Monday, September 27, 2010

Pink Ears!

Well Mallory has received her pink hearing aids, and I must say they are super cute! It is amazing that at 5 1/2 months old she and Kate have such specific personalities...Kate is our tomboy of sorts, she L-O-V-E loves to be played with rough, to be thrown about elicits a huge smile and often lots of giggles. Mallory is more delicate and giggles with "softer" play...she is our princess, and as such the pink aids suit her perfectly.

The brand of hearing aids we got came with a gift for Mallory, a little otter/mouse-like stuffed animal that also has hearing aids. I hadn't thought much about these types of toys, but I do remember Cabbage Patch Kids having glasses; so why not hearing aids? I am now interested in looking for dolls that have the option to buy hearing aids...did you know that Build-a-Bear has this option? Pretty neat stuff.

Monday, September 20th was our genetics appointment for the girls, and although it was a fairly successful appointment I am disappointed to report that it has yielded about 10 additional appointments. We drew labs on Mallory and are looking to see if there is a gene mutation that is the cause of her hearing loss, the labs may take as long as a month to be completed. In the meantime she has a follow-up appointment with ophthalmology and has an appointment with Dermatology in a vascular malformations clinic to evaluate her hemangioma. Not sure I have mentioned before but she has this growth on her left shoulder that has continued to grow and is very vascular-looking. It is now the size of a ping pong ball and is very blue. The geneticist is wanting to get a closer look and make sure it is not growing into her spine and thus eventually effecting her range of motion. Sounds scary when I write it out but we are optimistic that this is nothing to worry about and it is, as our Pediatrician said, a simple hemangioma that will reabsorb on its own and leave no ill effects on Mallory.

We did not get any labs from Kate, and I think this is because there is not a chromosome/gene mutation that is thought to have caused her Microtia (is this right Molly?) The Dr. did mention that she thought Kate had some facial indications of a disorder known under an umbrella term as Ocular Aural Vertebral Spectrum Disorder. She felt that Kate has an assymetric facial composition, although slight, where her left side of her face is smaller. Her jaw, cheek bone and ear look smaller and because of this she is having her eyes checked. She will also be getting a scan of some sort (CT or MRI) of her cervical spine to see if she has any vertebral anomalies.

This is what is scheduled currently and I believe more appointments will be looked into once we get some answers from either the lab work or from radiographic studies. Wishing there was one test that gave us all of the answers.
The girls are developing on track. Kate continues to be very active and vocal, smiling all of the time. Mallory is also talking more and more and her smiles melt you whenever you are blessed to get one.


Little Smiths said...

What a doll!

The Lunds said...

Good summary! But, you forgot to say that the geneticist thought your girls were super cute! (As do I ...)

Marie Hooker said...

You are super mom.

Bets said...

Oh my goodness ... those eyes!
We have a little girl in 3rd grade with hearing aids. They are blue ... and super cute, too! She like to pull her hair back to show them off!