Wednesday, March 9, 2011

It’s a go.

This afternoon I finalized plans for our trip to Florida to see Dr. Berlin. Dr. Berlin has been the leading researcher in Auditory Neuropathy Dys-syncrony for quite some time now – I guess since he and colleagues discovered and named it. I’ve been in touch with him since very soon after we got Blair’s diagnosis, and he told me today that he is looking forward to seeing her “after all these years”! It really has been almost two years exactly since I first called him. I had no idea he would call me back within an hour of my leaving a message, and after talking with him, I hung up the phone with thankful tears in my eyes. He’s just such a wonderful person. I could not do Dr. Berlin justice by describing him here, but I found this interview with him that I thought was very neat and informative.

016017

Asking me to put her bib on before she eats her ice cream. =)

The plan for Florida is to have another sedated ABR (auditory brainstem response) but in the OR this time. She will also have genetic testing because Dr. Berlin says they have found 9 genes that cause ANSD. If she has the gene, there’s no sense in waiting anymore to do the CI surgery. If she doesn’t, then we know the AN was caused by her troubles at birth. She will also have a speech evaluation. All of this will be done over a couple of days.

007

Blair will be the very first patient of Dr. Berlin’s new Center of Excellence for Auditory Neuropathy. I guess that’s exciting, right? To be honest, all I feel is stress at this point. I just pray that we will leave with some answers, clarity, and peace.

030

The big question is whether or not Blair needs a cochlear implant in order for her to be able to develop speech appropriately and function as a auditory oral individual. CIs have been successful for many AN kids, but with Blair’s amount of hearing (it’s normal with her hearing aids), it’s a tough decision to take that away from her. The surgery would take away her hearing in the ear in which the implant is placed, but she would obviously hear in that ear when wearing the CI processor, which is sort of similar to the behind the ear hearing aids she has, just bigger and without the ear mold part. The objective of doing the surgery would be to allow her access to clearer sounds, whereas right now she might be hearing sounds with static behind them or garbled. The interference could be affecting her ability to hear some sounds and prevent her from reproducing them as speech. It’s a confusing hearing loss that’s hard to understand. She’s talking; she’s just not very clear.

I guess that’s about all I know for now! Your prayers will be much appreciated in this tough time for us as parents.

006crop

12 comments:

jax said...

I'll be praying for y'all! Hope that you get plenty of answers and leave FL with some sense of peace.

Trey said...

Prayers from your cousins down South!

jmluckie said...

Good luck.Praying for the best.

CHERI said...

Definitely will pray. I know that that whatever decisions will be made Blair will grow to adjust and be a happy person. Children are so much more resilient that we adults and they learn to adapt so well at such a young age. Keep us informed. I've been away from blogging for a few weeks so I need to read yours and catch up!

Anonymous said...

You know we are thinking/praying for you all! I can't wait to hear the results of Blair's trip!

And I love that article on Dr. Berlin! He's so funny and BRILLIANT! I'm so thankful that he gives us the time of day too. You'd think he'd be ready to retire and rest by now!

I'm very interested in the genetic side of this. I've just always assumed it was caused by Sully's birth or the medicine he was on after birth.

When are y'all leaving?

-Sarah

Julia said...

prayers prayers prayers for precious Blair and her mommy and daddy! I know everything is going to turn out alright! Good luck and keep us posted.

Suz said...

Prayers coming your way from up north! Glad you found such a great doc to care for your tyke.

Semi-Slacker Mom said...

I'm excited for y'all & will most definately will keep y'all in my prayers.

Lynn said...

I will be praying for God to give you the discernment and wisdom needed to make the best choices for Blair's hearing.

I love the pictures of the baby chicks! I so miss when Dillan was little and I'd buy some for him every year at Easter. I have a certain picture in my mind of him holding a green chick....I think I'll have to dig that one up and post it soon....sweet memories :)

Jen said...

crying...
your know my heart. DEFINITELY praying. SO excited for this next step for you...and just so scared.
xoxo
wish you lived closer!

Jen O'Daniel said...

I'm praying for Blair and the medical group working with her. I know this is hard on a mother's heart, but hang in there - Hopefully this trip will bring some conclusive answers. Thinking of you!

Jeff and Beth said...

I had an aunt who had the surgery for a CI as an adult and it really changed her life. Hopefully things will go well for Blair and you'll have peace.