Thursday, April 28, 2016

G has a CI

G has a CI and it's important to me that he learns to sign and speak.
Recently his CI was broken and Florida Medicaid no longer has a contract
with Cochlear Americas.  None of the CI companies can work with Florida
Medicaid.  Thank you Governor Scott! 
  So G's CI was not working for 1 month because we hadn't gone to the
ENT for 5 years and to see the Audiologist we needed to have a referral from
the ENT.  It took me 3 weeks to realize that this was the hang up.  So we saw
the ENT and Audiologist on the same day and Geoff got a loaner. 
  When they put the loaner on G he had a reaction much like you may have
seen on video if you've ever watched an activation video.  He started to tear up
and we asked "Can you hear me?"  It looks like someone being overwhelmed
with gratitude and emotion.  In G's case, and I think all cases, he was soon
able to tell us that it was too loud and that he was very uncomfortable.  Having
an electrode fire up your nerves probably feels a bit like having an electrode
firing up your nerve, go figure.  I just thought this was interesting considering
how it is often played like "Oh, you're hearing us and crying!  Hallelujah!"
  Going forward, we were still waiting for Medicaid and the Audiology clinic to
get G's CI fixed.  Another month came and went.  The loaner started to have
similar issues as G's CI, fizzing out mid day. 
  Cochlear allows families to purchase private insurance for the CI.  $500 covers
a onetime repair.  $625 covers 1 year of repairs.  $880 covers 1 year of repairs
and loss.  I am grateful for G's CI.  It provides him with a lot of access to
sound and makes our family life much easier.  We got the $880 policy, $75 a
month is worth it to us.  But I wonder how other families that don't get as good
of benefit from their CI's deal with this issue. 

Saturday, April 16, 2016

relief

G had a great time.  His CI worked.  The other two boy in his troop were in a group together.  G was in a group with 5ish completely new kids.   He finished his blowgun first and decorated it orange and blue.  He won a chocolate easter bunny for singing a song.  He sang the Wacky-acky-acky song he learned a few years ago at cub scout camp.

G is deaf.  His life certainly has some challenges.  I'm so grateful that he can take on hard situations and have a great time.   He is unabashed and enjoys volunteering.  Scouting is a great activity for him to deal with communication and relationship situations that don't just depend on intelligence or athletic skill. 

I was initially dismayed that the two boys in his troop weren't with him but were with each other.  But G did fine.  He didn't have anyone who knows him in past settings to set expectations on his communication, or speak for him.  G can speak for himself, thank you very much!


Friday, April 15, 2016

On a limb

G is going to 11 year old scout camp tomorrow.  He has gone to cub scout camp the last 2 years with no interpreter and done great.  His CI has been acting up lately so I'm hoping he'll be ok.  It's tempting to hover and stay there all day.  But it's actually important for him to have these experiences of independence.  I love this boy so much.  I want him to always be able to have a friend and be a friend.  He has been given challenges and opportunities in life.  I'm so pleased with his ability to be independent and not fearful.  He faces challenges every day and he keeps trying.

Sunday, April 10, 2016

binary

I just told someone that Geoff was not a math genius.  But since he has figured out how to show numbers using his fingers in binary code, I take that back.  The sigh ILY "I love you" is binary for 19.
 Grandma L recently got out this toy.  The kids have seen this picture of aunt L.  G recreated the picture.