Tuesday, April 23, 2013

Almost Four!

It's hard to believe, but in one week, Lily will be four years old!  And, of course, that makes me stop and realize just how far she has come.  Yesterday, I sat in her IEP meeting for the next school year.  I was so proud of her and her accomplishments.  Honestly, they are quite astounding!  

The teachers and therapists kept saying that she is one of the happiest children that they know.  The PT even said that she sees Lily on Mondays and that always makes her week.  The other therapists agreed.  I beam when my children are happy, but Lily's happiness is special because it shows that she is anything but "incompatible with life."

Lily's speech therapist met me last week when I picked Lily up from school.  She wanted to know how Lily communicated at home.  I gave her as many examples as I could think of, one being that the other day, Lily was sitting beside me on the floor as I was reading.  She reached over and patted me on the arm a few times as if trying to get my attention.  Of course, she got it!  When the therapist heard that, she was amazed!  Lily did the same thing today while I was feeding Aria.

As for school, we are going to try to give Lily three full days and work up to five full days.  This year, she goes two days a week for roughly three hours.  Our goal has always been for Lily to attend school full-time when she turned four.  With an aide in the classroom attending to Lily, that makes our goal much easier.  

And I can say that I believe the improvements that Lily has made this year come partly from the extra that she is getting at school.

Speaking of improvements, this is what Lily is currently doing:
  • Choosing toys.  We hold up two and ask her which she wants.  Sometimes, she doesn't choose anything, so we have to get two more toys.  (The fact that she's playing with toys is amazing.  There was a time when they didn't interest her.)
  • Recognizing toys.  The other night, Dave held up two toys and asked her to get her slinky.  Lily felt the other toy, then moved her hand over and grabbed her slinky!  She loves that toy!
  • Tasting more.  I usually give Lily Aria's leftover baby food to taste.  I'm happy to announce that Lily accepts each "flavor" and takes tastes.  She likes to bite down on the spoon.
  • Crawling!!!  OK, so it's her way and a little on the nontraditional side, but she can make her way across the floor at least five feet in less than a minute.  I've seen her take alternating arm forward, leg forward two times in a row, but then she stops and sits up on her feet.  To me, this is amazing because she is able to coordinate a crawling movement, which is not easy.
  •  Weight-bearing.  In a crawling position, Lily can lift one arm up off the floor and hold herself in that position with her other arm still on the floor.
  • Pre-self-standing.  Lily's OT, and more recently her PT, work with her on trying to get herself up off the floor.  While in a crawling position, they move one of her legs so that her foot is flat on the floor, knee off the floor.  The point is to push up with her arms and legs to a standing position.  Lily's PT has said how you show Lily how to do something and she gets it.  It might take a little while, but she gets it.  Lily now does this on her own--leg up, foot flat, knee off the floor.  She's not strong enough to get into a standing position on her own, but her PT is showing her how to use the couch to help her.  That and the pulling up that she's doing (see below), she may just be able to put herself into a standing position one day!
  • Bear stance.  She's only done it once, but Lily put herself in what is called a bear stance.  Basically, think "downward dog" yoga position.  (I told you she could be a yoga instructor!)  She held herself in that position and then collapsed on the floor. 
  • Pulling up.  I've only seen her do this twice, but she's gone to our table and to our rocking chair and grabbed and pulled up.  Not into standing, but to where her body looks like a letter L, so she's on her knees, but she's not sitting on them.  Her behind is off the floor and straight with her back.  She does this a lot when she's around us.  Her school PT said that she is building her core, which should help her with her balance, which should also help her with walking.
  • Facilitated walking.  I can remember being at our old place and allowing Lily to stand.  She's always loved standing!  So much so that now, when I try to sit her down and she wants to stand, she stiffens her legs and throws her body forward, letting me know that she does not want to sit.  I can remember holding her under her armpits, moving her body so her legs would take their steps, giving her as much support as I could while trying to help her gain strength so she could support herself.  Then that amount of support lessened.  Then I started holding her at her elbows with my fingers extending down her arm.  Then I supported her between her elbows and her wrists.  Tonight, we walked together for about ten minutes where I let her hold my thumbs.  I gave a little support with my fingers, just in case I needed to catch her quickly, but understand that that is such a minimum amount of support!  As a matter of fact, last night, she had a jacket on, and I held her jacket closed tightly around her with one hand and held only one of her hands. . .and she took steps!  The therapists at the IEP meeting told the teacher that she better watch out, Lily may come to school walking next year.  While I'm not sure that will happen, they do realize her drive, saying that she perseveres, and anything is possible with her.
 I'm so amazed by this little girl!  From the beginning, I've wondered what she would do.  I wondered if she would smile.  She did!  And that seemed enough.  Then she would do something else.  And that seemed enough.  And then it grew to more.  And each time, when she would reach what I considered the final boundary, she would push through it and move on to the next.  While in my heart, I know she will walk (because she just has that drive to do so!), my brain tells me to be realistic in that she probably won't.  

But when I speak to Lily, I speak with my heart, and that's what she's listening to.  She never hears a word my brain says.  She knows what I know she can do, and she's trying her best to do it.  If she doesn't, that's no big deal.  I think she's done quite a lot for someone who's had a list of negatives labeling her and her condition.

***I also wanted to share that Rani was recently accepted into the Dental Hygienist program that she applied to!  Because this is Lily's blog, I don't talk much about my other children, but I'm so proud of Rani for the hard work she put into getting in to this program and for being accepted that I just had to share!***


  1. I think she is going to walk! She is an amazing child.

  2. Lily is just amazing! I'm so blessed to have met her, even though the circumstances were so sad. Give her a hug for me!- Lisa