Monday, March 23, 2009

The Eyes Have It

We had a great big Agency 2 team meeting at our home the other evening, that really brought home the magnitude of the plate-spinning we (I) are doing on Joy's behalf these days.

There were 11 people at the table:
  • 4 House Blend baristas (including a brand-new one, we've had a spot of turnover)
  • the House Blend senior therapist
  • the House Blend lead therapist
  • the county case manager
  • the school-district team leader
  • Lynda from daycare
  • JoyDad
  • JoyMama

It was a fine meeting, lots of positive Joy-stories and a good opportunity to get on the same page with some things that we're doing with her PECS photos and such. We sent a plate of on-sale, store-bought cookies around the table. I couldn't believe how appreciative everyone was. I guess people are too overwhelmed or don't think to do those little hostess-y, favorite-place things for their wonderful therapists?

The next day, JoyDad gave me an extra hug and thank-you for all the coordination I do to keep this whole show moving. (That would be what Maddy recently referred to as "wrap-around services," I believe.)

Hug appreciated! It's a crazy edifice we've built here, especially when you consider that this still isn't EVERYONE who is on Joy's team. We were missing one barista who had a conflict with the meeting time, and Joy also has a speech therapist and an occupational therapist with the school district who weren't involved with this meeting. Then there's the team at church, where she has two Sunday-school teachers and TEN different volunteers (one for Sunday school and another for worship, a different pair every week of the month). One of those volunteers did the original recruiting and scheduling, which I appreciate deeply but which does not relieve me of the responsibility to let the right people know when we'll be missing a Sunday, for example. In a similar vein, the Senior therapist is in charge of scheduling the House Blend barista sessions, but I'm the one who has to pick up the phone and go scrambling if someone doesn't show up, not to mention making sure that either JoyDad or I will be in the house during the sessions!

And then there's the primary care pediatrician, and the pediatric neurologist, most excellent partners indeed.

And then any other specialists as needed...

Which brings me to our latest new wrinkle. JoyDad has been noticing for some time that Joy's eyes don't always seem to be tracking well together. I don't see it as much as he does (I think mostly I don't want to know, LA LA LA LA....) but eventually even I had to admit it. I did check informally with her neurologist to confirm that it didn't sound seizure-ish, but rather strabismus-ish.

Here's why I don't want to know. When Joy was diagnosed with linear nevus sebaceous syndrome (LNSS), we went through a round of specialist visits to check out some of the things associated with the syndrome. One of those "things" is ocular abnormalities. So we went to a pediatric opthalmologist in September 2007.

That eye-check visit was THE WORST clinic experience I've ever had with Joy. And this is a girl who has had 3 plastic surgeries under general anesthesia, a sedated MRI, a 4-hour video EEG, the list goes on and on. We'd arrived on time for the eye-check and ended up waiting for nearly an hour to see the doctor. The waiting room was crowded and noisy and under construction. We went through all the snacks and toys I'd brought along in the first 30 minutes. Then Joy had a seizure, if I'm remembering correctly, putting her in a foul foul mood. Then finally we got to see the doctor... for the FIRST time. Oh, hadn't anyone told us... they needed to dilate Joy's pupils. Please go back to the waiting room for another hour to give the drops time to work! I went back to reception and begged to be allowed to go home and come back, just a 5 minute drive. Well, OK, they finally agreed, but you have to be back in 45 minutes to be sure you don't miss the next round with the doctor. So we made it back in 45 minutes... and then waited ANOTHER 40 minutes, Joy with wide wide pupils and refusing to wear anything like sunglasses on her face. Joy and I were both basket cases by the time we saw the doctor again. The doctor was barely able to catch a quick peek into those poor sensory-overloaded dilated eyes, and in that quick peek didn't see anything worrisome.

Alas, strabismus is on the list of ocular abnormalities that can be part of LNSS. (And associated with autism too, I think maybe?)

So I dragged and dragged my feet about contacting Joy's pediatric office this time, but finally eventually did, telling my whole sad story about why I was really really hating the idea of an eye appointment. I didn't get to talk to the pediatrician himself, but nurse who called back told me that he'd recommended a pediatric opthalmologist who happened to be the same one we'd seen before. Not that I had anything against the doctor -- we really didn't get to interact with her much -- but she's still at the same clinic!! As my dear friend Mama Mara would say, GAAAAAH!

The nurse tried to talk me down. You just tell them your story, she said, tell them Joy's situation and that she CANNOT have another experience with those kind of waits in that kind of waiting room. If they give you any guff at all, talk to the clinic manager. Just don't take no for an answer. They'll take care of you if you escalate it properly.

Friday morning I heaved a big sigh and went to the phone. I spoke to a very nice appointment-desk lady who was very sympathetic. She put us in for a first-appointment-of-the-day so we'd get in quicker, with fewer people in the waiting room. If there's an exam room available that day, we can maybe wait there... while we wait for her eyes to dilate... no, ma'am, no way around that. This kind of appointment for this kind of concern, we've got to do the dilation. (GAAAH!)

She says she made all sorts of notes on our record, so we can have something to point to when the appointment actually comes around in July. I'll have to talk to whoever is in the clinic that day, though, about actually like getting them to honor any of this.

LA LA LA LA, I'm not going to think about this again till summer... unless you have some strabismus-related or waiting-room-related wisdom to share...

Isn't there a therapy schedule I can go coordinate somewhere, keep myself occupied?


Anonymous said...

But to look on the bright side, Joy hasn't had a seizure in ages. So hopefully her mood will not take a turn even if you do have to wait. And she's very much into jumping now. So you could do some jumping runs down the hallways. IF that trend continues until appointment time. Never know...
It there a an adult friend you could take with you? Someone other than Mom to entertain Joy during the wait?
Just some thoughts. But I'm glad you have the appointment. I've noticed her eyes wandering quite a bit more lately. So it will be nice to have that checked out.

Anonymous said...

Sending much gaah empathy. Lynda's idea of another adult, for support to you, is a great idea. Maybe someone from church?

Just like any other single aspect of Joy's life, perhaps a solution to anything affecting her vision will bring more progress. (Suggesting reason to hope.)

The team meeting is evidence of many blessings and reward for the plate spinning. Can you consider the opthamologist a team member, too. Maybe some cookies or donuts to the staff when you arrive....

mama edge said...

GAAAH, indeed. I pull out all the stops these days to get the clinic folks on my side, making them think long and hard before they subject us to interminable waits. How? I tell them how it will negatively affect them if we have to stay there, and all of a sudden they have motivation to think outside the box! (BTW if you like Lynda's idea of bringing "an adult friend" to help you, check with me to see if I am available. I know the "adult" part is questionable, but I am definitely a "friend", I hope.)

Anonymous said...

Plate spinning is an extreme understatement, my friend. Wowzers. I have no right to complain about my life. No. right.

Joy is so very lucky to have such dedicated parents and "baristas" working alongside her. :)

datri said...

I can't remember if it was you I mentioned it to, but there's a whole autism vision thing, supposedly. The developmental optometrist (Melvin Kaplan) who does the whole prism lenses thing is a few counties away from us but charges like $1000 a visit and I'm not sure if it's a bunch of WOO or not. You can google Dr. Kaplan if you're interested in the whole theory behind it.

Anonymous said...

Glad Joydad appreciates all the work you do to make all of this work. Those hugs can mean so much.

And I like Barbara's idea .. disarm em with cookies!!

Quirky Mom said...

Ugh, that sounds awful!

I have no strabismus that I know of, but I was recently diagnosed with convergence insufficiency -- my eyes do not come together to focus on the same object in my near field. Lots of problems with blurry vision, eye strain, reading, depth perception... and not caught until I was 32.

So on the bright side, Joy's lucky that JoyDad noticed this when she's young. :) Neuro-ocular conditions are MUCH easier to treat in kids whose brains are much more plastic...

Elizabeth Channel said...

You are so inspiring and uplifting! Even with all you have to coordinate, you are always so joyful!

Thank you!

JoyMama said...

Some wonderful ideas! Cookies, taking a friend along to eat all the cookies with (that was the idea, right?), making sure the clinic staff see their self-interest in keep the waits short, and more... excellent stuff. Thank you all. I feel better -- maybe not joyful about this particular appointment, but better!

Anonymous said...

Wow, that is a waiting room horror story! We clocked some time in a waiting room today off and on (all told, it was about 2 hrs). Rhema was really into a Barbie laptop computer -- just hitting the buttons over and over, but it kept her happy. Maybe a portable DVD player might come in handy for the July visit?
As Lynda said, it's great that Joy hasn't had a seizure in months, is that right?

Maddy said...

I hear yah! My older son had vision therapy for one semester once a week for 30 minutes. As you probably already know this is not 'approved' so we paid out of pocket. At $135 per 30 minutes it was a real back breaker. Eventually we had to stop because the school told us that since it wasn't 'approved' technically he was skiving school and could be expelled.......more joy.

I know about the team work though. One year I had 21 'holiday' gifts to produce on a budget.......that's why I need to make all those dishes!