Daphne update

So it looks like over the next couple months Daphne will become best friends with a specialist for each major organ system in her body. We've posted that she has several appointments coming up and many people have asked if Daphne is okay or what is wrong with her. The answer is that we don't know exactly.

Here's what we know:

• Daphne failed her newborn hearing test twice
• Daphne has abnormally small ear canals, which are closed right now
• Daphne has Congenital Vertical Talus, a rare foot deformity that causes her feet to flip up to her shins. 

Here's what we don't know:

• whether she is actually deaf or has damage to her inner ear
• the extent of the canal closure 
• What caused the foot deformity
• If there is a connection between her ears and her feet

Here's what we've done so far:

•  seen a ENT (clipped her frenulum and first noticed her small ear canals)
• seen a neuro-otologist who decided she needs to have more hearing tests and investigation into her ears. 
• seen an orthopedic surgeon who diagnosed her CVT and has started casting her feet to stretch out the muscles and tendons to prepare for surgery. She's had two castings, she will have four more before surgery. 
• blood panel and EEG

Here's what is coming up:

• EKG and Echo, third-sixth leg castings, and appointment with the GI (all 1/3)
• appointment with Neuro on 1/6 to look at EEG
• MRI on 1/7 (she has to be put under)
• appointment with cardio on 1/16 to look at Echo and EKG
• ear surgery on 1/23 to determine the full extent of her ear condition. If the tests show that she can hear but the canal is closed, they will implant a bone conduction hearing aid. They will wait on reconstructing the ear canal. If she can't hear at all then we look into other options such as cochlear implant. We will know much more about her ears after the 23rd.

here's what the hearing aid looks like on an infant

• appointment with opthamology to make sure her eyes are working properly since that is the sense she relies on most. 
• foot surgery to repair the talus followed by braces until 2-4 years old. 
• genetic testing to learn more about the possible causes for the ears and feet deformity and determine if there is a connection. 

We have a lot of friends on facebook and family who have been wondering what's going on. We wrote this blog to help answer questions we've been getting and to help everyone understand is happening. We will keep you updated as we go and appreciate your prayers and support.