Today is the first anniversary of Riley going bilateral. We sent Dr. Woolley a photo and note thanking him for helping her hear. He sent a nice one back. I also sent a card to Riley at school to mark the day.
I can’t believe it’s already been a year. The left CI has made such a difference in her speech recognition and expressive language skills. Yes, we still have work to do, but she catches on so much faster now. Why, it’s like having two ears! (almost)
And even though you’ve probably seen these photos before, I’m posting them again. 🙂
Leaving for the hotel the day before surgery
Family Portrait while waiting to go to OR
Just after surgery: I want a drink
Family Portrait after surgery
Our sleepy girl
Comforted by her Disney Princesses
“I’m going home, back to the place where I belong …”
At last, home in the big bed
We have a photo where I’m holding a days old Riley like this; she wanted to re-enact it, so we did.
Artwork while in recovery
My folks brought her the Barbie Big Wheel that was supposed to be a Christmas present, but because there was trouble putting it together it was delayed until now. 🙂
Taking a break from cruising on her Big Wheel in her Dorothy the Dinosaur hat, 5 days after surgery.
Thanks for reading … again!
Wednesday, Jan. 9, 2002
She was playing in her bouncy chair and I leaned over to talk to her. She reached out and grabbed by face and kept reaching to touch it. (How precious is this memory?)
Thursday, Jan. 10, 2002
She eats 5.5 oz every 3-4 hours and afterward she likes her paci as dessert; she will usually fall asleep. If she doesn’t, she likes to play in the bouncy and grab at her toys.
Friday, Jan. 18, 2002
Riley sees her hands and studies them. She watches as she moves them in front of her face, and she’s excited about it.
Wednesday, Jan. 30, 2002
Riley laughed out loud yesterday at Pansi.
Thursday, Jan. 31, 2002
I made her laugh out loud by making faces and talking to her. It was beautiful!
I love blogging about these little vignettes. They bring back such sweet memories, and I’m so glad I wrote them down as they happened. And kept the notebook!
Even though it brings back some sad memories, too, I’m getting so much enjoyment out of putting our journey into words and pictures. I’m remembering cute things Riley did as well as dumb stuff we did. But it’s all good, and it’s all led us to the place we are now, exactly where we’re supposed to be.
The first two photos were taken after Riley’s first cochlear implant surgery (right ear) on September 16, 2003. The first picture shows the incision: a large cut shaped like a question mark. The red ribbon covers a bit of the cut. The second picture shows the first earpiece and coil, which were connected to the Sprint in the third photo.
The fourth photo is from her surgery (left ear) on April 16, 2007. The cut is much smaller: an “S” shape. Dr. Woolley left more hair on the top layer this time, too.
I need to snap a photo of Riley’s left ear with her Freedom and add it later.
I know it’s not doing me any good to go back and relive the “whys” and “whens” and “ifs,” but I’m doing it anyway and what I just found breaks my heart.
Nov. 5, 2001 … She wasn’t even a month old yet and we’d taken her for a follow-up hearing test because she failed the newborn test. I wrote in my calendar that year “Riley has to have another hearing test.”
“Riley has to have another hearing test.”
“Riley has to have another hearing test.”
What the … ? Why didn’t we get another one? Did we ever even think about it again? Oh my Lord. What have we done? Why did we wait? I truly don’t remember the hospital nurses telling us to get another test – I remember them telling us it was probably nothing and not to worry. Or maybe that was my way of coping after we did get the diagnosis, shifting the blame elsewhere? Because it’s just too painful to think I could’ve caused Riley to wait needlessly.
We could’ve known and got her treatment so early, instead of letting her go 18 months without hearing a sound. Eighteen months!!! She could’ve been fitted for hearing aids then and had her first cochlear implant surgery at 9-12 months. She wouldn’t have lost over a year of language input! My baby … I’m so, so sorry. How could I have forgotten another hearing test? How?
A week later she had a check-up with her pediatrician, who declared, “She’s doing great.”
And she was, except she couldn’t hear.
I write this not to make anyone feel sorry for us – most anyone would be angry with us for being so stupid and naive. I’m angry at myself. But I’m writing this for anyone else who is in the same situation.
If your baby fails a hearing screening twice, MAKE AN AUDIOLOGIST APPOINTMENT IMMEDIATELY! Don’t wait. You’ll either find that your baby is OK, or you’ll be able to start treatment sooner and your baby will have a much better, much easier time learning to communicate with spoken language.
I haven’t told anyone else about this, but I wanted to share it here in case anyone needed some prodding to make the appointment.
Keep listening …