Thursday, January 27, 2011

A big day at Shriner's

I know it's been a while since I've blogged, but not much has been going on around here.  Just Emma being her cute, smiley, funny, nap-fighting self.  And then...BAM! We went to Shriner's.

Oh, quick note - when Emma went to therapy on Monday afternoon, they didn't let my mom or Mama Jan go back with her because she's going through some separation anxiety.  So instead, Emma cried for 45 minutes.  I'm not really sure how that's productive, but whatever.  They apparently put Emma in a stander for a little while...and now on to the Shriner's appointment...

Emma's Shriner's appointment on Tuesday was supposed to be a pretty routine (or so we thought) appointment with Dr. Pete, the orthopedist.  The primary reason we were there was for him to check on her right foot - it has the tendency to point down and in.  He said the #1 thing we can do for it is to stretch it the opposite direction - up and out; #2 is getting her standing in AFO's (ankle-foot orthotics); #3 is surgery to clip the tendons along the back of her heel (surely not the big Achilles tendon, but no need to worry about that now).  So #1 is accomplished easily enough.  #2 is what occupied the rest of our day.  (Emma's appointment ended up lasting 4 hours.)  Dr. Pete thought at first that Emma would need a parapodium - I had never heard of this before, as most kids are in standers.  I'm still not sure I know the precise difference, but I'm sure I will soon...I have some ideas, but, again, not something I need to worry about today.  Here are pictures of the two...first, a parapodium:




Next, a stander:


No offense to those kids, but I'm pretty sure that these apparatuses look much cuter when there's a little blond-haired, blue-eyed girl with glasses and a bow in her hair standing in them.

Anyway, Dr. Pete had one of the Shriner's physical therapists come down to get her second opinion on whether Emma should have a parapodium or a stander.  This therapist was WONDERFUL, and, long story short, she spoke with Emma's weekly therapist.  The two of them decided that Emma should probably get a stander and that we need to wait a couple more months.  Emma's not the best at sitting on her own, so she needs to be able to do that first.  Part of her problem is that her fat knees won't bend, so it's a little harder for her to balance sitting down.  Don't misunderstand me - she CAN bend them, but it's difficult when she sits because they're so chubby!

The other big event of our Shriner's visit is that we got Emma fitted for her AFO's, and they'll be in in two weeks.  Here's a picture of what AFO's look like:



As you can see, they will fit over her feet like a boot to kind of bend her feet and ankles to the correct position for standing.  However, Emma's will not be white - they will be dalmation print with pink straps, of course.  They didn't have a great number of options to choose from, but my daughter HAS to have a little pizzazz.

I'm going to start going to physical therapy and occupational therapy once a week.  Emma has it twice a week, and my mom and Mama Jan take her.  But I think it's time that I start going, too, to keep an eye on things and see what exactly they're doing with her.  I may be able to give them a little input on how she's developing, too.  Now that things are getting serious (AFO's, stander, REALLY working on unsupported sitting), I just feel like I need to be there.

Ich, after all that medical talk, we need to lighten it up a little - Emma is babbling a lot now.  All kinds of sounds are coming out of her mouth.  The most common one is Mamamamamamamama.  Ha.  If she's going to be a daddy's girl, at least her first word will probably be Mama.  She says Dada, Mama, Nanananananan (which we hope will be Nan), but she doesn't identify us with those words yet.  She's semi waving (my mom believes more than I do that Emma knows what she's doing when she's waving), and she's pulling her glasses off the instant she realizes that they're there for her enjoyment.

Now I need to plug something.  There's a school here in Greenville County called The Washington Center.  This is a center for physically handicapped and/or mentally handicapped children in Greenville.  Not ALL handicapped children go there, just the ones who need a special facility.  And it. is. amazing.  The staff are simply wonderful, and the kids are a true inspiration.  You won't see as many smiles in a regular (and bigger) elementary school than you will see on the faces of the kids at The Washington Center.  If you're from around here, you may know that our District's budget has been cut by 10's of millions of dollars over the past few years.  That affects all kids, obviously, but it really makes me sad that it affects THESE kids.  The Washington Center PTA has started an annual Walk N Roll event in April.  This year it's April 9 at ICAR in Greenville.  I assume it will be similar to Walk N Rolls of years past: (1) it's a one mile walk/run/roll, and all proceeds will benefit The Washington Center; (2) registration includes a t-shirt; (3) Carol Goldsmith hosted it last year.  I'm not sure how much registration is.  I am impressed by the transparency of the PTA - they actually announce the grand total of the funds they raised (believe me, this is rare for a PTA to do).  Last year, they raised around $24,000!  So please mark your calendars for April 9 and come walk a mile for a great cause...I promise you, seeing these delightful children is worth so much more than the money you pay and the steps you take.  Keep going to The Washington Center website as it gets closer to April 9 for updates.  They also accept corporate sponsors.  We are planning on being there, too, of course, unless Dr. Troup decides it's surgery time.  Here's a snippet from their PTA newsletter about the uses of the funds:

With last year’s success of its 4th annual Walk n’ Roll, we were able to supply crucial funding for our school this year. A record nine grants were awarded to teachers for special projects in their classrooms. We were also able to allot each classroom $150 for supplies for the new school year. In addition, the PTA board determined that each child’s class would receive a $40 per child funding allotment for activities throughout the school year. The PTA also provides funding for buses, staff appreciation, office support, and other vital and one-time projects.  As you can see, our Walk n’ Roll event in April is of the utmost importance!

In closing, here are some pics of our little cutie:



Yep, still just two teeth since September.




Maybe I'm partial, but I think she looks like a china doll in this picture.

1 comment:

  1. MB, I love the last picture of her! A lot has been going on since you last blogged! SHe will be adorable in the dalmation AFO's! I keep ya'll in my prayers and I have already put down the 9th! Love to all!!!! Holly

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