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".

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.

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.

Upcoming Chapter for the Withrow Family: The Draw of Austin

Barton Springs Pool is an obviously popular place to cool off.

During Spring Break the first week of April, we visited Austin, Texas to look at the Texas School for the Deaf (TSD), Texas School for the Blind and Visually Impaired (TSBVI), Torchy Tacos (mmm!) and surrounding communities west and southwest of Austin.  All in our keeping our mind open about possible places to relocate so all three of our children would equally get quality educational services- our Deaf son, Skyler; our hearing daughter, Anastasia; and our Deafblind son, Orion.

The water comes from a natural spring, I was surprised springs existed in Texas.

Uncertainty to Certainty
It all started a year and half ago when Thomas and I wanted to know where then few-month old Orion would go to school when the time came.  We agreed that we needed to know Orion's communication skills, when they develop, so we would have a clear picture of which program would be a better fit. We eventually found Orion understood touch cues (which happened to be signs we modified to use directly on his body) and object cues (bottle, spoon, diaper, goatee, etc.)  Orion has shown us he will eventually communicate through tactile sign language.

We've learned so much about available educational services for Deafblind children, school options for all our children and how they affect family logistics.  It became clear to us that we cannot stay in Maryland without setting the odometer of our van on fire. We are believers in state schools for the deaf usually having appropriate-to-best resources for the students they serve (and they meet others just like them) and the same applies to state schools for the blind. 

In Maryland, the School for the Blind (MSB) is in Baltimore which is around 60 miles away from either Kendall Demonstration Elementary School (KDES, for Deaf students) in Washington, DC or the Maryland School for the Deaf (MSD) in Frederick.

A) Even if we were allowed to place Orion at MSD, they do not have the resources to serve Deafblind children.  (MSD's admission policy says if a child requires braille to learn or cannot learn visually, he/she is referred to MSB.  I personally think this criteria needs to be reconsidered, as ASL is also an accessible language for education of Deafblind children who reach that level of communication.  Students would have access to proficient ASL users, whether staff or peers, at MSD.  Goodness! Orion's own family uses ASL.  His parents and big brother are Deaf... talk about a good example of contradiction with the reasoning behind this policy.)  MSD does not serve Deafblind children through their family education/early intervention program (birth to 3).

Snippet from MSD's Admission Policy (.pdf file), retrieved online 5/13/2012.

B) If we relocated to Baltimore and placed Orion at MSB, we would be torn in half, because Skyler still needs to go to his school 60 miles away and we refuse to let our children live in dormitories for at least their elementary school years.  There is a particular arts and technology school that I would enroll Anastasia in the Baltimore area.  Still, in this scenario, Skyler loses out.

C) Kendall School is willing to work with us on services for Orion when he ages out of PIP (Parent-Infant Program) at 3.  Even though they're willing, our family prefers to place Orion in an established program that has been serving Deafblind students for years. It has been really nice having our sons in the same school, Skyler in the 2nd grade and Orion in PIP.  I applaud Kendall's support and interest in including Deaf children with other disabilities. One example: After Orion was born, we were welcomed to apply for Orion's placement in PIP.  He started attending the first week of November 2010 at 4 1/2 months old!

D) We are willing to work with our local public school for Orion, but not without the resources of the School for the Blind which is still 60 miles away. We want daily support and instruction from people who specialize in Deafblind children.  Orion started receiving early intervention services in Prince George's County at 3 1/2 months old. They have been supportive, resourceful and effective.  There have been times when they noticed something subtle or shared with me opportunities not to be overlooked.

(Did you notice yet? I'm a BIG supporter of early intervention!) 

We can't forget CBSS (Connections Beyond Sight and Sound, Maryland's state deafblind project) and the awesome people within! The first person (of several!) I met regarding information on deafblind services for Orion, anywhere, was through CBSS around just two weeks before Orion was born.  You may have heard me rave about them. I can't impress enough the relief it was to meet and talk about our Deafblind son, sandblasting blowing away the cobwebs of worry and a million questions. 

The Draw of Austin
The Texas School for the Deaf has the resources for a well-rounded education (Yay for Skyler!) but the cherry on top was that TSD had their own vision specialist who had experience working with deafblind children.  We learned that TSD has several deafblind students with interveners.  We then visited TSBVI where we saw 5 deafblind students.  Each one of them had an intervener!  That is exactly what Orion needs!

TSBVI is not a K-12 program so wherever Orion is enrolled, the IEP team can determine how to use TSBVI as part of Orion's education.  TSD has had deafblind students go in between TSD and TSBVI.  (The two schools are both in Austin... a 9-minute drive apart.)  Like some of the deafblind students at TSBVI, Orion can enroll in the home school district and go to TSBVI.

People from the Texas Deafblind project (offices are at TSBVI) took some time to meet with Thomas and I to answer our questions and share with us about the statewide services.  We got pamphlets after pamphlets on services and parent organizations in the state. TSD's vision specialist was with us for the TSBVI tour and this meeting.

There are several programs nearby, consistent from elementary to high school, that are amongst the best schools in the state based on their assessment scores.  We have a couple possibilities and we'll know more later this summer where Tasia will go to school.

After a fun long day of places seen, new and old friends visited.

Packing Up
We're moving as soon as we can help it, late June.  We will miss our lush green swatch of Glenn Dale, Maryland so much, but we must uproot and relocate for better opportunities for all three of our children. We will miss all the old and new friends we made here in Maryland. We are grateful to have met and sorry for the short time we've had with those we befriended after Orion was born. 

The good thing is that my blog will keep on going! :)

Not To Be Ignored: Washington State
Orion and I visited my home state of Washington to visit schools there, too.  Washington is a beautiful and special place for me.  The "N" in my compass is always pointed that way.  I plan to blog about WSD, WSSB and a couple public schools with Deaf programs.  I have pictures I will share of WSD and WSSB's gorgeous campuses.  I was so impressed, yet Austin, Texas impressed us even more despite my fear of it's heat and lack of family in the area.  That's all for now.  More to come in a future blog post.

All the best to Orion's Fan Club! <3