Journey to the Center of Sylvie’s Brain

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go shawty, it’s yo’ birt-day… September 7, 2009

Filed under: Uncategorized — janaquinn @ 7:20 pm

okay, so I’m a couple of days late, but I’ve only just now gained the self-control to acknowledge Sylvie’s birthday without breaking down into tears. So please forgive my tardiness. 🙂

HAPPY BIRTHDAY SYLVIE!!! The bug reached the ripe old age of two this past Wednesday, prompting me to reflect a bit on the past year. And while it’s had its share of anxiety and uncertainty, the good times far outweigh the bad. And now as we enter a new stage in Sylvie’s young life, I’m bolstered by all the progress she’s already made in such a short time, and so excited to see what this coming year holds in store… hang on to your hats, folks, because I have a feeling Sylvie-bug’s going to knock it out of the park this year!

Back to updates, in the meanwhile… Sylvie continues to respond so well to her therapy, and continues to add more “stuff” to her bag of tricks. Most recently, she’s begun to point voluntarily and is getting better at making choices. We’ve also been using a 3-2-1 board to help her with transitions, as suggested by her therapists, and that’s also been really helpful. She’s also counting to ten now… oh, and how can I forget-  she heard Caitlin (one of her therapists) say “awww, man!” one day, and she’s been repeating it ever since… it’s hysterical!  The EEG and MRI we had done both came back normal, which is great news.  Even better news is the fact that we probably won’t have to have those procedures done again for a loooong time. Woo hoo!  We’re also about to change Sylvie’s therapy schedule a bit… beginning next week, she’ll be attending her practice pre-school/clinic two mornings each week.   She’s gone twice already, and she’s doing amazingly well… in fact, the therapists told me on the first day that hers was the best first day they’d seen in a looong time (insert beaming mom’s face here).   She’ll also be working with another new therapist from Milestones (who happened to graduate from Stonehill, so you KNOW she’s good!), so I’m looking forward to getting everyone acclimated to this new schedule for the year.

And the very best thing? She’s started to say “ioouuooo”.  For those of you not fluent in Sylvese, that means “I love you”.  My life is now complete.  🙂

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August Update August 20, 2009

Filed under: Uncategorized — janaquinn @ 8:40 pm

Sylvie’s in the middle of an ABA session as we speak, and Amelia’s busy at my feet assembling a Potato Head family, so I thought I’d take advantage of this unexpected free moment to post a quick update. Things continue to progress pretty well with Sylvie.  She’s about a month into her more intensive therapy schedule, and she’s adapting quite well. The ABA sessions can be a little frustrating for her, but I think with a bit more time she’ll really get the hang of it. In the meanwhile, her developmental specialist from EI continues to work her magic on her, focusing on stuff like attention span and eye contact, both of which are improving. In addition to a developmental therapist, Sylvie now gets weekly visits from a speech therapist and an occupational therapist, who provide specific support to Sylvie (and me!) in their respective areas- in particular, the OT has been really helpful in helping me understand how Sylvie’s sensory issues play a role in her development, and how I can help her learn to regulate herself when she may get overstimulated or overwhelmed. We’ve  also started to notice a lot more language emerging; it’s still mostly mimicking, but there’s quite a bit of spontaneous chatter as well.. She’s also adding more melodies to her already impressive repertoire… Karaoke bars won’t be safe when she gets older!

In addition to her existing therapy regimen (and what a regimen it is!), Sylvie will begin attending a group session with her therapist next week at Milestones. It’s set up like a preschool in order to prepare the kiddos for a more structured learning environment. Though the term “structured” takes on a whole new meaning when dealing with kids on the spectrum… it refers more to the routines of the day and sequence of events, as opposed to the activities themselves. Those are very open-ended, allowing the kids to explore all their senses, which for Sylvie in particular, is great. The highlight of the practice preschool is undoubtedly the sensory room, complete with ball pit (!), tunnels, bouncy swing, rock climbing wall, and zipline (yup, a zipline!) It’s like someone snuck a peek in Sylvie’s head and built a room based on what they saw! Here are a few pics of the room. I’m nervous at the thought of her spending hours away from me at a time, but the therapists on the Milestones staff are obviously amazingly talented and well-equipped to deal with whatever curveballs the Bug throws at them.

So things are progressing well on the therapy front, and we’re beginning to investigate more on the neurological front as well. Sylvie had her neuro appointment several weeks ago, and based on her hypotonia, ataxia, zoning out spells and global developmental delays, the neurologist quickly ordered up an EEG and MRI to see what, if anything, was up.  First on our docket was the EEG, which required Sylvie to be sleep-deprived. Not just “miss a nap” sleep-deprived, mind you.  REALLY sleep-deprived.  We had to put her down at 11 pm the night before the EEG and wake her up at 5 am.  As if that wasn’t gross enough, upon arriving to the appointment, Sylvie was tortured by a nurse who had to mark up her skull and apply 24 leads to it with a goopy adhesive.  Bless her heart, that nurse didn’t flinch, even while Sylvie screamed loud enough to raise the dead. Poor thing was so fried that when it came time for the actual EEG, she fell asleep in about 3 minutes flat. So at least the procedure itself went well… it’s the process leading up to the procedure that left a bit to be desired! We’ll have the results of the EEG in a couple of weeks and will hopefully have some more insight as to whether those pesky little zoning out spells are actually seizures or not.

We have the MRI scheduled for a week from this coming Saturday, so for now I’m just going to “relax” until then. 🙂 More to come soon!!

 

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.)

 

Tentative Diagnosis June 23, 2009

Filed under: LADDERS,PDD Diagnosis — janaquinn @ 11:13 am

Sylvie’s evaluation with Dr. McCormack was yesterday at LADDERS, and like expected, it looks like her diagnosis will be PDD-NOS. It’s a very confusing wave of emotions I’m feeling… sadness, validation, anxiety, even some relief that the doctor didn’t feel her delays qualified her for a full-blown Autism diagnosis (at least not at this time.) We meet with the Doctor again next week to get the official diagnosis and should receive her formal report a week or two after that. I guess that’s when the real fun will begin… in the meanwhile, I’m going to try and focus on all the things we have working to our advantage: identifying it early, her (relatively) good social skills, and the fact that she’s got more support than she knows!

 

Some background on the Bug April 30, 2009

Filed under: Uncategorized — janaquinn @ 2:36 am

Sylvie arrived UNfashionably early at 36 weeks 3 days, and she’s been keeping us on our toes ever since.  She was a pretty mellow baby, and aside from a few minor blips (such as her never taking a bottle), I found her to be pretty easy-going all around.  At around 5-6 months, though, her easy-going nature started becoming an issue, when I noticed she couldn’t be bothered to roll over from her back or belly, or push up on her arms during tummy time.  Nothing major, but I did mention it to my pediatrician, who recommended we get in touch with Early Intervention… after a pretty thorough evaluation, we learned that Sylvie had enough of a developmental delay in gross motor skills to qualify her for services.  She’s now been in EI for nearly 1.5 years, and has shown great improvement in many areas, including gross motor skills. As some areas improved, though, it became apparent that other skills were not emerging at the same rate. An area of particular concern has been communication- both expressive and receptive. Sylvie has always enjoyed taking up residence in “Sylvie World” every now and then, but at nearly 20 months, she still does not speak, nor does she make any real concerted effort to communicate with those around her.  She’s not particularly interested in engaging people in play or any other interactive exchange, and she sometimes acts as though she’s deaf, ignoring our voices when we call her name (recent auditory tests conclude her hearing is fine.) I brought up my concerns to our doctor at Sylvie’s 18 month well-visit, and much to my sadness and joy (yeah, at the same time- funny how that is), she agreed that there was cause for concern and referred us to several highly-regarded facilities in the area specializing in the evaluation, diagnosis and treatment of developmental disorders.  We have gone ahead and scheduled an appointment for her with LADDERS for June, and I am on pins and needles waiting for that day. In the meanwhile, her EI team has revised her IFSP, keeping in mind the possibility of more intense developmental disorders.  They will now be focusing on helping her develop her mimicing abilities as well as improve her attention span in the hopes that these two skills will make learning other skills easier. I’m thrilled to have such a pro-active, knowledgeable and willing group of therapists helping Sylvie. I almost feel like I don’t *need* the diagnosis, just so long as we’re taking steps to get her the help she needs, but I know getting a formal evaluation is critical.  So now we wait. And see. Should be interesting. In the meanwhile, I will enjoy gazing at this darling every day.

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