Friday, November 19, 2010

29-Week Appointment and Object Focusing Issues

Just got back from my 29-week appointment to follow-up from last week. Finally didn't gain weight in a week (phew!), glucose test was fine (thank goodness), and still measuring only 2 weeks ahead (glad it's not increasing). The OB I saw this time was not concerned much about the measuring ahead and said the most reassuring thing was how much Emmett is moving. He said, "you KNOW that if this was another Prader-Willi baby, he wouldn't be moving this much." He's right. Emmett was kicking me so hard today that I was lying on my back and my whole belly and parts of the rest of my torso were moving. He's a strong little boy! Just to check, they're going to have me do an ultrasound around 32 weeks to see how things are going, measure fluid, etc. I'm glad he suggested this and honestly, I probably would have asked for one anyway just for peace of mind.

Focusing - we have noticed that when working on tasks that involve fine motor skills, Dean often does not look at the object he's playing with. Rather, he focuses on the therapist or us or whoever is nearby. Obviously, it's a lot more difficult to do something like putting a stacking ring on a stacker if you're not looking at the stacker. Occasionally we can tap the object to direct his gaze towards it or look there ourselves and he'll focus. Rarely, he'll focus on his own. But he often doesn't and gets frustrated about it. Not sure what "it" is, if it's that he then has trouble doing the task or he's frustrated that we're trying to redirect him or what.

I posted about this on a PWS email list and got a whole ton of responses from people whose kids do the exact same thing. Curious what this could mean. One thought is that it's related to vision and getting their cute little brains to focus eyes, hands, fingers, ALL of it in the same place at the same time. Most people don't realize that this takes a lot of coordination to do this. Dean has an ophthalmology (I always have to think about how to spell that :)) appointment on Tuesday to check on some minor eye-crossing/googly-eye behaviors and so I'll ask about this as well.

The moral of the story? First rule of PWS Fight Club? Low tone affects practically everything, since you have muscles all over your body. Craziness.


Kevin said...

FWIW, Sarah had a wandering eye condition when she was younger, then after 12/12/2001, she lost all of her depth perception. She could see out of either eye, but not both at the same time. She had surgery a few years ago to loosen up some tendons and she had depth perception for awhile, but she has lost it again. She said, "the side walk came up and I thought that it was going to hit me". She also has a blind spot on the left side.

Ali Foley Shenk said...

Did Sarah ever try vision therapy? We've heard some say it's really helpful and some say it's useless.

That would be really freaky to lack depth perception!

Kevin said...

She had exercises that she had to do like moving a pencil ever closer to her nose while trying to keep both eyes focused on it. I don't know about "vision therapy".

In general, the accident made many small problems that Sarah had greatly magnified. A bad temper, lazy speech,
hoarding, collecting, phone phobia, etc.. She has made great progress with these things in the last few years despite the "window of healing" talk of the doctors she saw early on. Thanks that she was directed to the Michigan clinics.

Anonymous said...

Hi Ali, It's Bretagne from Annapolis, mom of Aaron. Aaron does the same looking away thing and I think i is b/c he gets sensory overload and that is his way of dialing back a notch. I am wondering which PWS parents site you are referring to that you got so many responses from? Happy Thanksgiving to you and yours.

Ali Foley Shenk said...

Hi Bretagne!!!

I posted about it on my blog page on Facebook, as well as sent out an email to the HolisticPWS and PWSA(USA) 0-5 year old email lists through Yahoo. Are you subscribed to those?