About this time two years ago I thought we had made a huge misstep with Savanna’s care.  The permanent decision was grounded in faith and science, but somehow seemed unforgivably selfish at the same time as her behavior took a right turn, in the wrong direction.  We had put Savanna through another brain surgery for seizure control, but the recovery was a nightmare.

There were not any medical complications per se, but I found myself overwhelmed caring for a generally very unhappy Savanna, and quite depressed thinking this is the new normal.

Rebecca took a new role which required an unexpected amount of travel, and we didn’t have an Au Pair or nanny ‘on staff’ to help.  I thought I knew what to expect in recovery as I have been through this before. Right? Yeah, right.  An error in judgment, that honestly could not have been forecast.

She was not suffering from any kind pain that we could treat (and we tried), or anything at all that we could understand.  She just cried, a lot, and seemed to require 100% attention from me.

Shortly after her surgery, what little language she gained, disappeared.  Two weeks later, she stopped eating when she once fed herself just fine.  Shortly thereafter, she stopped drinking too.  With a G-tube already placed, we avoided another surgery and felt comfortable maintaining her health.  But, that emotional door swung both ways.

You can read all about those days here, here, and here if you are new to the blog.

Dr. V once told us, “…it is supposed to slowly get better…” with regard to the healing process.  Dr. T told us the surgery probably wouldn’t change her personality.  About a month post-op, it didn’t seem that either of these statements were coming to fruition.  But they were, and it was slowly getting better.

Two years later, we have discontinued all medications and she is not experiencing seizures or potential activity.  And now we are blessed with a wonderful little girl, development in full bloom.

 

This picture to the right was from the PICU about a day after her surgery. Two years ago, that scar on her head just seemed huge.  It was an enormous ‘badge of honor’ earned by so few in this world.  The pictures from those days immediately following surgery were grotesque.  This image is a special memory that is both horribly vivid and thankfully distant.  Time healed her physical wounds, the ones we could see on the outside.

Her ‘badge of honor’ is now barely visible, only showing itself when her hair is wet.  When I do notice, it invariably brings pause to what I am doing or thinking.  Often during this pause, I recall this snapshot captured in that hospital room and sometimes my mind plays a slide show of memories leading to now, 2 years later.

Since the last post, 3 Years Later, we headed out for another trip to see the family in KY and VA.  It was a great trip, as they all are, and here are a few pictures.

Her personality is developing as she is quite mischievous – like her brothers.  They do something, she must do too!

 

She responds to her name when called across the room!  There was a time when I didn’t think she ever would.

 

Her daily social skills training team, lol!

Prior to the trip, we had a great bed-time routine, by any family standard!  She slept in a crib, in her room, more or less when we were ready.  Boy, there is nothing like a long road trip to inject a proverbial wrench into a smooth-running operation.  While on the trip, she slept with Tristan mostly (when not with me), but always in the same room with the boys.  She clearly felt more included and proud of herself.  I wondered what would happen when we got back into our routine at home.

I am not a clairvoyant, but guess what?  Back at home, we saw an acute change in the bed-time routine.  Any attempt to put her in her crib was met with staunch protest.  I could pick her up while she was asleep on the couch and she would intuitively arouse enough to gather her whereabouts, and appropriately point to the boy’s room and demand “Au-tin” with her head buried in my shoulder.

A few months later, she still sleeps in their room.  She understands “bed-time” now.  She has her pillow and her place in an ever-changing communal bed arrangement.  Respect, she has earned and brotherly rebellion against her presence (and mutiny in general) are in check these days.

What about all the ABA stuff?  How is it going?  (It is pretty unbelievable, that’s how its going!)

She continues her ABA program (“Her school”) and has responded so well that the program changes rapidly.  Now, after multiple evaluations, she only attends 21 hours per week, down from 37.  The progress is amazing to witness and noticeable week to week.  Savanna’s ability to learn has never been better than now (thanks to no epileptic activity and no meds in play), and the functional results are testimony to the program’s effectiveness.  She is “catching up” quickly.  Many ask “What is ABA?” or, “What do they do there?”

They are teaching her complex skills in very small, calculated steps.  Her learning is centered on recognition / matching / sorting of objects, expressive/receptive communication, and reduction of maladaptive behavior.  Social Skills (peer-to-peer interactions) are integrated now as well.  Metrics are in place to quantify progress. For example, here are a few goals from her current program:

• Savanna will reduce her rate of engagement of flopping to the floor behavior to 1 or less times per hour across 5 days.
• Savanna will respond by giving eye contact when her name is called from across the room.  (Same goal for directly in front of her and 3 feet away, which she has mastered)
• Savanna will expressively identify lower case letters. (She has mastered upper case letters.)
• Savanna will answer 10 social questions.
• Savanna will take turns when playing a board game.
• Savanna will receptively identify objects with an intraverbal phrase, (You sit in a _____.)
• Savanna will contingently comment with a communicative partner for 5 or more phrases.  (I see…., My favorite….)
• Savanna will identify the noun/verb in various pictures.

She has about 20 goals, some to reduce maladaptive behavior, most for acquisition or increase in skills.  Once she meets  80% success rate for goal, for a specific amount of time, she has generalized the skill (or at least that is thinking).  Every 2-6 months, they formally evaluate her progress through a VBMAPP session (Verbal Behavior Milestones Assessment and Placement Program) and determine progress in each goal and make changes as needed to keep her moving forward.

Her day consists of rotating through her goals in different ways with a therapist.  The therapist changes every couple of hours. All of this is overseen by a BCBA, (Board Certified Behavior Analyst).  I was skeptical at first, as Savanna doesn’t do well with change, especially people, in her daily routine.  I have to admit, it appears an effective model for Savanna.  Her comfort level around all people has increased significantly, facilitating easier transition to pre-school/daycare.

As I mentioned, she now attends regular pre-school with Austin 2 days per week.  This is a big step and one we could not be happier about!  After all, the intent of the therapy: that she could function happily with typical compliance in a mainstream environment.  We love her regardless of her level of happiness and function in mainstream society, but what parent doesn’t want their child happy and functional in the mainstream world?

She has made incredible progress in her fine motor skills.  The difference between her left and right is at times more noticeable, but in a normal way.  What do I mean by that?  If I gave you a pen and asked you to write your name, I am pretty sure most reading this would always prefer to use one hand over another, right?

Then sometimes she surprises us!  For example, she is using scissors now.  “Cutting paper” is one of her new favorite things to do (with Austin).  All this time working with her on how to use scissors, she used her left hand to cut, right hand to hold.  And then I saw this one night….

A few things to note in the video.  There is another badge of honor on her abdomen where the g-tube once resided.  It is a constant reminder of how far she has come.  She knows it is there, and thinks she is special because she “has two belly buttons”.  Yeah, she is pretty special.  And one day, if it bothers her, she can have it altered surgically to make it “disappear” or less noticeable.

She can “color”, but it is like an infant would “color”, and like any activity with an infant, the beginning and ending of that activity are very close together in time.  It is at a time like this I realize how different she is than other kids her age in some respects; and I remember her badge of honor.

The severe expressive/receptive speech disorder has dissipated to mild at worst.  After 6 months of ABA + ST (she was already getting ST…) she gained 14 months in developmental age in her expressive communication.  Just amazing!  She is very vocal and her challenge now is phonetics.  She struggles more with medial and final word sounds.  All kids go through this stage of learning and it is usually a short-lived period of period of humor as they learn to pronounce word sounds correctly.  This is true for Savanna as well, she is humorous.  But the period of development is proving far longer and she still needs formal education/therapy.

What is a medial sound with regard to phonetics? For example, the phrase “apple juice”.  The sound you need to generate to say the word apple is “a-pul”.  The “pul” is the final sound in the word and medial in the phrase ‘apple juice’.  Savanna for the longest time pronounced this “a-juice”.

She recognizes letters and numbers.  She knows “s” is for me!  And, “b” is for “ba-don”, “t” is for “ti-tan”, and “a” is for “au-tin” and can find the appropriate refrigerator letter magnets and say just that.  It is so cute.  As I write this, she is finally getting the medial sounds in those names, and pronouncing them in a more correct manor.

Sometimes, when she is trying hard to pronounce words correctly, I see her eyes deviate up and to the right for a second or so.  This activity has been caught on EEG tracings with no correlation (this is very good!).  It is probably just a neurologic tic according to Dr V.  It comes and goes with time, and may or may not be present long term. Some therapists have commented about, many have not noticed it.

Today, Savanna has skills that yesterday I thought were unreachable for her.  I think all parents have some pre-conceived notions about their children, and these notions are shaped as our children grow and develop.  I expect Tristan, Brandon, and Austin to do well in school.  And they are doing well in school.  I expect success in their spiritual, professional, and social development and endeavors.  I have this seemingly real dream that they will get married; be blessed with children of their own; and one day be in the midst of a heated parenting moment and experience an awakening: “Oh. Mom and Dad were right.”

For some reason, I don’t expect Savanna to do many (or any) of these things.  I don’t know why I feel this way.  It is now clear, my expectations are unnecessarily truncated or modified as a result of the storm cloud epilepsy can bring into your life.  I study other family stories.  I support others newer than me to this world.  I remain humble with Savanna’s development thus far; as some of the family stories I follow, the seizures remain part of the equation with and without surgical treatment.

The reality is epilepsy at such a young age can profoundly affect the developing brain, usually altering ultimate outcome significantly.  The growing brain experiencing epilepsy presents significant challenges and enormous potential as a clinician treats the seizure disorder.  Time is not always your friend in these situations.  And, every affected child responds differently; as does every parent.

Here are a few examples of how much Savanna has improved in her abilities, memory, awareness, and physical endurance.

Not long ago, appropriate responses to demands required intense engagement, almost face-to-face with physical contact (if possible).  Now, she hears you talk; understands what you say for the most part; and can generally produce an age-appropriate response (even if it isn’t the one you are looking for!)

Recently she walked into our bedroom where one of our other kids was sitting on our bed watching TV. Quiet and off to her right side in the doorway to the bathroom, she clearly didn’t see me or know I was there. (If she would have seen me, I believe she most likely would have acknowledged me.)  She climbed on the bed and I retreated into the bathroom where she could not see me. I called out “Savanna,… Savanna!”  I expected no reaction from her, as I have tried this in the past.  Then I heard “What?” …. “What…. Dad?”

I peered around the corner to find a bright-eyed little girl with purple glasses looking directly at me.  I was blown away that she responded. Definitely an inch-stone was reached this day.

We have a bed-time routine that includes some prayers. Up to this point, she really never tried to say anything.  Then she started saying “Prayers!”, signaling it was time to say prayers.  And, when Rebecca or I would say them with her, she started saying the final few words.  Then demand a hug and kiss and say “Austin’s turn!”.  One day recently, she said the entire prayer by herself with minimal prompting.  Just amazing!

She loves to “Ride Bikes!”, as she says in her words.  She has little understanding of pedals or pedaling.  She has a tricycle scooter that she can use her feet to push along and goes around our street/court by herself. A couple of months ag0, she could barely make further than 1 or 2 driveways before giving up.

[A note about the glasses.  Savanna has developed a left strabismic amblyopia (turn in of the eye). She has hyperopia to the tune of prescription of +3.5.  The pediatric neuro-ophthalmologist feels she has a 50% chance at the hyperopia resolving by teenage years. And If we can keep her glasses on, the left eye turn in will straighten out and she won’t have a lazy eye.  This may not initially sound like a big deal compared to what we she has already been through.  But, when you factor her current visual field cut into how a ‘lazy eye’ can affect vision, you realize the magnitude of this potential problem on her long term vision.  And this is a situation that cannot (yet) be reversed later in life.  So, if I have to tape or glue the glasses to her head, I will (well, not really, but you know what I mean!)]

The invisibility of her badge of honor and almost irrelevance of her past on the ‘right now’ in many situations, has somehow created an emotional void in my life.  No one really cares about what she has been through as we push her more and more into mainstream programs at various levels.  And in fairness, I guess it doesn’t really matter to a great extent.

Savanna has been through a tremendous journey of micro and macro trauma as have we as her parents.  The long term affect is not yet well studied in a large cohort of patients or caregivers.  I am not talking about the Engel class of seizure control, but the quality of life which typically is not found in medical studies.  Yes, I know there are generalizations, like no seizures = great life when compared to life with seizures.  But that isn’t necessarily what I am talking about.

Patients like Savanna transfer to an adult neurologist after 18 years of age.  At this point, the ability to acquire outcome data for use in analysis for these patients is quite limited.  Finally quantifying quality of life is very challenging.  Thus, the use of terms such as “worthwhile” and “not worthwhile” are about as far as medical science goes right now with surgical treatment outcome analysis.

This quality of life has a lot to do with her environment moving forward, which is not closely related to the medical science of her case at this stage.  Many patients surgically treated in their childhood for a seizure disorder walk the planet today as adults with varying levels of independence and function.  But few patients/families write in such an intimate, open way as I do about our journey.  There is considerable support for families walking this path with a child similar in age to Savanna, but virtually non-existent support from past generations who have undergone such a treatment for epilepsy.

I intend to keep this blog going as long as I can as a resource for many.

Most recently…

We visited “The Rodeo”…. Notice her walking up the rope bridge – no hands on the rope!

Took some family photos…

Celebrated world purple day…

 

Attended a neighborhood “playdate” with the mom’s group…(yeah, I was the only Dad there, but it was a Fire Station tour….)

Celebrated Easter…..

She even had some things to say for the camera this day.

For those who don’t know, Rebecca is queen of candy and Easter is her Holiday.  Easter eggs must be made, chocolate bunnies and all sorts of other candies must be purchased; all organized in baskets and hidden for the finding Easter morning.  Last year, Savanna participated, but not really.  This year she participated! She found her basket and her chocolate bunny (with some help).  She found an egg, but didn’t understand that there were more ( a lot more, lol).  And the boys buzzed around her like a swarm of bees.  It was pretty cool to see her generally get the idea though, I have to admit.

While she got the idea generally, she became fixated on getting whatever was inside the egg.  It almost derailed the morning for her, but she got through it.  It is in these little moments that I ponder her future while reflecting on her badge of honor.