Journey to the Center of Sylvie’s Brain

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The Golden Girls said it best… July 29, 2009

Filed under: Uncategorized — janaquinn @ 1:33 am

when they said, “thank you for being a friend.”

A huge thank you to everyone who’s reached out to us upon receiving my initial email… I know we have a lot of love and support around us, but it’s amazing what a phone call or email can do to remind us just how lucky we are to have such good friends and family. Thank you for all your offers of help, too… I just may take you up on them someday!

Sylvie (and I!) are slowly wrapping our heads around this new life we’re embarking on. Truth be told, so far, Sylvie seems to be adjusting quite well to the constant parade of new faces walking through the door (granted, they’re usually carrying a duffel bag of cool new toys, so that helps).  I, on the other hand, am still adjusting. It’s a little tough for me to let go of the more spontaneous life I’d settled into with the girls… with so many appointments now, it’s very hard to do anything “spur of the moment.” I’m sure this new routine will become second nature as well, but getting used to it in the meanwhile is a bit of a drag. (insert dramatic sigh here.)

okay, enough from Debbie Downer… and onto to the girl of the hour. Sylvie’s responding really well to her new therapists, which is great, since she’ll be spending the better part of her waking hours with them. And while the intensive therapy hasn’t kicked in yet, we continue to see Sylvie pick  up all sorts of new tricks…  her communication skills were a little slow to develop, but she’s now got a bunch of words and can even use a few of them to communicate her wants and needs (you know, stuff like “up?” and reaching up to me… that kind of stuff that’s second nature to most kids takes a bit more practice for the Bug.)  She’s also discovered her climbing legs-  so no chair, coffee table, counter, or other elevated surface is off limits. Makes for quite a few near-death moments every day.  Good times indeed. 🙂

okay, off to watch the Bachelorette season finale… uh, I mean read about the latest research on Autism treatments and stuff.

 

You down wit’ PDD? Yeah you know me! July 23, 2009

Filed under: LADDERS,PDD Diagnosis — janaquinn @ 1:20 am

Okay, so it’s not exactly a laughing matter, but it’s common knowledge that I rely on humor (many times too heavily) in times of stress. Why should now be any different? Sylvie’s official diagnosis at LADDERS revealed what we’d been suspecting for a few months now: PDD-NOS.  While it’s been pretty intense to get the official diagnosis, there’s also a bit of relief and validation in knowing that we were right about Sylvie.  We’ve had some time to process this new information and make our peace with it, and for the last few weeks, I’ve been putting on my thinking cap during nap times and sifting through the mountain of paperwork and therapy options before me.  After several weeks of phone calls, voice mails, insurance referrals and a little bit of begging and pleading on my part, Sylvie’s new and improved therapy schedule is now in place. We’re beginning the new treatment regimen this week, which includes an hour of speech therapy, an hour of OT, and approximately 7 hours of ABA therapy, all in addition to her current sessions with her developmental specialist. The ABA sessions will hopefully go up to 10-15 hours per week as Sylvie gets used to this more rigorous therapy session. I’m excited about Milestones, the service provider we’ve chosen, since they offer several treatment methods and can tailor their therapies to best meet the needs and strengths of each kid. They also offer a “practice preschool” that children can attend with their therapist, which provides them a chance to apply skills they’re learning in a setting outside of home. Sylvie will start attending that once a week in the next month or so… practice preschool…  sob.

In the meanwhile, we’ve also scheduled (at the recommendation of Sylvie’s developmental pediatrician) more thorough neurological, speech and OT evaluations to make sure we’re not missing any key pieces of information as we proceed with her therapies. Oh, and she has a follow up with her ophthalmologist as well…  poor kid’s not even two and she has a medical team the size of the Pats’ offensive line. I should note- one of the upsides of all this coordination is that it doesn’t leave me too much time to get inside my own head… I have a feeling if I had a few days to just sit and think about all this, I’d end up in a very dark place. I know Sylvie’s going to be okay, but there’s just SO many questions dancing around in my head now- questions, that for some reason, weren’t there before. It’s funny- she’s still the same kid she was before her diagnosis, but now I think about her future in terms of LIVING WITH AUTISM, and it freaks me out. Funny how my brain likes to mess with me. Maybe it’ll get better with time. Who knows. Like I said, though- I’ve got too many appointments to make to really think about it too much. Thank God.

All in all, though, she’s doing great. She has days where she astounds and amazes us, and days where she frustrates and infuriates us…  just like a typical not-quite-two-year-old, I suppose!  I’m just looking forward to finalizing all these appointments and therapy schedules so I can move on to much more urgent matters… that’s right-  her birthday party. Can’t believe baby girl’s gonna be TWO!!!

 

How could I forget?!? July 17, 2009

Filed under: Uncategorized — janaquinn @ 7:00 pm

…. THIS?!?

sylvieglasses

Sylvie is now rocking a kick-ass pair of pastel pink (obvy) spectacles, courtesy of a pesky strabismus. The glasses allow her eyes to strain less when focusing on things close-up, thus eliminating that oh-so-coveted “lazy eye” appearance. It took Sylvie a few days to get used to them, and it took me a bit longer to get used to her IN them, but now they’re as much a part of her as her goofy little walk.  It’s like her cuteness has been squared… it’s just not fair.

(for those curious, this was taken in some giant ball pit-type thing at Storyland, aka HEAVEN for Sylvie.)