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.

 

 

 

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.