questions answered. First, audiology does not recommend a hearing device at this time. Although she has profound conductive loss in her right ear her left ear is working perfectly. In addition to this, she is scoring above age level, at the 3.5 year range on language and articulation (thank you Miss Christie). We were told that a BAHA would only possibly help with her sound localization and gravitational insecurity. As the therapist said, it's too expensive of a risk to take as the chance of it helping is minimal.
After the speech and audiology appointments, we headed to see an ENT who specializes in microtia and atresia. He listened to Olivia talk and we expressed some concerns we have with her nasality. He immediately sent her to his VPI clinic where she had another speech evaluation. This time the airflow from her nose vs. mouth was measured and she had a test done where a tube was placed down her nose and throat. The child was a dream. The physicians were certain she was too young to participate in the study but, wanted to try because we had made such a long trip. Olivia cooperated perfectly and never shed a tear. I assure you I would have screamed if someone stuck a camera that far up my nose!!!!
It was discovered that just as we imagined, Olivia has vasopharyngeal insufficiency. This is related to her low tone on her microtia side. Her palate is not contracting as it should. We will begin intense specialized therapy in hopes of strengthening her palate. In 9 months we will return to MUSC and determine if surgical correction is necessary.
We are so thankful for the team of experts at MUSC who helped us learn just a little bit more about how our daughter was "fearfully and wonderfully made".