We finally got a call from the genetics clinic regarding Harper's Pendred Syndrome test. The test came back as normal. However, the counselor told me that this doesn't mean that Harper doesn't have Pendred Syndrome; it just means that this test came back negative. She has been in contact with Dr. Richard Smith at the University of Iowa which is always ranked nationally in the top 3 in otolaryngology. He said that in the next 1-2 years that there will be several more tests available that may be more conclusive targeting different chromosomes. The counselor told me that as of now Harper's diagnosis is still large vestibular aqueducts with hearing loss.
Harper LOVES music. In the last couple of weeks, she has really started to pick up on songs. Of course, she likes some more than others. Here is a rundown of what Harper is singing these days:
Wheels on the Bus---She does some of the motions (wipers) but only sings "all through" which sounds like ahhh foo. "The wheels on the bus go round and round...." Then I point to her and she says, "ahhhh foo" and I finish "the town"!
Ants Go Marching--She claps, stomps around, and says the "Boom boom boom boom" part. It is absolutely precious!
The Clean-Up Song--She loves this and sings it ALL the time. She'll just be playing or sitting in her car seat singing "Up, up, up up". Maybe this is a sign that she's going to be mama's helper!
The past couple of weeks I have wondered if Harper has already entered the "terrible twos". Harper has done a great job wearing her hearing aids---until recently. Now, if I tell her "no", do something she doesn't like, or try to challenge her while doing her speech therapy, she will pull both of her hearing aids out! She is basically saying, "I'll show you!" She realizes that this is one way that she can exert her independence and have control of the situation. In addition Harper has become increasingly impatient. For example, she wants her breakfast IMMEDIATELY after the microwave beeps. If there is a cartoon on tv/dvd player that she doesn't like, she'll point and scream at it until we change it to one she does like. I have been worrying if this is "normal" behavior for a fifteen month old child or if this is related to her hearing loss and a sign of frustration. I had a long talk with her speech therapist today who assured me that although it is a little early, Harper's behavior is perfectly normal and very common with hearing impaired children. Thankfully, she gave me some tips to deal with Harper's new sassy attitude, but also warned that it will get worse before it will get better. I'm going to have my hands full!