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.