Dr. Roberson

So today was the "call" that we've been looking forward to since mid-last week.  After getting some unexpected news about Lucy's right ear.....what had been our plan....well, changed.

We had a conference call with Dr. Roberson, top surgeon in the field of Atresia....basically in the world.  He is also in California but not in LA.  He was so informative and did an excellent job speaking with us regarding what is going on in Lucy's right ear.  He did an amazing job at helping us understand in "normal people talk".  Love him.

What we HAD been told (not by Dr. Roberson...I will not name the surgeon) was that Lucy would definitely get hearing on her right side.....and that she would need reconstructive surgery for the ear drum, ear canal and outer ear.  But that she would hear.  Done.  End of story.  So our plan was to have CAM surgery (Combined Atresia Microtia surgery) in the spring/summer of next year.  (Atresia - inner ear.  Microtia - the outer ear.)

Surgeon's rate the ears on a scale of 1 to 10....based on what they have to work with in the inner ear and how much of a chance the patient would be able to receive hearing.  Surgeon's don't usually touch a patient with a rating of less than an 8. 

What we FOUND OUT last week is that Lucy's right ear is a 4 or 5.  We were heartbroken.  I have to be honest....I had to have a moment or two for my girl.  What we had hoped seemed to be gone.

Please don't get me wrong...we are so blessed to be on this journey with Lucy.  We are so thankful that Lucy is able to wear a BAHA and be able to hear.  We did not know if Lucy would be able to hear anything when she first came home.  God has truly blessed her and us with this BAHA!!! 

What we ALSO found out last week is that Lucy's right ear has Cholesteatoma.  Sort of a skin tumor of such.  This can be easy to deal with....or not.  We still don't know the severity of it and won't until we get an updated CT scan.  I won't go into what this could mean for Lucy....let's just wait and see. 

So the plan for right this minute.....we will get an updated CT scan this week and overnight it out to the surgeon in California.  Once he reads it and compares it to the one from last fall....we will then know a timeline. 

First let me say, that we are on track for the left side surgery.  So we are still a go for the Microtia surgery on Lucy's left ear!  Praise God!  September 27th.....Lucy will have a left ear!

Plan A - as long as the Cholesteatoma has not gotten dramatically worse....we will plan for the CAM surgery (Combined Atresia Microtia surgery) for next spring/summer. 

Plan B - if the Cholesteatoma has progressed agressively....we will look at the CAM surgery in January...at the latest. 

They really don't like to do the surgeries too close together.  They really like the body to have plenty of time to heal.  We obviously are praying that the Cholesteatoma is basically the same.  (or gone! My God still does miracles!)

Regardless of when the surgery happens....there are 3 outcomes.

1 - they go in and are able to build an ear drum and ear canal and Lucy gets some natural hearing.
2 - they go in and are able only build an ear canal to make the ear "safe" due to the Cholesteatoma.
3 - they go in and the Cholesteatoma has done so much damage that they remove the Cholesteatoma and close up the ear.

We literally won't know which one of these is the real outcome until after surgery....next spring/summer or January.

The surgeon said they don't normally operate on an ear that is less than an 8 but with Bilateral Atresia they will go as low as a 5 to try and gain some hearing since the child is deaf without a device.  He said if he is able to get any hearing whatsoever then "hallelujah!"....that way she isn't completely deaf in the water/pool and at bedtime.  Again, praise God!  Hope has been restored!!!

Ok, I know I'm rambling and I'm trying to remember everything....I probably don't even make sense!  I will reread and try and catch all my mistakes!  So bear with me! 

We are asking for specific prayers for Lucy:

1 - that the Cholesteatoma has not changed....or at least not much so we can wait until spring/summer
2 - that her first surgery is complication free!
3 - little to no pain
4 - safe travels
5 - great health for all of us!
6 - smooth transition for the 2 kiddos staying with family here at home
7 - all the funds are met that are needed for her surgeries

We trust God in all of this.  He is in control and to God be all the glory!  Lucy is His creation and we are just trying to follow after His leading.

Love to all of you!  Keep the faith!!!