Bei first named this bear Aaron...I don't know why.  However it's latest name is Daddy...again I don't know why, except that they LOVE their daddy very much and they love this bear. 

When I left Minneapolis last week in shock after hearing that Kai Kai Sweetie Pie is severe to profoundly hearing impaired, I repeatedly asked myself the question "Why am I always so shocked and surprised that my medical special needs kids that I adopted and commited to ACTUALLY have medical needs?"  I remember the day that they told me that Bei needed open heart surgery?   What!? Where?! When?!   You mean this child I adopted with a hole in his heart and weighs only 20 lbs at 33 months needs life altering measures.  Wow, I never saw that coming!  I've told you all that denial and avoidance are two of my closest friends.   My friend told me that I'm not about denial but I am an optimist!   I like that!   Honestly at this point, if I take Kai to his next doctors appointment and they tell me that Kai is really a girl.  I won't be the least surprised.  I will say "Of course he is and I will run to Target and buy him a few dresses and put his hair in pigtails.    Seriously, how many more issue's can this kid have?  The good news is that through it all he is one happy little kid!!

So I spent Saturday and Sunday being blissfully ignorant.  I figured they will slap hearing aids on him and we are all good to go, life is easy peasy.   By Sunday night I realized I better start my research and see what the reality of the situation will be going forward for Kai Kai Sweetie Pie.   By the time I got done reading blogs and websites at 2:00 in the morning, I had a stomach ache.   Bye Bye Denial and Avoidance and Hellooooo Reality.   Monday morning I was still sad about what a hard road is ahead of Kai and how much work is ahead of him to learn a language.   However, by Monday evening my sadness had lifted and I was watching Kai like a hawk.  My mothers intution had taken over and he still didn't seem like a child that is severely hearing impaired in one ear and profoundly hearing impaired in the other.   I called my Ear Nose and Throat (ENT) doctor on Tuesday.  He told me that he was surprised by the results of the sedated hearing test and that it was not congruent to what was tested in the office.  He still didn't have the report from the audiologist, but wanted to go through it very thoroughly.    I called him again today to say this diagnosis does not match my kid!   The ENT doctor agrees with me.  Yeah!  He interprets the results as Kai is moderate to severely hearing impaired.  It gives me hope that his learning curve for a language just became a little less steep if he is not profoundly hearing impaired.   He still needs hearing aids.   He still will need speech therapy.  He will still need special services provided at school.  We are hoping to have his hearing aids sometime next week.  I still need to get to the bottom of why these the ENT and the audiologist are reading the results differently and what that means for Kai if anything.  It may be as simple as searching for a new audiologist since she is the one that I am going to have an on-going relationship with.  

UPDATE - The audiologist finally called me backand the bottom line is she said we are probably getting false positives from Kai.   He knows our routine our life etc.  I told her that the ENT didn't agree with the results and she said they probably got false positives when they tested him in the booth the first time.  So I don't know what to think about it all.   I guess it doesn't matter since the treatment is the same regardless if he is moderate severe or severe to profoundly hearing impaired.

THANK YOU to all the people that reached out to me!  Don't stop!  If there are other things that I need to know give me a call.  I've learned that you learn the most from people who have experience with it.  I also have appreciated the words of encouragement and support.

Jeannine - I agree that Nicole #1 is awesome.  I also like Sharon and Joyful Mama/Cedar.  There are alot of very good pictures submitted.   I can't wait until next month!   

1 comment:

nina said...

As he gets older and can tell you more what he can and cannot hear you will find it will be easier to know that the settings are right. I think the important thing right now is to have him hearing, so he can be learning that language!!! You keep being optimistic!!!