Monday, June 11, 2012

Update on Orion's 2nd CI: Surgery Day

CI surgery went well this morning, got home 12:45 p.m.-ish. Not before some callous security officer wouldn't let me park in a nearly vacant, very wide road in front of the Johns Hopkins ER entrance for me/Orion with obviously bandaged head/ear to run up to the main floor to pick up Rx that was waiting for me. I'd already paid $11 for daily max parking when I realized I forgot his medicine. He told me to go park again. What? For another 4 dollars? After two phone calls from home, it turns out he should've let me do what needed to be done. I hope they reassign the guy somewhere else, nothing more.

Orion is doing fine, swinging quickly between being happy on meds (that I picked up at our local Rx) and fussing.

The interpreter saw him do the sign for "MILK" in the recovery room.  I'm still not sure if he was asking for MILK or WANTED milk.  He slowly but truly finished off a whole bottle of apple juice.  I've seen incredible amounts of output in his diapers today!

More "MORE", Please!

June 10, 2012: Orion Theodore Withrow, in his own way, signed "MORE" for more cinnamon bread sticks, again and again, piece after piece.  We all saw it!  It was an incredible feeling!  For each "MORE" he signed, I signed "MORE" in response directly on his chest and gave him a piece.  (He doesn't really put his hands on ours when we sign.  That will come sooner or later.) This sign was 100% Orion-powered!  I raised my arms in victory.  The kids were excited, too!

I am not fond of Pizza Hut.  Last night we were all pooped from having a huge yard sale, it was hot, the boxes strewn around our home were annoying so we caved in and called Pizza Hut for our fine meal.  Cinnamon bread sticks were ordered, too.  Obviously Orion liked them so much he signed "MORE" after he finished each cut piece. OK, Pizza Hut, you have helped create history here for us.

I would describe his "MORE" as hands coming together almost as if to pray, getting some t-shirt in between.  The key here was to wait for him to sign it, than predicting what he wanted and giving it to him.  It's not always like this.  We need to make sure he has plenty of opportunities to try to say something.

He has from time to time signed what looked like "MILK", I would say is his first sign but it's vague.   Did he WANT milk or did he want MILK? Nothing definite like a learned movement like the sign "MORE".

Thursday, June 7, 2012

Coming Soon: Two CIs to Wiggle to 'Macarena'

Orion and his big sister, Anastasia, in her kindergarten classroom after her graduation ceremony. (6/6/2012)
Orion has surgery scheduled for the morning of Monday, June 11th at Johns Hopkins for a cochlear implant on his left ear. 

We decided to go ahead because Orion showed us he benefited from his right ear CI.  He enjoys rhythm, music (Macarena is one example), sing-songy voices.  His eyes would widen, he'd smile, he'd start breathing fast, stop playing with a toy, do a vertical dance with his legs, or rotate his ankles doing his trademark "Happy Feet".  We struggled to keep the magnet/coil on his head because it was on the flat side of his head that he favors resting on.  He is not an independent sitter yet.  He can sit but is so sure someone is behind him if he decides to lean back. (<--- he's right, tho!)  He'd pull the coil/processor off and chew on it!  So, with all these interruptions and limited time with wearing his CI, with the positive responses he's had it's clear to us that he will benefit even more with his 2nd CI. (Or benefit from having two expensive chewing toys.)  It'll help him figure out where sounds are coming from, including triangulating where the ice cream truck is.

The quest for June 11th all started when Orion was seen by a nurse practitioner for an ear infection back in April.  She wanted him to get a CT of his left ear area.  When I finally got that done at Johns Hopkins last month the rest was like running water.  Eight days after Orion's CT was done, his surgery was confirmed for June 11th.  During those 8 days, we returned to JH for surgical consult and then a hearing test (with his "old" hearing aids). That was fast! I was worried it'd happen much later into the summer, screwing up our vacation and moving plans.  I hope Orion stays healthy through the weekend, same goes for his surgeon, and then the surgery is already behind us by 10, 11 a.m. June 11th. 

CI activation is usually a month later.  It hasn't been scheduled yet.  We know Orion and I will fly back to Baltimore for this since we're taking off cross-country, then mid-country before the ideal one-month period.

Friday, June 1, 2012

There's No One Like Orion

Cool water and a Mom-shade on the last day of PIP, May 31, 2012. (Kendall School)
Orion has Orion Syndrome.  This is not an official syndrome, or at least not yet, or it'll be some other name.  There's no one like Orion, of course, and apparently no one has seen before the genetic/physical make-up like Orion's.

During my last visit (with Orion and Tasia on 5/29/12) at National Institutes of Health's National Eye Institute in Bethesda, MD, I received some fascinating information.  A couple genetic tests have come back with definitive results.  We're waiting for the rest of the family's blood to be drawn and checked to complete the genetic picture behind Orion.

Now, I am very curious, here.  Since it's said that Orion's the first of his kind, I want to be certain of that.  I'm wondering if there's a d/Deaf person out there, with amazing white hair at birth or at a young age, very poor vision and not an albino.  (Or if they've been mislabeled as albino...) If there is, has he/she been checked out for a certain gene?  I have seen such a man in a glance a long time ago but know none personally to inquire.