If you look at her, you'd never know what she's been through.
And I am so thankful.
But, she had a couple "little" appointments today...and if you've followed our blog for long, you may just know that even a little something may feel like a lot something right now.
So, in a nutshell, a few weeks before we left for Cincinnati, we had Raimey evaluated for speech services.
She struggles with enunciation and not a lot of people
(other than me, most of the time) understand her.
She's been home a year so we felt it was time.
In getting the speech evaluation, Willamette Educational Service District also ran some hearing tests.
The first one was bad....but we thought maybe she just didn't follow or understand the instructions very well.
So, then came the second one. There was no doubt she focused and followed instructions perfectly.
BUT, she failed miserably. Her diagnosis is "profound hearing loss" in her right ear.
Being the forever optimist, I felt like we could just "fix" this with ear tubes. This worked for Darren years ago, why wouldn't it be the perfect fix for Raimey, too?
With a referral to an ENT at Doernbecher, Raimey and her entourage (Daddy, Grammie and Papa) went to her appointment today.
The answers weren't what I hoped for.
There is a structural defect in the ear, which includes the bone, meaning ear tubes are not an option.
She will need a hearing aid (there are a couple different options), and when she turns 5 year old, we'll be able to consider a BAHA You can read more about that here:
What is a Baha?
The Baha is a surgically implantable system for treatment of hearing loss that works through direct bone conduction. It has been used since 1977, and was cleared by the FDA in 1996 as a treatment for conductive and mixed hearing losses in the United States. In 2002, the FDA approved its use for the treatment of unilateral sensorineural hearing loss.
Baha is used to help people with chronic ear infections, congenital external auditory canal atresia and single sided deafness who cannot benefit from conventional hearing aids. The system is surgically implanted and allows sound to be conducted through the bone rather than via the middle ear - a process known as direct bone conduction.
How does a Baha work?
The Baha consists of three parts: a titanium implant, an external abutment, and a sound processor. The system works by enhancing natural bone transmission as a pathway for sound to travel to the inner ear, bypassing the external auditory canal and middle ear. The titanium implant is placed during a short surgical procedure and over time naturally integrates with the skull bone. For hearing, the sound processor transmits sound vibrations through the external abutment to the titanium implant. The vibrating implant sets up vibrations within the skull and inner ear that finally stimulate the nerve fibers of the inner ear, allowing hearing.
Who is a Candidate for the Baha System?
The Baha is used to rehabilitate people with conductive and mixed loss hearing impairment. This includes people with chronic infection of the ear canal, people with absence of or a very narrow ear canal as a result of a congenital ear malformation, infection, or surgery, and people with a single sided hearing loss as a result of surgery for a vestibular schwannoma (a tumor of the balance and
hearing nerves).
Oh wow... you've all been through so much in a year (it's been a whole year already?!) Praying for GRACE and for resolve to all of your sweet girl's medical issues. I just keep asking myself, "what amazing things does the Lord have in store for this mighty little girl?" The strength of spirit that will be produced in her (and you) through all of these challenges will be beyond our imagination! That's looking to the future - for now, I pray for tremendous grace and strength for all of you.
ReplyDeleteHugs - so interesting do you remeber the little boy who was adopted at the same time as Fei & Raimey - same unexpected diagnosis (he also was a heart baby). I'll look for the blog post and IM it to you
ReplyDeleteJust think about how well she is going to be able to speak once she can hear better! One more step! She is so lucky to have such a wonderful mom looking out for her. Praying you have no more surprises.
ReplyDeleteSo much to take in for your sweet girl. If you ever want to speak to another parent, drop me an email. My best friend's little one (now 8, adopted at 2) had a baha put in a couple of years ago. Hugs,michele
ReplyDelete