Forever Starts Today

My mom came by this morning and took Sylvie to Abma's Farm and then the playground at Willard School. My mom took a chance and did not pack a stroller since Sylvie's been trying to walk everywhere. Sylvie did not let her down and showed off her newly regained maneuvers. I call it the "old man shuffle." Every single day though, she re-learns how to use her feet, bend her knees and move forward one step at a time. Like us.

We took Sylvie to Amano for lunch although Sylvie was being pretty nuts. As soon as we walked in, I heard someone calling my name in the back and there were my friends Gabrielle, Steve, Andrea and their collective 4 kids (baby Elisabeth was at home). Sylvie's initial greeting was her crazy self but she is VERY respectful of our friends and more important, her friends' parents and calmed down. I went to leave because I'm sick of rewarding crappy behavior but once outside the restaurant, Sylvie asked to go back. So we sat down at a table and quickly ordered lunch. I showed Sylvie the 'sparkly brick oven where the pizzas are made' and she was mesmerized. And ate 1/2 a pizza. From there we went over to Morning Glory, picked out Hello Kitty stickers and then two Scooby Doo pens for her audiologists at HUMC. Without a nap, we proceeded to the Children's Hospital where Sarah and Meghan were waiting to repeat the hearing exam.

Once again, Sylvie ran, as if in Chariots-of-Fire slow motion to Sarah and we all squeezed into the audiology booth for more fun and games. Seeing Sarah with Sylvie is a wondrous sight-- they are a little team and truly adore one another's company. Sarah would go to the moon and back for Sylvie. It's been like that since early February when Sarah first tried to do hearing tests on a very sick and angry Sylvie. She spent months getting into Sylvie's good graces and clearly succeeded. Sylvie gave both Sarah and Meghan the special Scooby Doo pens with a revolver of interchangeable ink colors and built in highlighter. When we were done, we went into another room in the audiology lab so that Sylvie could watch Barbie Swan Lake and dazzle Sarah with her newly-acquired ballet moves while we discussed the results. Sarah got choked up and teary-eyed and left for a second.

Upon returning, she sat down and explained to me that Sylvie's test results today were the same as Monday's. The Cisplatin chemotherapy destroys some of the fine hairs in the inner ear and causes a loss in hearing. We had been told there was a risk of some hearing loss but really, I wish they would have just come out and said, "She will lose her hearing and most likely need hearing aid devices." Maybe they did and we ignored it. In actuality, everyone we talked to who knew a child treated with Cisplatin had major hearing loss and we told ourselves, "Not our kid." In Sylvie's case, the damage is in both ears and enough loss in both ears where, because she's a toddler, there is concern about how her speech will develop in addition to her ability to hear high frequencies and differentiate sounds from a crowd... or a classroom... or a public swimming pool with screaming kids. You get the picture. This is where Sylvie being such a verbal toddler is a very good thing. It would be harder to 'correct' if she was younger and non-verbal. Technically, it's considered "borderline" but based on her age, we need to employ any corrective measures that we can. The good news is that it will not get worse. Hooray?

I asked Sarah why we don't notice any hearing loss in Sylvie and trust me, we try whispering and all of our own sorts of at home tests. The answer is background noise.

Over these last 8 months, I have tried to not cry in front of Sylvie but I just couldn't help but get weepy. The notion of Sylvie 'not remembering' any of her early childhood illness is clearly inaccurate because she will be reminded of it pretty much constantly. The good news, although it is not fixable with surgery, it's treatable with hearing aids in both ears. Forever. That being said, forever is a long time and I'm glad right this very second that we're talking about Sylvie and forever.

Sarah showed me a sample and the new hearing aids for kids which come in all ranges of colors and patterns. My mind was racing to school pictures, ballet class, hanging upside down from monkey bars. I felt badly for Sarah who at this point was trying not to match my tears. We talked about the next step which includes seeing a pediatric ENT (darn I wish Dr. Scott was here instead of at CHOP right now; calling Dr. Rosen first thing in the morning), making molds, letting Sylvie pick out a pattern (hopefully they come in pink metal flake) and figuring out if insurance will pay even a dollar of the $6,000 tab which is very VERY unlikely and HOLY SHIT a lot of money.

We have 2 meetings in the next 7 days with Sylvie's new teachers. Forever starts today.