Incident report!

Little miss is as happy as ever!  We've noticed her responding more to sounds.  I don't know if it is just wishful thinking or if her hearing is truly bouncing back...one article I read about Pendred Syndrome said that after a drastic drop, hearing could return to the "normal" level it was before.  
Ainsley is scheduled for her CT test and ABR (hearing test) on Thursday!   We report to get her ears checked at 11 am to make sure there is no fluid, 12 noon check in for sedation, 1 pm CT scan, and 1:15 pm hearing test.  A nurse from the peds sedation team called me today and walked me through what Ainsley can have the day of the test...nothing to eat after midnight....  I asked twice if this was medically ok and she calmed my fears and said she'll be ok, just really fussy.  Ryan and I will both be with her that morning to keep her pre-occupied before we go into the hospital.  She can have milk until 6:30 am and then 2 oz of juice before 10:30 am.  We will have to pull out all of the stops to keep her preoccupied before her test!
I want to be honest--this week has been rough as Ryan and I have been processing all of this info.  We have thought of every possible scenario, read for hours on end about this syndrome & cochlear implants, talked through our frustration that our baby girl has to go through yet another struggle.  On most days we are in a good place, feeling thankful for the resources and support that is surrounding Ainsley at this time. 
Some of those positive connections...we are having lunch tomorrow with a colleague who has cochlear implants.  She is going to share her experiences and Ryan and I are so thankful we get to get a first hand account of what the process is like.  Another colleague gave me the contact of her sister who has experience with cochlear implants since her daughter needed them.  I am forever grateful for people taking the time to share their experiences, so we can make informed decisions for Ainsley.
I'm also grateful that Ainsley's endro doctor (thyroid) referred her to another endro doctor that specializes in Pendred syndrome!  He said that it would take until summer to get her in for an appointment, his staff called the other day and said they had a cancelation, so Ainsley will be seen by this doctor in April!
I was explaining Ainsley's test on Thursday to a mom of one of Ainsley's classmates and how I wanted the doctors in the otolaryngology clinic to check Ainsley's ears before the test on Thursday to make sure there is no blockage so we get an accurate reading.  They have us scheduled to see the resident on call that day and she said, have them page my husband--he is the fellow on call in that clinic!  I almost started crying because my prayer all along has been for God to provide for my baby girl.  If she does have this hearing loss and this syndrome that I can't fix for her, I at least want people in her life who can provide the BEST care for her.  I'm thankful our mighty God has provided in BIG ways this week!

The incident report....our little miss received her first incident report at school today.  She was playing on the new jungle gym in her room and took a tumble and scratched her nose.  When I went to pick her up today, I stopped by her room to pick up her paperwork before I went to get her in the activity room and read the incident report.  You better believe I ran to the activity room to check on her.  She is fine thankfully, just a scratch.  Ryan assured me it probably won't be her last!

Comments

Carly said…
This comment has been removed by the author.
Carly said…
Thanks for connecting me with your blog! I am sorry it didn't work out to meet yesterday. A quick background - I was born profoundly deaf in both ears and wore hearing aids until 2005. During the summer of that year, my hearing dropped quickly and to a great extent off the charts. That was when I discovered my hearing loss was genetic - Connexin 26.

I decided to get a CI on my left ear in Dec. 2005 (wanted both ears done, but lo' behold, the insurance company didn't see the benefit of two ears having assistance. Seems a no brainer, huh?). Had my right ear done here at UIHC by Dr. Gantz in Feb. 2010.

I know all of this has been hard on you and Ryan. Ainsley will definitely have some challenges in life but she will be such an important person that we need in this world, exactly as she is. You just wait and see...I look forward to following Ainsley's journey and am here anytime you or Ryan need anything.
Anonymous said…
Cheyenne and Ainsley need to meet! Cheyenne took a stumble down the stairs last night and has her chin scrapped. Hopefully when her eye heals we can get together!

Popular Posts