Friday, December 25, 2009

Merry Christmas!


My dearest, darling-est, wonderful friend Leaca heard I was going to send out my Christmas card with no picture, so she was so kind to take this picture for us during church - and then make this uber cute card from it.

If you don't get a card from me then I don't have your address in my computer.  I will post my letter on the blog later, after those of you who get a card read yours.  They're late.  So sorry.  Love you all!

Thursday, December 24, 2009

The update from the audiologist

Brenden, Ethan and I made a trip to Anchorage Monday through Wednesday for some visits to the audiologist.  Brenden boarded the plane, which was about this big:

and loudly asked, "Will there be a movie?"  To tell you how ridiculous that is: there are nine row of seats, each with one seat on either side of the aisle and then a row of three seats in the back of the plane.  It feels a little like what I would expect a military plane would - no frills, just a metal tube with some seats.  The flight is just under 25 minutes.  Brenden then asked, "Well, is there at least FOOD!?"  When I told him no, he wanted to start unpacking his bags and look for something to do.  When I again told him "No," he said, "I have to do NOTHING!?  NOTHING!?"  He didn't do nothing - he talked... LOUDLY the entire flight.  Ethan sat quietly and never made so much as a peep.  Our flight was very bumpy and my rear end left my seat completely at least once.

We arrived at the hotel around 8:30, but the kids were wired and refused to sleep.  Brenden was over on his bed doing some kid of Tai Chi (which he called "exercising") and Ethan was totally enthralled by it and tried to repeat it from our bed.  When I had finally had enough (about 10:30), I told Brenden to lay down and stay still.  He threw himself down on his bed and exclaimed, "But THAT is NOT my DESTINY!"  I eventually had to go over and hold him down and I think I fell asleep before he did.

The next morning we saw our neighbors at breakfast and then headed off to the audiologist in a cab (which meant I was hauling bags, children, and car seats).  Ethan's poor hearing results were a repeat of last time which means it's really as bad as we thought it was.  The bad news is that his hearing aids are already maxed out, so even with them, he is essentially hearing nothing.  We did lots - and lots - of testing to make sure all of his hearing and speech perception are properly documented so we don't end up with another denial.  The audiologist was telling me how impressed she is with Ethan's use of various clues (environmental, syllable, intonation...) in order to know what we are talking about.  He does a great job for as little as he hears.

Brenden was tested and his implants are still pretty good, so they weren't programmed.

We spent a short break back at the hotel where Ethan had a brief nap and then we took another cab to the ENT.  Brenden was documenting how many cabs and shuttles we took.  The ENT said Ethan has some kind of issue with his middle ear and may need a tube put in the right ear when he has the cochlear implant surgery if we can't get his ear drum cleared up.  When I went up in November, the audiologist thought Ethan had an ear infection so we gave him a round of antibiotics, but the ENT said that whatever it is right now has obviously been there a while.  His eardrum is milky white with red around the edges.  He wasn't certain it was an infection, but definitely something wrong.  Ethan is now on a three week round of strong antibiotics in hopes it is clear in time for surgery (whenever that is).  After looking at the CT scan, the doctor diagnosed Ethan with LVAS (or EVA or LVA or VAS or any number of other acronyms), which is the same thing Brenden has.  We pretty much knew he had it, but it was never officially diagnosed.  When I told the audiologist this information the next morning, she was excited because with this diagnosis, it will be easier to authorize surgery.

That night, we swam, watched a movie, and ate popcorn together in bed.  It was a fun, bonding time for us.

Wednesday morning we saw Nolan's gymnastics teacher at breakfast.  Brenden had a brief appointment and then we packed up our stuff and headed back to the airport.  Our flight was not quite as turbulent, but the boys giggled most of the way.  I imagine to them it was better than any roller coaster or bumper cars combined.  Ethan especially just thought that was the most fun thing ever.  We were happy to get home and go pick up Nolan.

Nolan stayed with the Young family Monday evening until Doug was off work and then stayed with the Ley Family Tuesday and Wednesday.  Nolan had a great time playing wii and wandering around taking pictures at the Young's house.  Nolan always has fun with the Leys as well.  They are like his second family here in Alaska.

I know that Nolan felt left out when we left him behind.  He was sad.  I was trying to keep him from thinking about the fact that we were going to a hotel with a pool and restaurant.  I just kept telling him it was going to be doctors, doctors, doctors.  Brenden was the one who had to rub it in that we would be swimming and watching t.v. in a hotel.  Nolan is such a strong little boy though.  Although I could tell that he was bothered by it, he never said anything.  Doug said he noticed it too.  Nolan was certainly excited when we picked him up though.  We are all happy to be home.

Tonight is the big night.  Doug and I were up building Brenden's present last night and need to finish it up tonight.  Nolan's present hasn't even been started.  It might be a long night!  Merry Christmas!

Monday, December 21, 2009

Anchorage - again.

I'm off to Anchorage!  Wish me luck!

Friday, December 18, 2009

School Pictures

I think this was taken back in September, but I never posted it.

I think he's just one of the three cutest things ever.

Last week Nolan asked me to play with him and I told him I needed to make dinner.  He said, "Let the oven make dinner while you come play with me."  Funny how things work out in little minds.

Wednesday, December 16, 2009

Reason for Denial

1. His hearing loss is not significant enough.  (Not true.)

2. There is no proof of auditory delay.  (Not true.)

The audiologist already appealed it, but we realized that we get new insurance in January anyway, so we will have to start over with authorization from them.  We think our current insurance is just trying to put off authorization until we are off of their coverage.  So now everything is pushed back.  We can't start the authorization process again until January, which was when he was supposed to be having surgery, if not the end of December.

The speech therapist did some developmental testing Tuesday.  Ethan was extremely grumpy and uncooperative, so he failed beautifully - thus giving the insurance proof of auditory delay.

I am disappointed with the whole turn of events.  I want everything in the world for him and he is really missing out.  When his hearing aids aren't in, he is desperate for them.  He stops talking and gets into more trouble.  I sometimes wonder if he has a theory that if he can't hear me, I can't hear him.

We head to the audiologist next week - Tuesday and Wednesday.  We will also see the ENT while we are there.  I still can't figure out why we need to see him - other than so that they can take my money - but supposedly it is just to develop a relationship with them - just incase we have any trouble after surgery.  In my mind, having a relationship with an ENT will do us no good if we end up in the ER in Soldtona - 3 hours away.  BUT, I am doing what I'm told, just like my mom taught me.