Journey to the Center of Sylvie’s Brain

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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!!