Sedated or Elated?

In our last post, we mentioned Lillie was going to the hospital for a series of tests.  Over the last several months, different members of team Lillie told us about exams they wanted to do that were important, but not urgent, and recommended that we bundle them together and schedule them all in one day to avoid multiple sedations for such a young kiddo.  We got help arranging all of the doctors and collecting all the paperwork by a nurse at Dell Children’s Specialty Care Center (thanks Mary D.!), which really helped, but we were still nervous about the day and what news it would bring.

So, on Tuesday mom, dad, Lillie and her grandmas headed to Dell so she could be sedated for a full eye exam, CT, MRI and ear tube placement (her second pair, slightly bigger than last time).  A hearing test was also planned while she was out, just after placing the ear tubes.
The reasons for the exams were many.  The ophthalmologist wanted to get a good look at her eyes because something was odd with her optic discs.  He couldn’t tell just what it was so, we set up the test.  The orthopedist knew Lillie had a few hemi-vertebrae which has caused scoliosis.  As a precaution, he wanted to see if her spinal cord was being affected.  Ear tubes are pretty common for kids – especially those with cleft lip and palate.  Fluid builds up in the middle ear that needs to be drained so they put the tubes in to help.  Lillie had never passed a hearing test, possibly due to the fluid, so we needed another one of these as well. 

Here are the results, in the order we got them:

The ophthalmologist took his pictures of Lillie’s eyes and optic nerves.  The concern was the connection between the two.  While he did find the connection to be abnormal, it was recognizable as Optic Nerve Hypoplasia.  Her optic nerve is about 20 percent smaller than normal when it reaches the eye.  Believe it or not, this is good news on two fronts.  First, it is a diagnosis.  With Lillie, we have been through enough “wait and see” and “Lillie is unique,” to appreciate definitive answers.  Second, most of the associated complications that come with this diagnosis have already been ruled out by numerous tests and visits to proactive members of team Lillie.

Her ENT then placed the ear tubes and noticed the inner ear looked good and mostly fluid free.  When she finished she met with us to tell us it went well and also to warn us that if this hearing test had similar results to the last one, we would need to get Lillie a hearing aid for at least her left ear.
So, we tensely waited while the audiologist administered the Auditory Brainstem Response test.  This test evaluates how well sounds travel along nerve pathways from the ear to the brainstem.  This is done while kids are sedated and determines the softest sounds their ears can detect at various pitches.  As we said, Lillie has never passed a hearing test of any kind.  To our – and the audiologist’s – delight, Lillie passed both ears with only a moderate deficit in the mid-range.  This could be a result of the ear tubes (they can absorb and deaden some tones) or an actual deficit.  But she assured us that Lillie can hear everything we say to her, which was music to our ears.

Last but not least was a CT and MRI of Lillie’s spinal cord.  Both tests were done because the CT does a better job with bone mass and the MRI does a better job with soft tissue.  Doing both gives a more complete picture of what is going on.  And we got one.   We found out a couple of days later that there does not appear to be any abnormalities affecting Lillie’s spinal cord.  She has the hemi-vertebra and curvature of the spine we already knew about, but no spinal cord issues.  While she has had no symptoms, this is a huge relief.  Confirmation is as much for our peace of mind as anything else.

Basically good news all around.  There are still some big “wait and see” issues (How well does her brain interpret images and sound now that we know it gets there? How impaired is her vision?) but this trip was a definite success.

We need more visits to doctors and hospitals like this one.  They are too rare.

Firsts and Nexts

Lots of good firsts for Lillie the past couple of weeks.  We thought we would share them with you.

Lillie is now 16 months old.  As we have mentioned, Lillie has been delayed in her development but the good news is that in the last two weeks we have seen some significant progress.

Lillie has been trying to roll over more.  She still hasn’t quite gotten the hang of completely turning over but she keeps trying.  If only that one arm would get out of the way, she would make it.  She is also doing more practice eating – not enough to count as nutrition but her swallowing seems to be coming along pretty well.  Now that the cleft palate is closed, she’s definitely having a better time.

Lillie is also now able to sit up on her own for 20 to 30 minutes on the floor with no extra support.  She is even starting to play with her toys while sitting, so we know her balance is getting much better.  She is not tripoding too much and is starting to learn to catch herself when she falls.

Lots of progress the last couple of weeks.  We are even being told by all of her therapists that she is making slow and steady progress.  Lillie rocks!

Next up, on Tuesday, she will have a bunch of sedated tests at Dell Children’s hospital.  Lillie is going in because several of her doctors want to check on a things that require her to be sedated at her age.  Here is the list:

Ear Tubes and Hearing Test:  She needs to have a larger set of ear tubes placed.  This was supposed to be done when they did the palate surgery, but there was a scheduling issue that prevented the ENT specialist from being there.  Lillie has never fully passed her hearing tests.  We know that her ears have normal structure and that each ear works, but there is still some question about whether there is some diminished hearing that needs to be addressed.

Pictures of Her Abnormal Optic Nerves and Eye Exam:  We know Lillie has some vision issues.  She can’t tell us what they are but, there is evidence that she does.  The ophthalmologist said her optic nerves are abnormal.  Lillie being Lillie, her condition is unknown to him.  He wants to take pictures and show them to his colleagues to see if anyone else has seen it.

CT and MRI of Her Spinal Cord:  The orthopedist wants to check her spinal cord.  Lillie has a few hemi-vertebrae which causes her scoliosis.  He wants to be sure the spinal cord is not being affected.

There you go.  All caught up on Lillie’s goings on.  Sorry we missed you last week.

Wish us luck on Tuesday.

First Family Vacation

Taking your first family vacation with a special needs kiddo can be pretty intimidating. Especially when the only overnights you have attempted were either at a hospital or a pediatrician’s house (in our case, Aunt Suze’s).

So this weekend we finally decided to take the plunge with a short getaway to a resort about an hour from home. And we are so glad we did. We all had a great time and we even learned a few things along the way…

The top five things we learned on our summer vacation:

1.       Don’t make a list. It may sound a little counter-intuitive when you have the task of packing up clothes, diapers, formula, medicines, syringes, g-tube supplies, toys, books, pack-n-play, and swimming gear, but it actually works better to look through rooms, drawers and shelves and set everything aside as you go. Writing a list – for us – provides a false sense of security and leaves room for that one key item (food pump anyone?) to be left behind. Instead, a visual scan provides the opportunity for the ‘duh’ reminders of those few things you just cannot replace on the road (favorite toys, prescription meds, you name it).

2.       Eat outside. While it is not always possible, finding a nice restaurant with a patio area sure does lower the stress level for parents (read: mom) who do not want to bother people or worry about how far Lillie can toss her toys when she tires of them. It also leaves more room for parking the stroller, which usually works better than getting a high chair that she may or may not be able to safely balance in.  

3.       Play musical chairs. Or tables. Or beds. In other words, feel free to rearrange the hotel room to fit whatever your family’s special needs might be. For us, it meant spending some time the first night adjusting things here and there and a relocation of an exceptionally heavy small side table each night. But it worked and it gave us a sense of normalcy when we had to handle routines like feeding time.

4.       Don’t explain. Being out and about with Lillie this weekend, we felt  really proud. Mostly of her and how wonderful she behaved and how much fun she was having. But also of our family and everything we have done in the last year or so to get to this point. That being said, we are used to being  around other members of Team Lillie – and not strangers who do not know about her challenges or why she might not be ‘acting her age’. But at the bayside when her dad held her up so she could dip her feet  in the water, we did not feel the need to explain to the chatty parents nearby why she was not walking and talking like their little tike. At the restaurant, we did not go into why the stroller was a better fit for her than a high chair. When offered, we took the crayons and coloring paper with a simple ‘thank you’. It was nice. We were so proud we knew Lillie needs no explanation.

5.       Count on a meltdown. Finally, no family vacation is complete without one massive disturbance in the force that will result in a long, very loud, possibly spit-up induced breakdown. We were really lucky that Lillie’s came at the last minute – the morning we were packing up. But it was a bad one and as much as it sucked, we handled it just like we would have at home and, still high from all the fun we had been having, got over it pretty darn fast.

All in all, we had an amazing time and a couple of days we will never forget. Thanks to all the members of Team Lillie who got us here.

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.