Thursday, July 16, 2009

One Proud Mommy

Yesterday Harper's speech therapist wanted to try a new game. She thought that Harper would be too young to catch on, but Harper proved her wrong!
Susan lined up three toys (a monkey, car, and airplane) and told Harper to get the monkey ooo ooo ooo eee eee eee and throw it in the basket. SHE DID along with the car, airplane, horse, bus, dog, and cat!!! The first round she was using the object's name along with the "learning to listen" sound. She did so well that she played the next game only with the object's name. She only missed one!!!
After only four months wearing her aids, she is listening and learning way more than I thought. I am so proud of my baby girl!!!

Tuesday, July 7, 2009

Harper's First Birthday

On May 16 we celebrated Harper's first birthday. This year has FLOWN by!

We had a small party at home, but Harper had a blast! She really dug into her cake. We even had to clean it out of her nose! Notice how well she is doing with her hearing aids. The majority of the time she wears this headband instead of the hat. I bought her these cute headbands at Kids Unlimited in Cullman when she was younger and didn't have enough hair to wear a bow. I had no idea how handy they actually would be!
She got WAY too many toys, but I have to say she plays with it all. She especially loves this baby doll that she puts into the recliner and says, "Rock, rock". Luke and I got her a pink electric car. When she's old enough the stick comes out of the back and she can make it go by pressing a button on the steering wheel. She loves it!

Friday, July 3, 2009

A Start in the Right Direction

I finally talked to Dr. Robin, Harper's geneticist, concerning the CT scan results. He said that it looks like she has enlarged vestibular aqueducts. Here's a snippet I found from

Research suggests that most children with enlarged vestibular aqueducts (EVA) will develop some degree of hearing loss. Scientists also are finding that five to 15 percent of children with sensorineural hearing loss, or hearing loss caused by damage to sensory cells inside the cochlea, have EVA. However, scientists do not think that EVA causes hearing loss. Instead, scientists regard EVA as an important clue about hearing loss and its possible causes. This information helps physicians talk with families about how their child's hearing loss may change over time.
The presence of EVA can be a symptom of a genetic disorder called Pendred syndrome, a cause of childhood hearing loss. According to a study by the National Institute on Deafness and Other Communication Disorders (NIDCD), approximately one-third of individuals with EVA and hearing loss have Pendred syndrome. With Pendred syndrome, the hearing loss is progressive, which means that a child will have less hearing over time. Some children may become totally deaf.
In addition to its association with hearing loss, EVA may also be linked with balance symptoms in a small percentage of people. However, the brain is very good at making up for a weak vestibular system, and most children and adults with EVA do not have a problem with their balance or have difficulty doing routine tasks.
This isn't great news but it isn't horrible news either. There are a number of syndromes that have much worse effects than Pendred (i.e. blindness, heart defects, etc.) I am very encouraged that the doctors may finally be heading in the right direction. Dr. Robin is consulting with several other doctors about the test results. He said that the genetic counselor would get back in touch with me soon.