Wednesday, April 08, 2015

Rainbow Ears and Microphones

I have given little snippets on Instagram but I wanted to give an update to Harper's hearing loss journey on here.  Partly because I want to look back one day and I want Harper to look back one day and see how far she has come.  I can already look back and be encouraged at how far she has come and see how my worries are so often for nothing.  

I also want to encourage other moms on this journey and be a source hopefully of comfort if we are at all ahead of you on this road.  There is nothing I love more than hearing from moms who have recently diagnosed children with hearing loss and being able to encourage them!  It gives a lot of purpose to where we are! 

Harper loves being able to pick out the ear mold colors.  These are the parts that go in her ear and show the most.  Her new hearing aids that go behind her ears are purple with pink tubing.  We get new molds made probably every 4-6 months.  She has been hoping for Rainbow ear molds for a while but I was worried there wouldn't be that option.  Our audiologist was able to give us that option and Harper could pick four colors.  So pink, yellow, purple and red it was! And we love how they turned out! We think they look like cotton candy!

Yesterday was kind of a roller coaster day with hearing loss.  Harper was approved with our school system to get an FM system.  This gives the teacher a microphone to wear that feeds directly into Harper's hearing aids.  Harper only understands about 45% of what she hears and she has been telling us lately she really can't hear her teacher.  So for the school to help her get her teacher's voice directly to her ear is SUCH a gift.  And it's NOT cheap!

For this to work - she has to have attachments that go onto her hearing aids.  So yesterday we went to visit a local audiologist.  We saw this same audiologist who works for Arkansas Children's locally a couple of weeks ago.  What I didn't share at the time is that when we went to Little Rock about a month ago, her hearing was a little worse but it was in an ear that had had a horrible ear infection and had been draining for a month.  So we didn't think it had really changed.  But when we tested again with the audiologist here to make adjustments to her new hearing aids, she determined she had actually lost more hearing because her ears by then were clear.  Even though we know this is our reality and we have accepted it, somehow hearing it from a second audiologist took my breath away and made my heart sink.

So we went back yesterday and she added the parts to Harper's hearing aids and programmed them for the FM system.  This adds quite a bit of length to Harper's hearing aids and suddenly I looked at her and her lip was quivering and her face was turning red and she just started crying.  She hated the way they felt.  They are heavier and longer and I completely understand.  And it broke my heart.

I just had to hug her and tell her I know it didn't feel good but eventually like a new pair of shoes she would break them in and it would be better and she would just hear at school so much better.  This is the first time she has ever cried over her hearing aids and I HATED it.

But the good news is we got her report card last night and met with her teacher and she was is doing amazing.  She is reading right where she should to go to first grade.  Knowing how much harder she has to work than the other kids, I'm just so proud of her.  I couldn't help but fight back tears.  Her teacher also talked about how kind she was and I was so proud.

Harper and Hollis have become obsessed with watching reruns of "Little House on the Prairie" and we have recently been watching where Mary went blind and then became a blind teacher.  Harper is so interested in that and it has helped me have discussions with her about how Mary could do anything and didn't let being blind stop her and it was the same with her hearing.

We are just attempting to cheer Harper on and rejoice in all of our blessings and teaching her to find joy and not to let anything hinder her from what she wants to do.  She is an amazing girl and I'm so thankful she's mine!

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