Yesterday's appointment at Hopkins went well, and I didn't have an anxiety attack or puke all over the waiting room from nervous tummy either. The most traumatic part of the day was that Christian didn't get an afternoon nap...at all. Being the nap nazi that I am, that's a very rare occurance!
Our appointment was the official consult regarding the Cochlear Implant candidacy process and program at Johns Hopkins. We met with one of the top CI audis, who actually wrote the chapter on CIs in Choices in Deafness (it's like our What to Expect When You Have a Deaf Kid). We were told prior to the appointment that she was going to do some audiograms on him, but that didn't end up happening. She gave us about an hour long consult about the CI itselt, surgery, expectations, and rehab. We also discussed timing and that they will do the surgery before he is 18 months old (so in the next 5 months).
We ended up leaving the consult with 6 appointments scheduled all between March 13th and April 3rd. AND ALL UP IN BALTIMORE. He'll have a CT scan, a SLP consult, a meeting with a CI surgeon and ENT to discuss the CT scan, audiological testing, auditory skills assessment, and a pyschological eval for us.
Basically, we still don't know if he's a candidate or not, but we're on the road to that answer, and we're speeding along. We'll be busy shuttling back and forth to Baltimore, researching CI companies, talking with families that decided to (and to those who did not decide) to implant, and just taking this whole process in.
On a funny side note, we did end up meeting the secretary that I spoke with everyday for 45 days straight trying to schedule Christian's first ABR. As most parents of D/HOH kids in the DC area know, these ABRs have long wait lists, and it's just flat out impossible to get an expedited appointment. So, I did what any rational proactive parent would do: I called everyday, and even used fake names to get through to her. I always knew that she thought I was a nut, but she confirmed it in person to me. In fact, when I spelled out my last name to her, she looked up with a shocked and perplexed look and said "I know you. You are that CRAZY Mom who called everyday. You're SO nice in person. I didn't think you would look like that all. You look like a little BARBIE DOLL".
Yeah, I think it's safe to say that Barbie didn't have to deal with half the sh*t that I have had to deal with this past year.
7 comments:
Oh I love that last line!
Oh I love that last line!
Driving from DC to Balt everyday isn't always THAT bad! Thank God we live in an area full of such excellent medical expertise.
I posted on here a while back after having found your site. I am the mom to Jack, a 'hoh' 5-year old, Nick, a "normal" hearing 3-year old and Luke, who just turned one on Feb 13, who seems to have the same type of hearing loss that Christian has. Because we had been through life with one hearing impaired child, we easily navigated the system with Luke and even had hearing aids for him at 1 month! We have traveled down the cochlear implant road and are scheduled to have Luke's surgery at St. Louis Children's Hospital on March 26!
Love your site!!!
You GO BARBIE!!! still rotfl, Jodi
I am in tears.
Everyone should have a Barbie for their mom. EVERYONE.
Go you. GO YOU.
In Real Life,
Kelli
you gotta love Lola!
:),
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