Why It's Worth It

We have spent a lot of time on Lillie’s health issues and we even had some spit-up and vomiting issues on Friday into Saturday.  She’s feeling much better, now.

Today was something different, altogether.  Lillie has been back on her full strength formula since last night and up to full volume and speed today.  We would like to get her out more so, when we were invited to meet family in San Marcos for lunch, we jumped at the chance.

Now, as many people know, when taking a small child out to a restaurant and shopping there can be a host of behavioral issues.  Nothing horrible, just tired and cranky, complaining because of the heat (this is Texas) and the like.  After a couple of days of being sick, we didn’t know what to expect.

Here is what we got.  Lillie was an angel the whole time.  No complaining, just quietly playing with her toys.  Everyone noticed how well Lillie was doing, even impressed with her development.  This was her first trip to a restaurant using a high chair and she sat up the whole time.

After lunch, we walked around an outside mall – San Marcos Outlets.  She was perfect.

We are constantly impressed with our little girl.  All her health and developmental issues.  All the extra things she has to do just to try to try to catch up because she is so behind.  Three therapists, 15 specialists, multiple hospital visits and the constant feeling that it is so unfair she should have to do all of it.  It is the little things like having a perfect day out with her aunt, uncle and cousins that brings so much joy.

Why is it worth it?  Her smile, our smiles.  Her laughter, her energy, her can do attitude.  Her.  Lillie.

Lillie’s worth it.

The Mysteries of Lillie Hines

As we’ve already described, Lillie is a kiddo with complex medical and developmental issues. And, for the most part, we’ve adapted to being her team captains pretty well. We have put our organizational, phone (so many calls!) and social skills (tip: ALWAYS be nice to nurses) into overdrive and have found a way to keep her appointments, therapies and tests almost straight. Then there are the mysteries…

Every month or so, a new issue seems to pop up out of the blue. Maybe it is something that has been lurking around, like frequent spitting up, but does not immediately make the ‘to do’ list. Or maybe it is sneaky and is mislabeled at first. Case in point – Lillie’s hair is duo-tone. No, really. Basically the right side of her head has golden blonde hair and the left side is a sweet light brown.

The first time we noticed this was about a year ago after a long hospital stay – a stay that included a continuous EEG test, which involves 24 rainbow-colored wires being attached to your baby’s head with adhesive. While Lillie did not seem to mind her special hat, the aesthetic aftermath was dramatic – delicate wisps of hair clumped and standing straight up covered in glue. Imagine something between rubber cement and Elmer’s.

After the test, mom and Aunt Suze temporarily transferred their medical stress into a “fix Lillie’s hair” obsession. They asked nurses, googled relentlessly and attacked the problem from all angles brandishing pads of hospital-supplied adhesive remover and Q-tips dipped in nail-polish remover. It was a delicate process, and after a lot of time and effort, it seemed to work.

Then, imagine mom’s surprise about a week later when she noticed the remedied hair was a little darker on one side. Looking closer…oh my…is it really? Two different colors?!

Time passed and we tried a few things to even things out – fresh lemon juice anyone? – and we encouraged her roots to pop up in her natural color the way you might talk to plants to make them grow. Then some members of Team Lillie started to wonder – was it really from the EEG goo removal? Or could this be another special Lillie trait related to her chromosomal anomaly? Mom, still guilt-ridden for “ruining my baby girl’s beautiful hair,” could not be convinced. Hours were spent pouring over newborn photos, squinting to find evidence of the first blonde-brunette appearance.

On this Father's Day, we should note dad’s reaction to all of this:  You want to do what to her hair?!  No, you may not shave it! Don’t worry Lil, daddy has your back.

Happy Father's Day

And yet, like many other far more important Lillie mysteries (e.g., her vision, future mobility, communication potential), only time will tell. So we do everything we can. We grow proud of her fashion-forward hair. We get her all the help she needs. We use our advanced sleuthing skills to solve all the puzzles we can. We work on staying in the moment. And mostly, we love her while we wait for her to reveal the answers of all her mysteries to us in her own time.

What is Old is New Again

There are a few new things and activities in Lillie World now.  We’ve added a large piece of furniture and brought back some toys she couldn’t use before.

The new furniture is a big bean bag chair.  I know, I know, it’s a bean bag chair.  But this is not your childhood bean bag chair.  We got it from a company that makes bean bag furniture (couches, love seats, etc.).  We wanted something for a second person to sit on in Lillie’s room during our frequent “team meetings.” There is only one chair in there and the floor definitely does not pass the comfort test.  The new chair has what seems like buckwheat at the base – yes, there’s a top and bottom to it – and pieces of comfortable foam on the top.  It has a brown, ultra-suede cover to put it in.  We like it, although Lillie isn’t really sure what to think.  She has a hard time moving in it, but it makes a great picture.

We also brought back the bouncy chair and activity center that Lillie couldn’t use until now.  What is old, is new again.  Lillie has some curvature in her spine and  it can cause balance issues.  She also had a hard time holding herself up for any prolonged period of time.

Thanks to the tireless efforts of Team Lillie, she can now hold herself up for a while and actually use both of the toys.  She needs a little support for her ankles while in these.  We were told not to immobilize her ankles but, give her a little help.  Her mom found her pink Chuck Taylor’s to use while playing.  I’m not sure she could use them to learn to walk in but, they’re perfect for this.

More stuff for her to play with and exercise in. Lots of progress to report on all fronts.

Oh, and her palate is healing very well.  We watch Lillie play with the roof of her mouth with her tongue.  I can’t imagine what it must be like to have that cleft closed, it must be a little weird. 

Dad is home from work the first part of the week and has Lillie on his own for most of that. Grandma Bette is out of town until Tuesday night and mom has to travel some for work.  Looking forward to a bunch of Lillie time this week.

Lillie World

Lillie World is what we have taken to calling her room – she is growing up so quickly it does not even feel like a nursery anymore. Logically, we know it is just a small bedroom in a house we are renting for a couple of years. But it has become so much more than that; it is the heart of our home.

Practically speaking, it is where we almost always feed her (5-times a day) through her g-tube, where she sleeps, where her therapists stretch her out on the floor and try new exercises, where we play and often where Team Lillie huddles singing her favorite songs when she is having a tough time. “Head, Shoulders, Knees and Toes” and “Yellow Submarine” are two of her favorites.

It is filled to the brim with a comical number of toys, books, and family keepsakes – including pictures by grandma Juli and some of her mom and dad’s favorite childhood goodies. Not to mention a closet embarrassingly full of adorable summer attire and comfy jammies. (Some might say mom and grandma Bette have shopping ‘issues.’)  Almost all the toys have names: Dell, Davy, Blue, Monroe, Sketti, Q-Bert and more.

With no discernible design theme, all bright colors are welcome – especially hot pink. Looking around, there is a slightly higher proportion of owls and flowers than might occur naturally, but not quite enough to feel planned. The extra large yellow rocking chair that sits across from the crib is a little worn and almost always occupied. You can imagine, then, that it is a little busy in here. But somehow, it all just works.

This is also the place we anxiously set-up when she spent 17-days in NICU, asking just that we got the chance to bring her home. Where we have seen her make slow, steady progress and where we have consoled her, and ourselves, when times have been tough. And it is where we love to bring her back after adventures in the hospital, doctor visits and trips to the duck pond.

So, here is to Lillie World - the kookiest, craziest, best place we know.