Wednesday, September 23, 2015

Special Ears Part Two

Today marks one week since we found out our little twinnies need hearing aids.  I'm happy to say lots of progress has been made in getting their hearing aids and appropiate therapy to help them talk. I'm going to be brutally honest though with typing up this post.  Maybe it will help someone else. One thing I discovered in this journey to new ears is that it's an expensive indevor. There were a murad of emotions this last week but all of that was clouded by the cost factor.  I've also discovered that either insurance doesn't cover it at all or they pay very little. Unfortunately living in Texas didn't let us use TEFRA because it isn't available. All we have is TEDHI which is our states resource to help facility's record when children do have hearing loss OR identify risks so children can be tested sooner or monitored for hearing loss. Through TEDHI I discovered that our twins had some risks the hospital never informed us of. If we had known we would have had them tested sooner and they could have had the aids this whole time.  The good news is the director of TEDHI was able to contact our delivering hospital and give them proper information so maybe another family can have their child tested sooner and know that risks that are possible. I have to give a huge thanks to Doug Dittfurth because he was caring and very imformative  TEDHI also made a suggestion to call ECI and the school district. We have been working with ECI since the beginning of August and they have made contact with the school districts audiology department to get additional audiology help. After discovering all that information we needed to start the process of getting the aids. Thankfully our insurance covers a little but do you have any idea what ONE hearing aid cost (and this is for one without a ton of bells and whistles)? It's $1500 an EAR and in our case times FOUR! Friends that is $6000. We were so shocked!!! I share this so if you are reading this and your child needs an aid you aren't shell shocked when the doctors office tells you this. To top it all off our Audiologist doesn't file with insurance. We discussed going with an in network audiologist but we trust this team because they put in my MIL's cochlear implant and they work with top products. My MIL bought an aid one time from another facility that gave her fits. She moved to this facility and they couldn't even find the aid she was sold. It was a $7000 piece of junk! In this case it's so critical for the twins to talk and not have any further delays. So we decided you get what you pay for sometimes so we are staying and will file ourselves. Thankfully we were able to order their aids and they should be ready by their October post opt visit. Their aids will be by Phonak and are the sky Q. We were able to order them in colors (to identify easily with twins) as well as the ear insert mold will be specific colors. I'm just ready for all the logistics to be done so we can focus on the true matter at heart... My twins being able to hear clearly and hear our voices. 

This last week we tried to find the silver linings and focus on those...
They CAN hear it's just muffled 
They are here and we get to love on them every moment of every day.. I read a Facebook wall with a mother who delivered a still born baby and that puts everything into prospective. 
We have the resources to help them hear and learn
We have an amazing God who will take care of our needs as long as we have faith 

Well that is an update. If you have time say a little prayer as Brennen has thumb surgery on Oct 2nd. 

Here are their aids. 

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