Waiting for Shoes

It has been too long since we've updated you all on how our darling girl has been doing. When I really think about what has been keeping us from posting, it seems to me that we have been waiting for more shoes – not just the ‘other’ shoe (we’ve learned there is an endless supply) to drop.

Over the last nineteen months, we’ve faced so much and stretched our lives into Gumby shapes so often, that a short period of what you might consider normal is actually kind of…freaky. Don’t get me wrong though – we are definitely willing and hoping to get used to it.

So, here is a rundown of the things that have been keeping us busy but not crazy lately…

·         Lillie is getting tall. Our former preemie princess is catching up on her growth charts nicely and seems to have gotten her long legs from her mom. She is still working on her physical development, so she doesn’t walk yet, but when we help her stand we are all amazed at how big she is getting.

·         Her vision is improving. We just had an appointment with the ophthalmologist a few days ago and he is very happy with the progress she is making with tracking and seeing overall. At this point, he believes she is near-sighted and will need glasses someday but her optic disc hypoplasia will not cause her to have profound vision loss. The way he explained it is that the information should get from her eyes to her brain, so it will depend on how she develops neurologically to determine how much she can recognize visually in the long term.

·         She’s eating and drinking more. After her last hospitalization, Lillie started taking a new medicine to help prevent vomiting episodes and it also causes increased appetite in many kids. We are pretty sure Lillie is one of them. While her main source of nutrition is still a toddler formula through her g-tube, she is now eating 3-4 ounces of purees every day. And she loves drinking water so much we have a hard time pacing it so she doesn’t take more than she can handle.

·         We love her new clinic. We were truly blessed to have a wonderful pediatrician on team Lillie for her first year and a half, but it has also been wonderful to be a part of the new pediatric clinic that is designed to care for kids with complex medical issues like Lillie. She has been sick a few times in the last couple of months, and they are always available to work through it with us over the phone so we don’t have to bring her into the office or even the hospital in the middle of a vomiting episode, for example. It makes a big difference.

·         Lillie likes to kiss! Best of all, one night recently Lillie decided to kiss her daddy back when he was busy lavishing her with attention. Now she is turning into a pro – when she’s in the mood, of course. It’s hard to overstate how important this simple act of reciprocating affection is when you don’t know if your baby girl will ever be able to say “I love you” back.

 

Including a picture here so you can all see how great she is doing and how big she is getting. Our special princess makes us very happy.

 

 

 

A Few Fun Things About Lillie

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.