Phew, activation day is over. We are all relieved but no one more than Gracie. She is visibly calmer and more relaxed. I couldn’t believe how scared and nervous she was going into the listening room with her audiologist Jess (who has been her main audiologist since Gracie was born! We adore her) and she was absolutely rigid with concern. No smiles, no incessant chatter updating Jess about her life and sisters and such. She was silent and super serious. I can’t imagine how she must have felt truly not knowing or understanding what was about to happen and if it would hurt like surgery…be fine like her hearing aids… or be something she just couldn’t know to expect.
Just by chance, one of the audio teams people from WPSD (Gracie’s school) happened to be at Children’s yesterday. Her name is Naomi and Grace loves her. When she walked into the room Gracie LIT UP and started smiling and playing. I was so glad she happened to be there. Gracie got some ASL support and just a little happy nudge from someone that so clearly brought her comfort and reassurance.
This first video is of Gracie with her implant “on” her head but not truly on for speech etc. It was for the first round of “beep testing” where Gracie needed to listen for the beeps in the room and acknowledge that she could “hear” them by playing a game (putting the plastic shape into the candyland game). She’s used to this type of play as it’s how all of her audiology appointments have been since she was old enough to follow directions. Jess explained to Brandon and I that Gracie might not “hear” a beep, but more “feel” some sort of sensation and it was not out of the ordinary for her not to react at all.
Also sorry for this quality I’m still figuring out how to video!
This second video is of Gracie’s “actual activation”. It isn’t a video like you’ve seen go viral where babies or kids are all smiles when they hear their parents for the first time. Those experiences do happen of course. But we have to remember Gracie has heard sound her whole life. This is a new and different sound. She has no hearing aid on so any response she is giving is coming from her brain trying to work out the sound input she’s receiving and turn it into meaningful input. You can see her answer questions, look over at Brandon.
Walking out of the hospital we bumped into a bunch of people that knew Gracie from WPSD (like people were popping their heads out of offices saying “oh my goodness I know that little voice!” and “oh boy I thought I heard little Gracie girl!”). It’s always so amazing to see her in her element, to watch her slip into ASL and chatter endlessly about all kinds of things. She knows each persons schedule and questions them like an adult. I love seeing her little personality shine.
When she saw this rad backpack that she got to hold all of her implant pieces and chargers and parts she immediately asked if she gets a second implant can she have a second backpack. We all laughed- she’s a hoot.
Right here and the rest of yesterday she left her implant on and it was set to Program 1. There are 4 programs on her device right now, 1 being the weakest and 4 being the strongest. We’ll slowly move up in programs based on how comfortable it is to her and hopefully get her up to program 4 by her 2nd appointment next week. They don’t start kids off at program 4 because it can be overwhelmingly “loud” and not pleasant at first. She told me we sounded normal yesterday with a big smile on her face and watched sponge bob with Lilly with the volume on 15 instead of 65 which was awesome to see.
When she was swinging outside she would gently detach the round coil part from her head and look around. Then she’d let the magnet catch on again and look around for a second time. She was very clearly testing what she was hearing with the implant on, then off. On, then off again.
Here’s one last video from yesterday- she can hear her little flip flops stomping!!
So there you have it. I hope I’m helping give a better explanation of how everything works and what this process is like. Now that her implant is in our hands and on, the real work begins helping to rehab that one ear and one side of her brain that basically needs to re-learn (or learn for the first time) how to use sound input for speech and listening. We’re lucky to be relatively close to all of the appointments Grace will need this summer and couldn’t be happier with the support network of people Gracie’s got surrounding her.
Huge thank you to everyone at WPSD and Children’s Hospital of Pittsburgh who’ve made this whole journey as seamless and easy as it possible could have been. We are definitely blessed.