Family Living with Cerebral Palsy: February 2013

Last week on Monday James, Elliot and I went to Rochester for a check-up for James' cochlear implant. Sunday we drove down to Rochester in some not so great weather. It rained all the way until the Twin Citites and once we got there it turned to slush and snow making for some pretty bad roads. Monday morning our appointment was scheduled for 9am but had to be pushed back a little because one of our normal audiologists was sick. We didn't get pushed too far back though :). They checked out his device to make sure it was working correctly and checked his maps. Over the past 3 months I actually didn't change any of James' programs/growing programs. I was really hesitant to do this because he was still crying a fair amount when we put the implant on in the morning. I wasn't willing to increase the sound if he was giving me negative reactions. But I found out that instead of putting the device on his head and then turning it on, I should have been turning the device on and waiting a few seconds before placing the microphone piece on his head. oops :( Lesson learned. I've slowly been turning up his volume in program 1 now that I've figured that out and haven't had a negative reaction since. They people we work with at Mayo are so awesome. They are very tolerant of our ever busy Elliot and help to keep him busy with toys. When it comes time to put James in the sound booth, James, myself and Alice (one of the audiologists) go into the soundbooth and the other audiologist (the one who was sick this time-Melissa) and Elliot head into the control room and they keep Elliot busy in there with some quiet toys. This time when we put James into the sound booth he did really well. He is responding to voices wonderfully and now even at a softer level than before! Yay! He's responding to some sounds but not as much as voices-but they tell that that's typical. Our new project to work on is now tying sounds to objects-like saying cow and then "moo" to connect the two of them-using a picture always helps with James too.
We also did a little questionairre that we had done before James was implanted. I don't remember doing it, but his score at that time was a 2-3. The score is pretty simple. They ask questions and each question you answer 'yes' to, adds a point. He's now scoring 7-8 which is right on track with a 3 month old. I was pretty happy about that since he's had it for 3 months. But then they showed me what other kids are doing after they're implanted and they score between 13-33. That was a little disheartening, but then I realized that some of these are kids implanted at a much younger age, they don't have cerebral palsy and they have much more consistent use than James does. That's something we'll have to work on. Part of James' inconsistent use comes from us doing ABR. Anytime James is lying on his left side-the implant won't stay on. So any of this ABR exercises that require him on his left are a no-go for the implant. He also doesn't keep it on anytime he's in the car or on the bus. James also for some reason takes his bottle better if we prop it for him while he's lying on his side on the couch-well just the way our living room is laid out right now this puts James laying on his left side to see the tv while he eats-and you guessed it, that means no implant while he's eating or if he's just lying on the couch. When we get James up and into his new Special Tomato chair, he does ok with keeping the implant on-but he can also manage to knock it off lots too. If you remember the microphone piece attaches to his head with a magnet and he's gotten pretty good at knocking it off on purpose, but sometimes it's just by accident and the way he moves his body. We've found a headband that came with his giant box of supplies that helps keep microphone on, and that has helped a tremendous amount-especially at school. So, I guess all in all, it was pretty successful, but mom and dad and James have lots of work to do.

Our latest family development-WE BOUGHT A HOUSE! We are super excited to be getting out of the apartment. It's not a terrible apartment, but apartment living doesn't exactly agree with us, or fit us. We are moving into a 4 bedroom 2 bathroom home in West Fargo with a heated garage, fenced in big backyard with a swingset, open floorplan, lots of storage and a hot tub. We are super excited and I think the kids will like all the room they'll have to play-inside and outside.We close on March 12-and we'll be super busy right up until then. In February James and I are heading back to Montreal for some more ABR training, I'll be going on my scrapbooking trip with my friends from WI, and of course we'll be busy working and going to appointments and packing our apartment up! I apologize in advance in case I don't keep you all updated! Hopefully you'll see and update about ABR and another with pictures of the new house!