Can you ear me now? Redux

Starting to feel like a Verizon commercial....Can you hear me now?

As with most things, there is a good and a not as good.  So, we'll start with the good.  We had a great trip to Houston for Delaney's ABR testing.  We went down Sunday night and had a fabulous dinner with her Aunt Cande who we haven't been able to see since January because of her free-wheeling world traveling.  I mean, she said it was a "study abroad" program, but I've seen the pictures, and there was WAY too many good times for there to have been real studying going on.  Nonetheless, we are thrilled she's back safe and sound and it was great getting a chance to catch up with her.  If I was a smarter person, I would have a precious picture of Delaney and Cande at dinner to insert at this point, but I failed on that one and just don't have time to photoshop one of them together.  

Monday morning, after some intentional sleep deprivation, per doctor's orders, we arrived at Texas Children's for her testing.  The sweet nurse came in to give her the sedative (FAIL) and had to give her more because she spit most of it out, just as we suspected she might.  But, finally, she went to sleep so they could put all the little electrodes on her and hook her up to machines.  She did have to have oxygen because with her congestion, her level dropped a little lower than what we would like.  So, I know it's kind of sad to see her like this, but since we know she's quite well and was just sleeping, it's somehow easier to take.

She slept well for awhile, NOT the 6 hours they told us she would, but long enough to get what they needed.  She does have an inner ear that responds to bond conducted noise. This is the best news we could have hoped for because it means that at the very least, if we wanted to later, we could get her a bone anchored hearing aid (BAHA) to allow her to have hearing on that side.  At best, if we find through later testing that she has an appropriately developed middle ear, they may be able to restore her hearing completely without hearing aids!  They also confirmed that the right ear is in great shape.  So, fantastic day overall, and we go back yearly for follow-ups unless we notice speech development problems, etc.

Justus' appointment went fine, but it was a lot of information and not the best news about his tumor.  Rather than presenting as a pearl-like mass (which would be the more ideal scenario), his tumor is more of a spread out growth, which makes it a bit more difficult to remove.  It is also wrapped around some bone and very near/on a facial nerve.  So, the goal is to get all of it (because whatever isn't retrieved will continue to grow, necessitating another surgery) with only the bone that must be taken, and not damage facial nerve.  If it cannot all be retrieved without getting too close to the facial nerve, the tumor will stay and all the bones in his ear will come out to allow it room to grow without causing more damage.  Since some bone has to be removed, he will suffer some hearing loss on that side.  How much depends on how much bone has to be removed.  But, as we've learned with Delaney, you only have to have one good ear to hear and his speech should not be affected.  Reconstruction or a hearing aid are options later if we so chose.  The surgery is scheduled for August 22nd, so please say a little prayer.  They will go in from behind his ear, which is just fascinating to me, and exciting that he won't have a visible scar really.  It will be several hours but he should be able to go home that day.  I'll keep everyone posted.  Sorry no picture of Justus from his appointment, but it was just a regular doctor visit.  I guess I could have taken a picture of his blue mouth from his blue lollipop they gave him.  :-)

Thank you all for continued prayers!  They are so very appreciated.