Tuesday, April 3, 2012

Stop the bus!!

This morning we got the call that Emma's Ultrasound came back N-O-R-M-A-L!!! Yipee!! We were so happy to hear the news that her kidneys are ok.  2 weeks ago we had no worries about those little bean shaped organs but as of last week, it was all my dear husband could think about!!  One thing off the table.

At 3:30 we headed back to U of M for our appointment with the ENT & Audiologist to read the CT Scan & ABR results.  The CT Scan also came back NORMAL!!!  This means there are no deformities in her ears (at least none that they could see on the scan).

Finally, they told us that the ABR hearing test also came back NORMAL!

What...what?!  Back the bus up...can you repeat that?

I had her tell me 5 different ways from Sunday but basically she said -- "yeah, its really good news, it seems she doesn't have sensorineural hearing loss after all. This is really rare, I have never actually seen it happen...we are really sorry but this really is good news!"

Now let me back up for some history...this ABR test actually has some history behind it.  After the diagnosis of severe to profound hearing loss a few weeks back, we asked for the ABR test but were told that it 'was not needed'. They said her hearing loss was so evident in the booth that there really wasn't a need to put Emma under anesthesia just to 'double confirm'.  At the time, I was so overwhelmed I told the audiologist 'ok, if you don't think we need the ABR, then I am good with that'.

Hearing aids were fitted and ordered at that time. I started saving for the payment of the aids (apparently the state of Michigan does not require insurance carriers to 100% cover even basic models).   Over the next few days, we started telling folks about Emma's hearing loss and were connected with one of Lexies' friends mom, who also is an audiologist in town.  This woman told Matt that we needed the ABR and that we should fight for it.  Luckily I am married to an awesome man who is on his game!  He called the audiologist the next morning and said we needed the ABR.  It took 2 weeks to schedule, but we finally got it scheduled last Wednesday, while we were on vacation.  Thank God Matt spoke with this woman and that he pushed for it!!

Anyway, today they proceeded to re-do the behavior hearing test they did a few weeks ago.  They also re-did a few other hearing tests to confirm the ABR test yesterday.  They indicated Emma's hearing loss today measured 'mild' in certain frequencies but not severe to profound like it had a few weeks back. They said mild losses don't require hearing aids.  Confused yet?!  I sure was!!

I asked which test is more accurate - the ABR/OAE or the behavior tests. No clear answer, depends on age, child, circumstances.  I asked about false positives.  I didn't get a straight answer from anyone. Reading between the lines, my take is that behavior tests may not work for our little princess. She just couldn't care less about their toys and was much more interested in playing with stickers & telling me 'DOWN!' (her way of saying, we need to get out of here mom) then responding to auditory stimuli.    I am just floored that they were considering not doing the ABR!! Had they not done it, Emma would have hearing aids today and, apparently, not need them!!

So where are we now?   We are so freaking happy and celebrating this evening. I am not certain we are out of the woods with hearing  for now but I am cautiously optimistic. I will be honest, my mothers instinct says she is alright.  This little 18 mos old girl  - who had been in the US for 2.5 mos - can say 30 words already. She will get her shoes if I ask her to. She will give me a kiss if I ask her to. If Lexie wakes up in the middle of the night crying, Emma hears it and then wakes up also (lovely, right?!).   Again... cautiously optimistic. That said, I am going to be a lot more aggressive going forward when we talk to doctors (which is saying a lot for those of you that know me!!).

For those of you that were praying for Emma - lets just say that there is some power in prayer folks!!   Thank you!!   Matt and I talked and our takeaway in all of this is that we can handle WAY more then we think we can.  We can handle hearing loss...its not the end of the world.  We can do this because we have each other and because we know we are not alone.   I am not sure if the last month was strategically placed in our life or if it was all just a big mishap.  But I am certain of this.. we have learned a lot about ourselves & grown even closer to our precious baby at the same time.


sarahkate60120 said...

Congrats! That is great news!

Julie Anne

sarahkate60120 said...

Oh, and when Anna saw a picture of Emma, she asked if that was her as a baby. So she thinks they look alike as well.

Julie Anne

Kam said...

Wowza!!! Praise the Lord!! You know, I was telling my bestie about this a few days ago and she said that the same thing happened to their son. I didn't share it with you because I just thought it was a fluke for them...not in a flippant way. But didn't want to seem flippant toward you and sweet Emma.

Anyway, I'm soooo happy for you all. And you're right, IF something comes up with her hearing, you know you can handle it. There is a lot of peace in that!

WooHoo!!!! God is good!

Nancy Kuemin said...

Great news! And yes, you guys could handle anything. :-)

Martha B. said...

Wonderful, fabulous news!!!!!

Karen said...

Terrific News!!! Congratulations!!!

Mortensen Family said...

Wow! What a surprising praise! God is so good to grant us beyond what we could ever ask or think.

Pam said...

Thank God! I am so happy for you and Emma!

a blog full of weldons. said...

praise the Lord! this is awesome!!!

Stephanie said...

That is just craziness! I can't believe you were SO close to having her have hearing aides when it wasn't needed.
It's not a good feeling to know you have to question medical authority, but I'm so glad you did! Praise the Lord!!