Long time, no blog...

TUBES... In December a minor miracle occurred. We took Will to his three week follow up after having tubes put in and discovered that Samantha's eardrums were full of fluid. She had battled ear infections through the fall right along side Will. It's a minor miracle because we've always had suspicions that her hearing wasn't perfect. That it would come and go basically just like fluid does in some kids' eardrums without having an observable infection. A year ago NACD had suggested a regular schedule of tympanograms (way of checking if the eardrum is moving or full of fluid and rigid). After two tests showing no fluid, and a pediatrician and ENT thinking we were crazy to want to keep following up on "nothing", we basically surrendered, and decided to ignore our nagging suspicions. So, long story short, Samantha got tubes put in the week before Christmas. Her speech had pretty much fizzled down to nothing over the fall (no doubt, due to her world sounding like it was underwater). All the words she used to say, though maybe only I could have understood them, were gone. She became unwilling to even try to say things when I asked her to. Within two weeks of tubes, her words were back and she is now willing to TRY to say just about anything. Coincidence? I don't know, but I'm glad I don't have to keep wondering if she's hearing me.
FM UNIT... Along the same lines, two weeks ago we started using a device called an FM unit during all program activities that involve receptive and expressive language (ie, language she needs to take in from me and language she needs to speak back to me). Basically it's a set up for me to speak into a microphone and that sound is delivered to her headphones. She has a microphone attached to her headphones as well (though it isn't working due to "technical difficulties") so that she can better hear and focus on her own vocalizations. Teachers use a similar set up in classrooms with kids who have hearing loss. It's fun to watch her face light up as she puts on the headphones and looks at me with bright eyes as I speak. One thing that definitely changed is that she went from 50% successful on a "know your colors activity" without headphones, to an immediate and resounding 100% the first time we did that activity with the FM unit. Whether the increased success is due to overcoming a difficulty hearing or just focusing her mind to LISTEN, I can't say. But so far, it seems to be a positive supplement to her program.
PROGRAM... So, after driving to our last NACD evaluation in one of the craziest blizzards and being hit by another driver on the way home, (who by the way was hauled away from the scene because of an outstanding warrant for his arrest due to drug charges), we are back on a structured and intense program. We began January 5 when things settled down after the holidays. Samantha has been very cooperative and doing great.
SPACING OUT... After two weeks of working hard on the new program and using the FM unit for about one week, Samantha started having increased frequencies of "spacing out". She began doing this randomly (one to four times per day) about nine months ago. She stops what she's doing and rolls her eyes up a little to the right for about three seconds, then continues on as if nothing has happened. We told NACD about this and they thought these were periods of her thinking about things visually because she doesn't have the language to fully process everything in words. This explanation seemed somewhat satisfying until last Monday morning when Trey commented that an episode at the kitchen table seemed strange and not at all as though she were in deep thought. I already had a nagging feeling growing inside and his nudge was all I needed. I called the pediatrician and was told to get an episode on video, which was not at all hard to do. That day I tried to count how many times she "spaced out" and it was at least thirty times (by Saturday I estimated about seventy or more times). I decided to talk to NACD before going to the pediatrician. While waiting to hear from NACD, on Friday, Samantha had two very different episodes; once she stopped midstride while crossing the kitchen and dropped a bowl of popcorn. The second time, she was standing on a chair and fell limp bodied onto the kitchen floor. We rushed to the pediatrician's office and after viewing the video he said that he thinks she is having "absence seizures". We are scheduled for a visit to the pediatric neurologist in the morning.
A friend of Trey's said, in a nice way, "I would've thought you would have taken her to a neurologist three years ago!" and I understand how it can seem that simple. Unfortunately noone prescribes very expensive medical procedures based on "mommy hunches", etc. That is why the tubes are a small miracle and I'm hoping these episodes are a blessing in disguise as well. We're excited to finally get a full service tune up, even if it's just from the neck up. One thing I have noticed in the last few days since I am really tuned into these "space outs" is that the most common trigger is getting Samantha frustrated, sometimes with un-met desires, but mostly with challenging her mentally with program activities. It's as though she can't think too hard or her brain just shuts down. I am hoping that if a seizure medicine is necessary that it might also be beneficial in keeping her little neurons firing while we are working on learning new things and in the end possibly be the key to furthering her development.
I'll try to be better at updating this blog. If you're tired of checking and finding nothing new posted, click on the RSS feed symbol (orange square with sort of a white rainbow icon- it's up in my address bar). It's how you can be notified automatically when someone updates a blog or web page that you want to keep up on. Here's a video of Ellie and Samantha that you might enjoy. Yes, it's totally unstaged.