Wednesday, January 9, 2013

Sie Center Visit

I always look forward to our trips to the Sie Center for Down Syndrome here in town.  The visits usually make for a long day (this time, especially, since Piper had her check-up with the ped right afterward), but we get a lot done, see a lot of people, and leave with a lot of information. 

I (and Piper!) usually enjoy our visit with the fabulous Pat Winders the most; we always leave her with new tips and tricks for The Big Next Thing.  This time it’s more distance pedaling on the trike.  Piper could do at least three pedals on her own before she got distracted.  She showed off with her ability to walk up and down the back corridor stairs (several flights!) without blinking an eye.  She ran and ran and ran; Pat was thoroughly impressed with her speed and her “advanced gait” for running.  She, of course, didn’t need to tell us that Piper’s fast.  At least when she wants to be.  She jumped on the trampoline, climbed in the rope room, and snuck up the slide.  She did get a prescription for arch supports, called Hot Dogs, for her to wear in a pair of tennis shoes when she’s really active, like long trips to the zoo.  She said that it should help with fatigue, and just help her slightly flat feet.  Sounds good to me! 

We also saw the speech therapist.  I don’t usually get any new information from this part; pretty run-of-the-mill and information we already knew.  Still, it’s nice to have another set of eyes to make sure we’re not missing anything obvious.  We left her with a new diagnosis- “Mixed Receptive/Expressive Disorder.”  Meaning that she understands WAY more than she can say.  No big surprise there- it’s been that way since day one.  It is nice, though, when someone else can see how much she actually understands.

Last, we saw Dr. Hickey, who’s in charge of the clinic.  He’s never spent a whole lot of time with us- usually less than 15 minutes.  He always says that he loves our ped (and this time he said that she’s who he refers everyone to), so I kind of figured that it’s because he knows we’re in good hands.  And also that she’s never had real significant health issues to discuss.  This time, though, he spent a good 45 minutes with us.  He started out going over her development.  To sum it up, he said “Whatever you’ve been doing with her, it sure has worked!”  He watched her play, watched her interact, and watched her communicate.  He said several times that she’s “age appropriate” in her language (not speech) and cognitive skills.  Coming from him, I took it as a huge compliment! 

But what took most of our time with him was discussing Piper’s “little” pneumonia episode this fall.  He was pretty concerned about it for several reasons.  First, kids shouldn’t get sick at that time of year.  If it had been now, in the middle of cold/flu season, he wouldn’t have thought so much about it.  Second, her swallow study was clear.  He said that even the notes of the study said that everyone expected it to be abnormal.  Third, she was so sick.  I don’t like it when the phrase “severely ill” passes a doctor’s lips so many times in a single conversation.  And, finally, because she has the underlying airway abnormalities from the intubation trauma.  He suggested we see pulmonology, just to get their take on it all.  He couldn’t figure how she’d never been sick before, but be able to get that sick that fast.  Her preemie airways could, potentially, be playing into this, but her lungs should be mature at this point. 

Piper’s motor skills, in all areas, took a major plunge when she was sick.  It took a while to get her stamina and coordination back, but it was quickest.  Speech has been slow going at school, but at home she’s been back for several months.  Fine motor, however, took a severe tank.  I blame part of it on the fact that she wasn’t able to bend her right arm for two weeks because of the PICC line.  She learned to make do with her left hand, and then forgot which one she was supposed to be using.  I talked to her OT at school and begged her not to let Piper use her left hand- she’s a righty, and if we taught her to be a LEFTY, she’d be really screwed up.  She still hasn’t gotten back to using an appropriate pencil grasp, but she is mimicking marks slightly better than she was right after she got sick.  It took a good four or six weeks to get her to use her spoon and fork as well as she had been (without us reminding her to use the right hand.)  This, of course, got us a referral to the occupational therapist who’s attached to the center.  But, the interesting part of it all, is that, apparently, when a kid is “severely ill” (there was that phrase again), it can affect two areas of he brain- the part that controls the fine motor skills and the part that’s in charge of visual-spatial skills.  Although there’s not much research on it, he thought that was probably the case with Piper, and that it’ll just take a while to get things back working the way they should be.  I’m excited/nervous to see this OT; I really want a referral to someone who could see Piper once a week, because I really think she needs it.  It’d be really nice if we could just see her!

So, in short, we got referrals to 16 hours worth of appointments for the month of January- a three hour pulmonology visit, a three hour OT assessment, and an overnight sleep study.  Wish us luck!



  1. i want to live where you live. i'm am so jealous of the wonderful care your girls receive.

  2. We got some "homework" after we left the Sie Center too ;) Sounds like in spite of it all, Piper is still doing really well. Miss you guys, it's been far too long!