We have spent many posts talking about Lillie's medical issues and
development. This time we wanted to tell you some things about Lillie as a
kiddo. Below are a few fun things about our special girl. She is...
1)
Fierce – Think you’re tough? We thought we knew tough. With all of the obstacles that Lillie has to
face on a daily basis, we can only be impressed at the progress we have
seen. Slow and steady, constantly
pushing her limits.
2)
A Princess – Center of the universe? You bet.
If we forget, she reminds us, no worries there.
3)
Opinionated – Little girl knows what she
wants. She doesn’t always know how to
tell us what it is due to her communication difficulties, but she will tell us.
4)
Hates mornings/Night owl – Lillie wakes up
between 6:30 and 7:30 each morning. She
stays awake for a couple of bleary eyed hours then takes her morning nap. She wakes up around noon or so. Now she’s ready for exercise/play/therapy and
anything else we can do with her. No naps
the rest of the day. In fact, she will
now be up a while. She may fall asleep
for the night at 7:30 or 8:00 – if we’re lucky.
Usually, we have to give her “sleepy medicine” (neurologist prescribed
Clonidine, not a shot of bourbon) by 10:30 so she will fall asleep by
11:30. She loves to be up late.
5)
Hair Grabber – Mom has long hair. Perfect for hair pulling fun! If mom forgets to tie back her hair, a game
is born.
6)
Squiggly – Lillie doesn’t get to move too
much. She doesn’t crawl or walk,
yet. She gets from point to point when
we move her. This does not allow her to
use up all the energy that kids have.
She doesn’t wear herself out by moving around so, she will lie in a lap
and squiggle. She does what has been termed
“booty lifts,” twist, turn or bend in half.
Not easy to hang on to. We
have also discovered the indestructible mobile.
She has been kicking the base of her mobile really hard since we bought
it. The fact that it still works is amazing.
7)
Cuddly – Lillie loves to be held. Recently, she has been telling us not to put
her in her crib-loudly. She has also
started to snuggle into our shoulders and use her arms to hold on. Yes, we’re loving it.
8)
Happy – While this post is being written, Lillie
is in mom’s lap for her feed. She’s
laughing and squiggling around. It’s
kind of hard to write while all this fun is being had without me. Think I’ll take a break.
9)
Hard Worker – Therapies, practice and play. Lillie takes them all pretty seriously. She will do just about anything she is asked
and make you proud. Okay, a little less
seriously if she’s too tired. Give her a
break; she’s not quite 18 months old!
Having said that, she has figured out how to fake being tired so we
stop.
10)
Focused – We’ve noticed when Lillie is playing
with her toys or just with her hands, she can get very focused on them. She has been known to concentrate on a toy to
see what she wants to do with it. For
example, Lillie has a rattle that looks like a flower with a ball in the base
that you can see into and touch the ball.
She has spent a lot of time trying to figure out how to get the ball
out. She can’t, but don’t tell her that.
These are just a few of the things that make Lillie truly special. The one thing not listed is that she is
loved. How could you not love this
kiddo? We can’t wait to see what Lillie
teaches us and learns as she grows up.
What an adventure we will have together.
