Independence or "Leave me alone"

Lillie and her Occupational Therapist in the play area.

We're not sure when it happened but, Lillie seems to want her independence. We used to be able to hold her for long periods of time. Now, she's decided playing on her own is just fine.

Don't get me wrong, we can still play on the floor and get the giggles we love to hear. She still loves to play with us, too. It does make her easier to watch.

Basically, we now have a non-toddling toddler. Lillie doesn't walk or crawl yet so, the attitude and opinions came but she still can't get to where she wants to go.

She knows what toy she wants and when she wants to be elsewhere. To get us to put her down, she leans forward to get out of our laps. She's gotten better at rolling around, which means she can change toys when she wants by reaching for a new one.

We've created our own play area for her (a blanket is the area, surrounded by toys, padded chairs, games and her exercise equipment). We spend lots of time with her there. We try to do the exercises the therapists do - obviously, we're not as good. She's even started playing with a drawing program on mommy's iPad.

Lillie continues to do better and better. There may be some setbacks along the way but, we feel ready for anything. We're so proud of our girl.

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.

 

 

 

Every Cloud Has A Silver Lining

Been a while, huh?  Let us explain.

On August 19 we had to bring Lillie into Dell Children’s Hospital.  While she had been having issues for the past few months with vomiting, giving her Zofran was able to stop the episodes.  We would then put her on fluids and work her back to her normal feedings over a couple of days.  But the weekend of the 19^th, the meds didn’t work. After trying to control the illness for a couple of days, we realized we had to take Lillie in.

Long story (and stay – 8 days) short, Lillie was diagnosed with gastritis.  She had bleeding in her stomach from open sores that were either caused by or were causing the vomiting.  By the time she got home, she was so tired of the hospital, she lit up and we got the first real smile we had seen for over a week.

One thing we learned from our stay – get a plan from your doctor.  You know we love the people at Dell; they have always treated us with respect and gone above and beyond when taking care of Lillie and us.  However, we feel the stay could have been a little shorter if we had demanded the doctors give us a plan sooner.  As a parent, it’s tough to remember that when your child is in pain and there are more questions than answers available.

Ultimately, it took a more experienced doctor to push the younger doctors into making a detailed plan that explained what had to happen to get us home.   We got that plan on Friday and we were discharged on Saturday.

On a lighter note, there was something very good that came from our hospital stay.  We got Lillie into a study at Dell that should help us with the organization of Lillie’s appointments and visits.  It will also centralize all of her medical information so we are not the only ones that understand the full picture of her health and development.

On Friday, we spoke with a doctor involved with the study – who has a daughter with special needs herself.  She explained they were trying to change the way pediatricians handle children with complex health issues.  In order to qualify, your child needs to have multiple health issues requiring multiple specialists.

There is a control group that continues to see their current pediatrician.  They get a phone call once per year where they are asked a series of questions about the health of their child and the quality of the care received from their doctor.  That is compared to the other group that changes their pediatrician to one at the Children’s Comprehensive Care Clinic at Dell.  That group goes to the clinic for care and answers the same questions once per year.

After hearing about the study, we signed up.  We expected to wait a few days to find out what group Lillie would be in.  We got the answer the following day.  Lillie randomized into the clinic group.  We were very excited, just a bit sad we would have to leave our current pediatrician.  She has been great to us and we really are sad to leave.

Over the last week or so, Lillie seems to be doing much better and is weaning off the stomach medication she needed to heal the inside of her stomach.  She’s getting back to a more normal routine and we are getting her smile and laughs back, again.  We started with a new Speech Therapist this past week and are excited to get going on all her therapies.

We look forward to going to the new clinic and we’ll let you know what we think.  We’ll try not to be so long away next time, too.

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.

Another Mystery Solved?

Lillie has had pretty severe vomiting episodes on and off for the last few months. As well as she has been doing in other areas, it has been worrying us a lot.

The first time it happened was a weekend in late April and she was up sick all night, so we took shifts holding her and trying to comfort her. When we took her into the doctor the next day it was diagnosed as a stomach virus. She recovered over the next couple of days, but then the same thing happened the next weekend. Again, it seemed like a stomach bug so we figured that she was re-infected by a toy or something in her room.

But it kept happening. Two weeks later, then in four weeks, and again in four weeks with smaller episodes in between. We got really good at the baby equivalent of holding her hair back. We consulted several doctors, including Lillie’s gastroenterologist, g-tube surgeon, nutritionist and pediatrician. We gave her anti-nausea medicine at the first sign of trouble. We took her in for an upper-GI scan which involves using Velcro to strap her to a board and spin her around so they can take images at specific angles. We tried switching her food multiple times. But it kept happening.

She had another episode this week, and it was worse than usual. The anti-nausea medicine that had always knocked it out didn’t work this time. After her amazing, trouble-shooting dad (mom was out of town on a business trip) spent the day calling nurses and getting her an after-hours clinic appointment, we found out that she had outgrown the dosage of her medicine; she finally started to feel better.

You can imagine it was not the best week for team Lillie. But, as we have learned over the last year and a half, there is always something bright and shiny mixed in with the dark and gloomy. This time, it was Lillie’s urge to grab Grandma Bette’s water bottle and start drinking from it like she knew exactly what she was doing. This may sound simple, but it is a big deal because she has difficulty swallowing and has been only getting limited fluids by mouth with help from therapists for about a year. It felt like she just woke up thirsty and decided she was ready to go for it.

We also got a possible diagnosis from Lillie’s pediatrician. She thinks her problem could be cyclic vomiting syndrome (CVS). This is usually something that is seen in older kids (3 to 7 years old), but it can happen at any age and it seems to fit her symptoms. Unfortunately, there is no cure per se, and it will likely continue to happen regularly, but it isn’t associated with anything life threatening either. Basically, people with CVS have these episodes at regular intervals and they don’t know why. We’re hopeful that Lillie will grow out of it – and not get the migraine headaches that are associated with it – and grateful to have one more mystery (tentatively) solved.

P.S. Special thanks to team Lillie member and speech therapist Rachel S. who recently moved to another part of Texas but made a big impact on our little one while she was here. Wishing you nothing but the best Miss Rachel!

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.

2nd Annual Memorial Day Weekend at Dell

Over Memorial Day 2011, we were at the end of a 17-day stay at Dell Children’s Hospital in Austin.  Lillie had been having some apnea episodes that no one could figure out.  During that stay, we ran multiple tests and had a gastric feeding tube or “button” surgically placed. 

One of the tests run was a swallow study.  Lillie was aspirating while feeding which is no good.  Time for a g-tube and only feeding with a Haberman bottle.  Milk flow through the nipple of the Haberman can adjusted by turning the bottle.  Lillie would only be allowed to use the bottle for a short time and the rest of her food given by tube.

Eventually, we would find out the apnea episodes were from seizure activity. 

Fast forward to Memorial Day 2012.

This stay was planned.  As we wrote last time, Lillie went in for her palate repair last week.  Basically, the surgeon went in and used tissue from the roof of Lillie’s mouth to cover the cleft and create a complete palate. 

Space Koalas

She went in on the morning of Wednesday the 23^rd.  She got a little upset in the waiting room, we’re not sure what caused it.  Probably could feel the tension from mom, dad and two grandmas and kind of knew something was up.  No worries, she slept when we got back to the consultation room where they ask you about medications, time of her last feeding and get her into a pint-sized hospital gown – in this case, Space Koalas. We also met all the doctors, nurses and anesthesiologists involved and the surgeon came by to answer any questions we had before handing her over.  Yes, she slept through all that.  She was still asleep when we gave her to the nurse to go back to surgery.  A quick kiss and an “I love you” from mom and dad and off she went.  Surgery was supposed to last about 3 hours.

Three hours is not too long for a surgery, really.  As many of you know, it is interminable when it’s your kiddo.  The cafeteria food doesn’t do much to help, though it has gotten better.  Four days of junk food and Starbucks.  Good idea in theory, not so good in reality.

Anyway, Lillie came through with flying colors.  The gap in her palate was pretty wide so they had to use a little more material from the roof of her mouth and do a little more stretching and relaxing of muscles to make it work.  More discomfort for her – the first 24-hours were pretty awful – but thankfully Tylenol with codeine and morphine work. 

Oh, in case you’re wondering, the surgeon was great.  He was having a good surgery day, was all smiles and everything you want from a surgeon.  He explained everything, had a great bedside manner and sense of humor.  We’ll see him again in 6-weeks for a checkup.  Maybe we were a little harsh on him the first time.

We had to stay a little longer than planned but got to go home on Saturday.  Lillie had some tummy trouble that caused her to spit up a few times on Thursday.  We had to reduce the amount and speed of her feeds while her stomach got back up to speed.  Apparently, that’s a pretty common reaction to anesthesia.

Most importantly, Lillie is back to her laughing, happy self.  She’s not allowed to put anything in her mouth (including fingers) so she has to wear no-no’s.  Basically, they’re padded braces that don’t let her bend her elbows – she hates  wearing them almost as much as we hate having to put them on her.

Not planning a third annual trip to Dell. As much as we love successful surgeries, morphine and Space Koalas, next year we're shooting for family BBQs, beer and trips to the duck pond.

A Big Week

This is a big week for our family. Lillie is scheduled to have her cleft palate surgically repaired on Wednesday. It is the second of probably six surgeries she will have to correct her cleft lip and palate, which is categorized as unilateral (one side) and complete (front to back of the roof of mouth). We have been looking forward to this date as much as you can look forward to something like this.

Luckily, the same plastic surgeon that repaired her cleft lip last August will be doing this procedure, so we have confidence in his skill and expertise. We are still preparing for his less than perky bed-side manner. The man is great at what he does but, warm and fuzzy he’s not. This week he will delicately close the soft palate in order to allow the roof of her mouth to perform its normal functions: preventing food and liquids from going up into the nose; allowing comfortable, natural nose breathing; and encouraging correct tongue habits for speaking, breathing and swallowing.

Of course, we are looking forward to all of this for her and hope it will encourage her development, but it’s also just plain scary to know your baby girl has to have surgery in a few days. Even when you do know the doctor, what he’s going to do and the hospital – down to the best snacks at the gift shop (dark chocolate covered almonds) – the butterflies still take up temporary residence in your stomach.

To make ourselves feel a little better, we make lists (mom) and plan to leave the house extra early to get there on time even with the worst traffic (dad) and call in reinforcements (grandmas). And there we’ll be Wednesday morning, nervously waiting for 2-3 hours, playing Words with Friends on our iPads, eating half way decent cafeteria food and making stupid jokes to keep each other smiling. All while Lillie is the focus of an A-team of medical professionals.

And, if we’re lucky, that is when the hard part really starts – a night or two in the hospital and weeks of recovery when she’ll look a little like a vampire (drooly baby + healing mouth) and will not understand why her arms are restricted with so called “no-no’s” to prevent her from putting her hands (or anything else) in her mouth.

Needless to say, happy thoughts and prayers are welcome. We’ll try to update this post as we go through the week to let everyone know how our fierce princess and not-so-fierce parents are handling things.

What A Difference A Year Makes

This is the second Mother’s Day we have had Lillie and the first where we didn’t have to consider going to the hospital with her.  Let me explain.

Mother's Day 2011

Mother's Day 2011, Lillie is only a couple of months old.  Very small (about five pounds) and we are very new at being parents, let alone experienced with Lillie’s many conditions. 

We take Lillie out back to take some pictures with mommy – first Mother’s Day and all.   We get her a little dressed up and sit her in mom’s lap.  Of course, Lillie spits up most of a feed.  This is the first time she has spit up.  It is all over mommy and Lillie.  Not exactly portrait material.

I had a soccer game (yes, the league has learned their lesson and they didn’t have games on Mother’s Day this season) and left shortly after that.  When I get home, Carrie tells me Lillie went rigid and turned blue very briefly while I was out.  It only happened once and we have never seen it before so we figure we will watch for anything else strange that day. 

A few days later, Lillie goes rigid and turns blue again.  We call one of Carrie’s sisters, who is (kismet?) a pediatrician.  She tells us to take her to a doctor right away so we start to get her stuff together.  Before we leave, Lillie does it again.

Okay, now we are completely freaked out.  We don’t have a clue what’s going on so we are in a full blown panic.  What do we do if she does it in the car?  Does this have anything to do with her chromosomes?  That CPR video they show you at the hospital before you go home is not adequate for what we are feeling.  Breathe.  Get her in the car and go.

We stop at Lillie’s pediatrician’s office because it’s very close to home.  We run in and grab a nurse.  They take her vitals and ask us what has been happening.  They look worried but tell us she looks fine and to take her to Dell Children’s Hospital ER to be sure.  It will be faster to take her ourselves than wait for an ambulance.  Back in the car we go.

No problems on the way there.  Whew!

Then we arrive and start to sign her in.  Rigid, eyes closed, very blue.  That did it.  We get rushed in and Lillie gets five nurses and two doctors in the space of 30-seconds.  Thus begins a 17-day stay in the hospital while they run tests – practically around the clock.  Part of this is a study to see how she swallows (difficult with a cleft lip and palate) and they find she is aspirating liquids and decide she needs surgery to place a gastronomy-tube which we will use to give her most of her nutrition.  At the end of the visit, we are told the cause of her blue episodes was most likely apnea caused by reflux. 

Mother's Day 2012

Well, now we know it was not apnea.  It turns out (we find out during a July hospital stay) Lillie probably had an infection and while she did not get a fever, it caused her to have seizures.  At that age, her seizures presented themselves by causing her to go rigid, stop breathing and turn a scary shade of blue.

In case you’re wondering, Lillie is doing well now with no seizures since infantile spasms (another post) the end of last year and we are having a wonderful Mother’s Day.  My advice?  Take a minute today, and every day, to give the kids (and their moms) an extra hug and kiss.   

All My Specialists

Dealing with Lillie’s conditions can seem somewhat daunting when you stop to think about all of them at the same time. Thankfully, we have team Lillie.

As we introduced ourselves in the “About me” section of this blog we included all family, friends, doctors and therapists in Team Lillie. Without the contributions from everyone, I don’t know how we would keep up. For this post, we would like to focus on the doctors and therapists - Lillie’s many friends.

All told, Lillie has 14 doctors that are following her progress. We are about to add a 15^th when Endocrinology comes on board (more on that in a later post). We have had one doctor tell us we don’t need to see him unless another one finds a problem with her kidneys. He’s on injured reserve from the team, if you will.

Team Lillie consists of the following doctors/specialists:

Pediatrician, Cardiologist, Dentist, ENT, Gastroenterologist, Geneticist, Nephrologist (injured reserve), Neurologist, Nutritionist, Ophthalmologist, Orthodontist, Orthopedist, Plastic Surgeon for cleft lip and palate, G-Tube Surgeon and Urologist.

Team Lillie also gets a lot of points from the bench:

Occupational Therapy, Physical Therapy, Speech Therapy, and Cleft Lip and Palate coordinator and Social Work.

So many people working to help Lillie can get a bit confusing. It is only through Carrie’s (mom) love of spreadsheets that we can keep track of them all. Carrie keeps an updated list of doctors, their specialties and when the next appointment is. It also has a second page that lists Lillie’s conditions, medications, phone numbers and emergency contacts. We bring a copy of the sheet to doctor visits to hand to the nurse or doctor. It keeps us from having to list everything on forms and answer questions every time we go.

In case you’re wondering, no, Rob (dad, me) is not the organized one. I would be lost without the spreadsheet and my wife but, don’t tell her I said it.

For our schedules, what does this mean? Lillie has 5 in-home visits per week from OT, PT and ST. Most weeks, she has 2 appointments in doctor’s offices for follow-ups, ultrasounds and other tests.

The good news for us is that all the doctors we work with are connected to or are at Dell Children’s hospital, here in Austin. While we have had to change one or two doctors to get where we are, we are very happy with the team we have helped bring together.

Moving forward, we’ll try to keep everyone up to date as we run the gauntlet of doctors. Up this week: Cardiologist (check up on aortic stenosis) and Plastic Surgeon (pre-op visit for upcoming cleft lip and palate repair).

Once upon a time...

Welcome to a sorta fairy tale blog. Last year we were blessed with our very own special princess, our daughter Lillie Eva – also known as Lillie-kins, Lilliputian, Lil’ bug and many other terms of adorableness. We’d like to use this blog to tell you about her and all the special people that help care for her and help her stay healthy, happy and learning every day.

Lillie’s story starts small – with tiny little genes. Along with her curly hair, she got a chromosomal anomaly from her Mom, Carrie. Carrie has what’s called a reciprocal translocation of chromosomes. This means pieces of two different chromosomes have changed places and the pieces have become attached to the other chromosome. Surprisingly, this kind of ‘balanced’ translocation, where there isn’t any loss or gain of chromosome material, is the most common and affects about 1 in every 900 people. Most of these people, like Carrie, don’t even know they have a translocation until they start a family.

When someone with a translocation like Carrie’s has a baby, there are several possible outcomes – normal chromosomes, another balanced chromosome translocation or an unbalanced translocation, which is what Lillie was born with. Specifically, Lillie has a duplication of part of chromosome number 2 and a deletion of part of number 21.

As we’ve learned, chromosomal anomalies are fairly common and can cause everything from issues like color blindness, diseases like Sickle-cell and complicated conditions like Down syndrome. Lillie’s chromosomal anomaly is so rare that we don’t know all of the ways it will affect her long term, but we have learned a lot about her – and from her – in the last 13-months.

Lillie’s major challenges (besides having goofy parents who are learning on the job as co-captains of Team Lillie) are difficulty feeding, low vision, trouble with balance, developmental delays and seizures. Her medical conditions include cleft lip and palate, optic disc abnormality, epilepsy, mild aortic stenosis (her aortic valve doesn’t open fully), bladder reflux and scoliosis (caused by abnormal vertebrae).

Our response? Team Lillie! Her response? A smile every day and strength that is inspiring. And believe us folks, she is a fierce little princess. We hope that you’ll join us for our adventures…the good, the bad and the utterly ridiculous.