Update on the boys (and a little venting):

Because I’m ever the advocate, I wanted to share/vent about the difficulties we’ve been having with the boys and their hearing and getting them the support they need.

Where it started:

At the end of January, we received a letter from the school stating that they had done free hearing screenings and our boys didn’t fully pass them. I immediately reached out to our PCP, got them a referral to an ENT, and the appointment happened on February 27th (a month after the letter from the school arrived).

When we got there, I advised the audiologist that our boys may not do well in the sound booth and likely would require sedated ABR testing (auditory brainstem response), which I only knew about because of Tori.

They were impressed that I knew about that 😂

They did the hearing tests, and then notified us that, indeed, they weren’t conclusive AND that they couldn’t do pediatric hearing aids in their office if needed, anyway. 😑

So, they sent out referrals to Penn State Hershey, WellSpan ENT in Lancaster, and CHOP. The first to respond was WellSpan, so we scheduled…for June 12.

Side note: I know everyone is backed up, but being in an area with several major health systems, and given that this is impacting our children’s development and speech, make these delays incredibly frustrating.

June 12th comes, another sound booth hearing test, and what do they suggest?

Sedated ABRs. 😑😑 Just like mama said.

Who can do them? Only one hospital in the area (Hershey). So they send our referrals. Isaiah’s ABR gets scheduled for August 7th (tomorrow). A two month wait. No word on Caleb.

Where we are now:

In the meantime, Wellspan decides Caleb needs ear tubes (which happened last week).
After the tubes were placed last week, I asked the ENT to send another referral for Caleb’s ABR because we hadn’t heard anything.

So imagine my excitement when I get a call yesterday about scheduling Caleb…for an ENT consult and sound booth test. 😑😑

I kindly informed them that he’s had three hearing tests this year and that’s not what he needs. She said she’d get back to me.

Today she called back and said the doctor is insisting on doing the consult/test, so I asked why it was only for him and not Isaiah.

No answer yet. So I called our WellSpan ENT to have them call and make it clear that Caleb just needs the ABR. Even they were confused as to where the wires got crossed.

So here we are, twenty days before school starts, and neither twin will have hearing aids to start the school year off fresh.

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We feel bad for not knowing that our boys had moderate hearing loss for so long (we thought it was selective hearing 😂), but I’m proud of us for not feeling guilty. Instead, I’m playing the role of advocate once again, and finding it more challenging than it ever was for Tori, which is shocking to me (I say me because I’m the one at home all day who gets the pleasure of dealing with it – Brennan would if he were in my shoes, for sure).

Children with special needs, like ours, face such difficulties with getting services and care, and I want that to change. Our boys are so smart, but their hearing difficulties are preventing them from reaching their full potential.

It shouldn’t be this difficult to help children hear properly so they can learn and flourish.