A Bucket of Flowers

It’s just a bucket of wild flowers from the pipeline behind our house.  But, it is a bucket Savanna decided on her own to fill with flowers to give to Mommy on Easter Sunday.

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We have done this activity before but, it required routine prompting even when other kids were already engaged in the activity.

This day she decided on her own to pick flowers for Mommy; a super heart-warming development that is new to us!

I gave Mommy the camera to take some pictures.  My heart skipped a beat when I saw Brandon using the camera!!  Yikes!  That was not the plan!  But, I must say, many of them turned out great.

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In January, Savanna’s development accelerated.  Even her SLP noticed she was responding very well to the process she previously fought or protested.  She relishes in positive praise when she acts as we expect or responds to our requests appropriately.  She loves stickers!

We use the token board far less these days, as she complies with most of our requests appropriately.  But I am finding this technique still useful overall.

Her conversation, inflection, tone, loudness, all have taken a developmental leap forward.  Her awareness of her surroundings and ability to change her communication if misunderstood has taken a quantum leap forward.

She recently had a re-evaluation of her language and results indicated her ability was slightly below normal to normal. I was not surprised. She remains in therapy because of her history and our concern about her pace of development.

She still struggles with pragmatic language and verb tense in a social setting.  She still struggles with phonetics.  In a formal setting, it is going well, but in a social setting, it is sometimes challenging to understand everything she says.  It is important for me to remember she is only four too.

Her fine motor skills are vastly improved, but this is an area where she is quite different from most around her.  Here are two recent examples of her ability, left is Savanna’s work and the right is Austin’s work.

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Potty-training is still a work in progress.  She seems to have #1 mastered during the day.  We had coerced a #2 out with intense effort on a couple of weekends.

I prompted her one day in a very simple way to try to make poo-poo on the potty.  This was after school during a quiet time when only she, Austin, and I are usually home. I walked away to do something else.

Then I heard Savanna yelling, “Daddy, I made a ‘fwoater’!!”

[Background: So, Brandon pooped in the lake one day a couple of summers ago, and the turd floated.  We all laughed and said he makes ‘floaters’.  It became household language, and clearly Savanna picked up on it.]

Then it happened again.  Then she went about 3 weeks without an accident.  And since have gone nearly 2 months without a serious accident.

Santa promised a new trampoline whenever Savanna could make #2 in the potty.  We now have a new trampoline!  (The first one did not survive a WWF-style slam into our house from a wind burst during a storm last summer.)  I am not ready to shed the diaper bag containing necessities for an accident, but that day is coming.

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All our kids love the trampoline.  But sometimes Austin and Savanna play by themselves and it is great social interaction.

 

 

Rebecca wanted to give the kids tablets for Christmas – before the start of our trip to VA and KY.  I accepted this with some agony, as any parent knows these days these tablets can be as evil as they are wonderful.  Surprising to us a bit, but Savanna not only loves her tablet, but is very capable on it. She loves the puzzle apps!

 

 

She has recently found the PBS Kids app loves to watch those videos!  This requires internet access and these tablets are wifi only.  About 1 minute into the 15 minute drive to school, the cached video runs out and the video stops.  Savanna proclaims, “This thing is out of wofi!”  It is hilarious.

 

 

Savanna came to Rebecca genuinely excited to tell her a joke.  (Rebecca is into silly jokes, and so are her older brothers, so this is not out of thin air here, but…)  Her exact words:  “Why did the skeleton cross the road?  To get the balloons on the other side!”  Oh okay.  Cue the laugh…

Easter morning when the kids ‘hunt’ for eggs and such… Rebecca loves this.  Me, not so much.  I want it to look like this…

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Rebecca is more this style….

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All kidding aside, this Mommy knows how to make each of our kids feel so special and loved.  She really thinks about Holidays and how to make time with them unique and memorable.

As Easter Sunday came to a close, I found myself staring at that bucket of flowers on my counter that Savanna picked (with Austin and Brandon).  My thoughts drifted back to when life seemed impossible with Savanna.

April 1, marks the 3 year anniversary of Savanna’s second brain surgery, the one that has provided seizure control to this day.  A huge day in Savanna’s life!  We are blessed!  As I stared at the flowers, memories of those days and months immediately following her surgery hit me like bolts of lightning.  Waves of emotion washed over me as I thanked the Lord for His grace, and this bucket of flowers.

2 Timothy 2:1  “You then, my son, be strong in the grace that is in Christ Jesus.”

I’m Going with Them Dad. Okay?

Fireworks.  Looking for inspiration I came across some fireworks pictures I snapped last July 4th.  This picture shows a typical firework just after the in-air explosion to 3.2 seconds later; revealing the path of each burning ember.

fiework-6262Metaphorically speaking, I see Savanna’s development the last 6 months like the firework picture, several areas of growth exploding independently, creating a wonderful overall effect, but also showing signs of stall as the burning embers drift with the wind – propellant exhausted.

Like the firework picture, I actually see Savanna as she was 6 months ago and how she is now – all at the same time.

I hear her opine on and on about different subjects!  To the point I find my self asking her to be quiet sometimes.  I hear grammatically proper and phonetically correct sentences.  I hear an exploding vocabulary, with nearly unlimited parroting.

Phrases such as ‘fwench fwies’,  are quickly being replaced with the correct phrases.  Suddenly, her social interaction and behavior looks normal?  Her physical ability now allows her to ‘hang with the boys’ for the most part, feeding the positive social interaction.

I praise her advancements since our last outing to the play place, playground, or the stairs that lead to the Speech Therapy facility.  I do not praise mediocrity but rather encourage exceptional performance and behavior; both with our boys and Savanna.  She responds to that fuzzy but hard line.

I am amazed!

I also still hear the struggle in her language.  I hear the difficulty pronouncing complex sounds.  I hear echolalia.  I see the inappropriate grading of physical gestures towards her brothers.  I see the undeniable speed difference with which she processes and reacts to new environmental input.

Like the drift evident in the fireworks picture, I see her coasting for the moment.  And when she can’t respond to the fuzzy but hard line like her brothers, well….

I am concerned.

I am both amazed and concerned at the same time.

For the first time, I have observed Savanna realize her challenges with expressive speech.  Watching her put up emotional walls and turn inward was profound.  My mind raced forward 10 years regarding her emotional health.

Discharged in September from facility-based ABA, she has progressed to a level where she can function in mainstream environments, or so we think.  Similarly, she was discharged in November from in-home OT services for the same reasons.  These 2 months were like letting go of the bike when you have been running along with your 5-year-old for miles holding them upright…. And suddenly; there they go; on their own.  And all the ‘what if’ scenarios start to play out…

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Her BCBA at the ABA facility recommended that we start in-home ABA services to surveil her progress.  Her developmental pace is what we now monitor.  Is she keeping up or does she need help?  A neuro-psychological evaluation in the coming years will help us identify specific areas which might need extra attention.

Right now, life with Savanna is such a blessing and joy as she seems to fit right in with her peers.

Well, there are moments of course that are very unpleasant, like when she goes # 2 in her pants.  Yeah, that sucks – still.  It sucked a lot less when she wore a diaper, but she has mastered #1 and I find she loses that mastery when the diaper goes on or when the routine changes, so now what?  We are going on a year of #2 training.  She has no desire that I can see to accomplish this task, despite all our incentives.  I feel defeated in this area for sure.

She is in fact, only 4 years old.  While I see her as a professionally trained child with nearly 2000 hours of formal therapy, most see her as just a 4-year-old little girl with a short haircut and cute sunglasses.  She has what?  She is missing what?  She can’t see what?  Really?

Yes, really.  That is amazing I know!  God be praised!

Savanna follows much more than she leads, which is okay I guess.  She does initiate activities Austin enjoys, like building anything Lego, coloring, etc.  She will mimic just about anything Austin does.  Thankfully, she still sits to go pee pee! But, I won’t be surprised if she decides to stand up like Austin, lol.

She is also great at being mischievous.  A hidden talent, no doubt.  A short example:

Not long ago, we went to ‘Hot Wobby’, Savanna lingo for ‘Hobby Lobby’.  I only needed a picture frame that was already in my mind.  They (her and Austin) walked away around the corner and I thought to myself, “they will be okay” as I let them go.  I could not find my frame, and then I heard ‘the devious laugh’.  I turned the corned and found them with a couple hundred gift cards and envelopes scattered in two distinct piles in the aisle.  It almost looked competitive, like who could make the bigger mess!  I was too embarrassed to even take a picture.

Savanna was proud of herself and the look on Austin’s face turned from priceless to fear as he realized I was there.  He knew he did wrong and immediately covered his butt with his hands, because Yes, I am one of those parents!  Savanna still has both frontal lobes but, sometimes I wonder about the function as she didn’t get the ‘wrong’ at all?  lol.

Noteworthy is the increased tolerance and patience from her brothers including her twin brother.  Not just the expected empathetic response to your sister being hurt, but truly being patient with her knowing she isn’t behaving appropriately.  Just when I think they do not ‘get it’, I see the interaction when a friend or classmate comes over who has no awareness whatsoever of Savanna’s challenges.

It is then that I realize the real affect of Savanna on them.  Heavy is my heart during these moments of reflection.  What will they be burdened with when I am gone from this earth and Savanna needs a lot of help?  Their preparation is under way already.

In June we ‘graduated’ a pre-K and 1st grader to Kindergarten and 2nd grade.  Savanna regularly proclaims “I will ride the bus Sunday!” (she means some day).  She is right.

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Early into summer, I thought Swim Lessons would be a good idea!  Savanna’s relationship with the water is sinusoidal love-hate.  This period was one of hate unfortunately.   Challenged by her own behavior, she had difficulty responding during the lessons, despite this cute picture.

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Despite all the protest and hassle, Savanna did learn. And, she demonstrated that later in the summer.

Vacation!  FL-VA-KY this year.  Destin, FL, was our first stop for some time in the white sand with Rebecca’s family.  Still enrolled in facility based ABA at this point, Savanna’s day included immersion in all things ‘appropriate social interaction’.  She was happy showing off her skills and getting all the positive praise.  She loved the beach and the pool, but not the ocean.  NOT the ocean.  I don’t know why.  She didn’t even like us being in the ocean.

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She talked constantly during our stay in Destin.  Proving she generalized a skill, she learned everyone’s names quickly, 16 other people besides our little family of 6.  She initiated a lot of conversation.

But still, she was three.  And, so was Austin.  This picture during our attempt at a group picture, pretty much says it all – or a lot of it anyway!

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Our clown show arrived at Grandpa Ken and GranShe’s in VA house where Savanna once again amazed them with her independence, happiness, and seemingly new-found language.  Our boys love their house as it is on the lake with a large piece of mature woods, perfect for adventure and exploration.

Savanna was in a period of love with the water at this point, despite her recent protest at the ocean!  Once unthinkable, I now envision her someday riding the inner tube, or whatever, by herself.

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A quick stop in KY to see more family.  Savanna was such a joy during this trip.

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Returning from our trip, we ushered off the other kids to school.  While it felt good to put them on the bus, the unrelenting waves of unnecessary financial solicitation began; whereby the school and the PTO ransom the emotions of our children to puppeteer our check-writing hand.  I wish they would just ask straight up for money and stop the nonsense.  Soon after, the homework followed.  You know, the homework that always leaves you wondering what do they do all day at school?  (Austin is such a character in this picture!)

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We have a lot of Veteran’s in our family and to them, I say Thank You!

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We have 4 birthday’s in our house during the fall.  This year, Mommy celebrates the big Four O! (I am sure she is glad I added this, lol!)  Then Austin and Savanna turned 4!  Their journey: amazing!  God’s plan is at work.  Finally, Brandon turned 6.  He is the middle child, enough said. HaHa! Austin is a little poser!

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This picture of Brandon’s SpiderMan cake is a great one of Savanna.  Photographing her is often challenging.  Her eye contact is far less than her brothers – it is a constant battle.  Just about every photo moment takes about 100 pictures to get a decent one, and she often is still looking away.  Not today!  (Yes, Daddy made the cake – that’s right!)

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Despite the cute rainbow dress in this picture, Tom Boy best describes Savanna’s typical behavior.  She usually wants to wear Austin’s underwear, Austin’s socks, Austin’s pants, Austin’s shirts, and for sure Austin’s Jackets.  Her latest wish is Austin’s shoes, (that are like 4-5 sizes too big.)

These pictures are the best.  Taken on September 20th, their birthday, Austin is her Angel for sure.  Yes, Savanna is able to interact with him on his level, but he is patient and tolerant of her as she learns.

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Girl toys? Not so much.

Swords.  Power Rangers.  Ninja simulation.  Lego blocks.  Yes!

Girl pajamas, sometimes.  But, only over top of the boy ones, lol.

Here she is just wanting to do what the boys are doing, shortly before Halloween, field testing the Halloween gear of course.  (Almost none of this gear actually survived to see Halloween.)

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Then Halloween arrives.  Sigh.  Oh yes, Daddy’s favorite Holiday – not!  A day of memorial has morphed into extreme candy entitlement.  An elementary study of the foundation on which we celebrate some of our ‘Holidays’ reveals significant migration from the original intention.  We participated anyway because it is in fact Rebecca’s favorite Holiday, second only to Christmas.

Here is a cute video showing Austin taking his daily medicine from Savanna.  You can see in the video that Savanna hit Austin hard with the plastic sword on accident.  She displayed zero empathy and zero outward understanding she made a mistake whatsoever.  This kind of behavior is still a bit of a problem.

And then Brandon… He decided to start a game of ‘Hit the Butt’.  Yes, I know, judge me.  I have let it go because Savanna loves it so much.  Here is a little snippet of what that is like on the platform swing.

By the time October 31st actually arrived, most of our costumes showed significant signs of wear and (ab)use, as the daily play routine 3 weeks prior included mandatory use of all-things-Halloween.  Luckily this event happens at night.  Savanna did well, still quite slow, but she participated far more than the previous years.

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Thanksgiving was great this year as we hosted family from CA.  By now, Savanna was really warming up to Mommy.  She has really been a stinker in that regard, being a ‘Daddy’s girl’ to a fault.  (it was an ABA goal…to address Mommy)  But, mommy handled it well. And finally, the pendulum changed direction and we started hearing her ask Mommy to “come help”, “come see”, “take me with you”, “No!  I want Mommy to brush my teeth, wash my hair, etc…”

Here she is in a video compilation performing in a ‘Sing-A-Long’ for Thanksgiving at her school. A familiar daytime place presents 3 opportunities for nasty falls in the evening as her visual field cut gets the better of her at night.  Knees scraped up, she begins to derail emotionally as I usher her into the staging area.  Only Mom’s in there (Mom’s I don’t know), I feel the eyes of judgement from all around.  For a second, I contemplate giving up and giving in.  Then, I get right in her face and we work it out with tactical technique and surgical conversation I re-engage Savanna in the activity.  I promptly leave without looking back while Savanna cries, knowing she will be okay.  The onlookers thought I was a complete a-hole Dad for sure, but Savanna responds.  And respond she did!  Tristan, 7-years-old, captured these video snippets.

 

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Recently we were in KY for Christmas and were eating lunch at Aunt Kathy’s house.  Savanna wanted Mommy to come see something.  Mommy assured Savanna that she would ‘come see’ once done eating.

Savanna could not wait.  She came to the table, security blanket in hand (finger in the loop formed by the tag), and grabbed Mommy’s hand proclaiming “Mommy! You are done.  Come with me!”

Everyone got a good laugh, and was impressed at some level.

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November was epilepsy awareness month, with a special week in December for Infantile Spasms.  It passed quickly for me this year. Watching my Facebook news feed turn purple, I failed to address it out loud this year in any meaningful way.

I often struggle with Savanna’s amazing progress given the prognosis that comes with such a devastating neurological condition.  Why?

I could leave that life behind and operate under the assumption she is healed or cured.  But science doesn’t see Savanna’s situation as healed or cured; the same science that provided the course of treatment that helped her.

It may just be semantics to some, but I see Savanna on a path to resolution, not healed or cured or even on such a path.  My wife recently told me 99% of people would think I am wrong; that stopping the seizures is equivalent to cured or healed in their minds.

Cuts and broken bones heal.  Healing involves restoration of health, like ‘as it was before without loss’.  Removing brain cortex to gain seizure control is not a healing process in the true sense of the word, but one of resolution.  And no one truly understands the condition of the remaining cortex, as the underlying etiology is unknown to a large extent.

One could argue she is past the age of her West Syndrome, thus classifying this as resolved.  The cold truth is that Savanna is still very early in her journey with epilepsy.  Relief of her seizure burden by removing the offending tissue only guarantees seizures won’t come from that area of the brain ever again, nothing more, nothing less.  Her risk of experiencing more seizures is elevated.

Savanna remains seizure free, nearly 2 years and 9 months.  She also remains medication free, more than 2 years now! (Still an Engel/ILAE 1a surgical outcome for sure.)

I will always watch for seizures.  I can’t even look at another baby or child the same way, let alone Savanna.  The innocence is long lost, stolen in the dark of night.  In broad daylight I work each day to regain a little bit of security.  I do this without anger toward God.  I do not believe he wanted epilepsy to be part of her life.

I believe God’s plan is for each of us to find the good in life.  I consciously choose not to look away from Savanna’s past partly because it fuels my passion in actively helping others navigate once finding themselves on a similar and unlikely journey as a parent to a child like Savanna.

Segway to Dance Party!  This is a girl who had global discontinuities on her EEG (proverbial EEG ‘flat line’), global hypsarrhythmia, and really nothing at all normal happening in her brain at 12 weeks old.  Look at her today!

As long as we are able, we will make the pilgrimage back to KY and VA to visit family over Christmas.  At Grandpa Ken’s and GranShe’s house, we went on a ‘hiking adventure’ in the woods, well kind of anyway.  I encourage Savanna to go with her brothers.

Then, Savanna paused, turned towards me and proclaimed:

“I am going with them Dad. Okay?”

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She Talks! A #TBT video post…

(Savanna is 2 years, 3 months, and 21 days (842 days total) since her second surgery which completed a full TPO resection. She is nearly 8 months medication free!)

She spoke very little entering that surgery, 4-1-2013.

A “mama” here and there was about it.

A month later, it was gone.

A year later, still no expressive language, I was worried.

The ASD diagnosis helped with acceptance, coping, and moving forward.

On July 23, 2014, I took this phone video and felt enamored she responded with her signing to the question yes or no.  She emphatically responded “Yes!” in her own way with the sign.  Months of work went into this moment!

She used body language to engage Austin when it was his turn to ‘jump’.  You will see it if you watch it twice.

 

 

I honestly wasn’t sure she would ever talk.  Or, perhaps a better way to characterize that emotion is to say “I was not sure she would ever talk like me.”

The SLP’s (Speech Language Pathologists) that worked with her regularly reassured me: “She will talk!” …..if…. (a huge IF) ‘the seizures stay away’.

Here we are, one year later from this video where I caught her in the background signing “yes!” appropriately.

She speaks!

She thinks, then speaks!

She feels, then speaks!

She reacts, then speaks!

She speaks!

Here is a video from today, one year later.  It isn’t with her brother playing, but it is quite representative of where she is today with her expressive language.

 

 

It is amazing.

It is beyond what I imagined, but admittedly, not what I dreamed for my daughter at this stage of her life.

Given what she has been through, it is unbelievable.

She is working hard on the phonological part of our language.  Blended sounds, sounds that come in the medial and final position are difficult, while by themselves are clear and somewhat easy.  What do I mean by that?

For example, the “th” sound.  Seems easy, but when in the medial position, such as it is in the word ‘father’, it is very difficult for her to create the proper sound.

When its gets tough to handle, what I need is a prayer.

Prayer to the Lord our God for enabling these magnificent events to happen both in Savanna’s life and mine.

He is in charge.

He provides leadership we need, when we need it.  We act accordingly, as disciples should.

For a few moments each day, I try to slow myself down, and listen to what God has in store for me today.

And just Be.

Be quiet.

Breathe.

Read the scripture.

It fills my soul with necessary fuel to live each day to the fullest.

-dad

Badge of Honor

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.

savanna blog three years later-34Two 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!

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

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Her daily social skills training team, lol!

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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 imagesPACXV9LLcould 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!

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Took some family photos…

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Celebrated world purple day…

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

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Celebrated Easter…..

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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.

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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.

Three Years Later

If I could have a conversation with Savanna, who has ASD (Autism), and she could magically understand things the way we understand them, just for this conversation, it might sound something like this:

 

Me:  Savanna, you can play with all the toys in the bins, not just dump them out and throw them.

Savanna:  What do you mean, the toys in the bins are not just for dumping on the floor?

Me:  (Silently operating a 6-12 month random baby toy in front of her, for the millionth time…)

Savanna:  Oh, I see! Can I try?

 

Me:  Savanna, not every hole and fabric loop is for inserting your finger. But it is okay if you do.

Savanna:  Daddy, I wish I could stop doing that, but I just can’t.

 

Me:  Savanna, the words I say aren’t just weird noises, they actually have meaning.  They can even be put together to form what we call sentences that convey thoughts, feelings, instructions, etc.

Savanna:  Oh, I just thought you just like to hear yourself make these noises.

 

Me:  Savanna, the food we serve you at the dinner table is actually for eating, not throwing.

Savanna:  Oh. Why didn’t you tell me?  Maybe I will try to eat some of these things.  Daddy, how come the other kids throw the food too?

Me:  Well,  … its complicated….

 

Savanna:  Daddy, you mean it is difficult to do your daily tasks when I insist that you hold me all the time? You say your back hurts, why didn’t you tell me?

Me:  Savanna, I tell you this everyday.

Savanna:  Oh? I never understood that before.

Me:  I know.

 

Savanna:  Daddy, why do you get so excited when I put a square shape into a square hole? It’s not that big of deal you know.

Me: Well, I think it is really great and I was actually trying to get you to do it again by showing positive praise.

Savanna: Oh? Sorry, I just didn’t want to do it again.

—————————————–

Savanna’s (special needs) Journey formally began December 19th, 2011 when she was diagnosed with a seizure disorder.  Her disorder took away her normal life by arresting development in every way.  A symptom of an abnormality in her brain, her disorder proved medically refractory.  At 18 months old, she underwent a left TPO resection (removal of ~70% of the left hemisphere of her brain) to mechanically control the seizures, which it has done.  It has given her a second chance at life; her best chance.  Three years later, here we sit.

savanna blog three years later-8I find my situation surreal today.  But it is very real.  Three years after it all began, I administered the final dose of her last medication.  What does the future hold for Savanna with regard to seizures? No one knows for certain.  She is nearly 21 months seizure free and not on medication, indicative of a long period of control in her future.

Three years later, I find myself learning how to teach in a whole new way.  I never thought I would know so much about physical therapy, occupational therapy, speech therapy, and ABA.  She is 39 months old, functioning at about a 2, maybe 2.5 year old level, far less with regard to expressive speech.  This sounds not so great, but my heart is filled with joy!  She makes strides everyday.

The power of prayer and His word have led us to this point.  We made faith-based, selfless decisions and accepted the risks and consequences in search of the best chance for Savanna to thrive.  God was holding our hands and leading us even when we couldn’t understand the path or the advice clearly.

While she is now considered “normal” by many, Savanna’s brain development is different from a typical child.  The way different parts of the brain work together is possibly different. These differences are difficult to measure, as is the effect of these differences on her ultimate outcome.

Yes she is “smart”!  She is learning in her own way, on her own schedule.

She is learning to speak!  It has taken nearly 2 years to get her to appropriately say simple words like Yes and No.  She loves the power in the word no, and it has become her standard response to a question before reconsidering then following her “no”…”yes”.  She has a mixed receptive/expressive speech disorder that when coupled with her cognitive delays makes communication very difficult at times.

I remember when Tristan, our oldest, was about 1 year old.  We would drive around and he would say “bus” when he saw a bus of any kind.  It was a very short time until he understood “yellow school bus”.  Savanna just started to say “bus” in the car when she sees one.  And often times, she only says “yewow (yellow)”.   She knows the golden arches well, and says “pway pwace” every time (unless we pass it on her blind side).  It is very reassuring feeling as her parent to hear this, as it means to me, she is learning.

I sat down to write this long-overdue post, and realized so much life had been lived since the last post. Maria and her daughter Luna visited from Norway for three months while they sought treatment for Luna’s epilepsy.  While they were here, my mind just paused.  Every thing just kind of slipped away and it has taken some time to remember all that transpired.  A few highlights…

She and Austin celebrated turning 3 recently.  On their birthday, Savanna decided to take us for a walk.  She took each of our hands and proceeded to pull us along. Rebecca and I were beside ourselves, as she had not ever done anything like that.  She said “Hi” to the camera when prompted. It was amazing.

She really enjoyed being part of making the cakes. She cracked her own eggs with very little help.  It just warms my heart seeing her understand opening a wrapped gift, not a simple concept I have learned.  Turning three meant she “graduated” ECI.  And should we continue with publicly funded help, it transfers to the public school system.  Her awareness of and participation in her environment is so dramatically different, it is difficult to compare to one year ago.

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Celebrating Halloween this year was a little different for her. She participated, a little.  But the experience was bit overwhelming, and she is always exhausted at the end of the week from the intense ABA programming.

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We went to the Second Annual Pediatric Epilepsy patient/caregiver reunion.  She was much more active this time.  Her neurosurgeon helped her put her shoes back on after exiting the bounce house. How cool is that?  I think he was a bit amazed how well she is doing, maybe not.  Definitely, it reinforced the decisions made in her case.  Some pictures and a link to a youtube video made by the hospital (I have short spot in it…)

 

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Link to CMHH video of the 2nd annual pediatric epilepsy reunion. 

We supported Maria through Luna’s surgery and visited Maria in the hospital a day when Savanna’s school was closed.  Savanna walked all the way into the CMHH pediatric day surgery waiting area from garage 5.  She has never done that; I had to take a picture.

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We went to Galveston beach at the end of October, and she loved the water. It was still warm, and quite clear this day.  She enjoyed the waves, noticed the kites flying, and was interested in “helping” build a sand castle.  We love Houston!

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She enjoyed Brandon’s birthday at Chuck-E-Cheese, especially the large indoor play structure.  We almost couldn’t get her out of that thing!

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These activities have all been more fun (for her and us) since starting ABA.  Her expressive language development has exploded.  She talks to us now.  In general, she can express her feelings in words.  I admit, we don’t always understand her approximations, but its a start right?  But for sure, she wants to talk; she can talk!

She has many words now, when just a few months ago she had none, no fault of the speech therapy she received for 24 months. She wasn’t ready then, simply put.  The therapists always said the information is going “in” and one day it will all come “out” in words.  They were right.

Rebecca recounts reading the ABA plan with Savanna’s “6 month goals” before she started ABA.  There were goals like “say 20 single syllable simple words” and “make 5 animal noises”.  She was scared that might not be possible in just 6 months time.  A miraculous 2 and 1/2 weeks later, Savanna was talking!  She’s blown past her 6 month goals, and we are convinced that she will be able to do anything she decides she wants to be able to do.  Amazing!

She puts 2-4 words together now appropriately without prompts. She is able to parrot many words we say, even if she doesn’t understand them. She struggles with certain phonetic sounds, such as the “k” sound, like in the word bike.  Her approximation isn’t even close on this one.  The speech therapist notices this and feels she will get it, but it is just not happening as quickly as the other sounds.

We believe the ABA has helped dissipate her OCD behaviors and it has certainly smoothed transitions between activities and people.  We are more cautious now of situations that can derail a “good mood.”  And during ABA (40 hours a week) she has 100% 1:1 supervision, which helps redirect her when she starts such behavior.

Sometimes we exploit the OCD behaviors at home, for example if she doesn’t want to get dressed.  You can almost always find a top or dress with a bow on it, (with a fabric loop), show her the loop with your finger in it, and she will usually be okay with wearing that outfit.  I am sure some out there would say this is a bad idea.  At this point, I am picking my battles.

Sometimes, this happens…

Suddenly she was very upset! What happened? What was wrong!  She demanded I hold her – or else meltdown. I went about my work (holding her) which is usually enough.

She refused to be happy.

She refused to use words.

She cried, then she screamed.

She was a snotty mess. I didn’t know what was wrong.

Finally, I figured out the pantry door was open and the light was on.  This bothered her terribly, but she did not want to go take care of it herself for some reason. So, 15 minutes of complete breakdown, for what?  I don’t know.

And, that’s the point, sometimes we just don’t know what is going on in her head.

She does eat without throwing (too much) these days, though her diet remains severely self-limited.  If you serve her fruit (except watermelon), she will protest, period.  If you are adamant she try it, you should be aware of imminent flying food.  I guess this is somewhat normal?

Oh those shape sorters.  She understands shape sorter toys these days.  But, conceptually does not understand shapes via their names.

These days, we work more on color matching.  We sort 2D and 3D objects, matching like items. We work on letter and number identification. All of these tasks start simple, with organized aligned rows of items.  But the goal is for Savanna to sort/match items from a random unorganized pile, with only minimal prompts.  She has done so well, so quickly, we now work on puzzles too – a much more complex challenge.

Her fine motor skills increase daily it seems.  She can thread a very small string though really small beads, or holes in a board.  She can cut paper with scissors with some help and prompting.  (wow! right?)

She can randomly draw with crayons/markers for a couple of minutes.  If you prompt enough, she can make horizontal, vertical lines, and circles.

If the other kids want to color, she too is interested.  I set up a space for her on the table, but she usually loses interest quickly. This situation is disappointing and frustrating to watch.

A character trait you cannot teach: Desire to Independently Learn.  Yep, she has that one!

It is glorious!  It is almost to a fault though as she refuses hand-over-hand assistance.

She has the ability to sit and focus for a long time with a therapist or with us as a parent.  But make no mistake, it is very hands on. You have to be right there to keep her on track.  The minute you think you can step away, well….

ABA has indicated she is ready for potty training.  They don’t want to wait since she has exhibited so much interest in using the bathroom.  We have seen this at home too, and have agreed to work with the ABA center to develop a routing for Savanna.  We are excited about this addition to her routine.

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She can play with her brothers for longer periods of time (without me!!) on a somewhat regular basis. She will do this when the activity is something she prefers.  She LOVES the trampoline and the swing set.

She loves her platform swing too, and this has become a staple in her sensory diet – every day. Not sure how our annual trip back to the VA and KY (where this won’t be available freely or otherwise) will unfold without this resource.

savanna blog three years later-11She can jump now! That’s right, leave the ground with both feet at the same time (and land appropriately)!  I know it sounds trivial, but this is very difficult with children with proprioceptive deficits or dysfunction.

Austin and Savanna play the “rib-bit” frog jumping game sometimes.  I think it is their own language, lol.  And she jumps! The trampoline is very helpful for developing her leg and core muscles. We also use the Sure Step SMO braces to help correct the pronation in her feet.  A recent gait analysis showed  significant pronation, poor symmetry, and wide gait indicative of low balance and tone in her core.

The scientific evidence shows we need to work diligently at correcting her gait before the age of 7, after which correction is more difficult.

She loves to get in the middle of the action with the boys.  When she is in a good mood, she is right there with them.  She is often the first one hurt and crying.  I generally push her back “into the octagon” and gently give the boys some additional operating parameters.  A pillow fight for example, is a great way to experience a lot of heavy sensory input.

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Here is a video clip of her swinging.  A few months ago, she could barely push the swing around and still hang on.  She is a bit tired here, but manages quite well.  Important to note is that she understands to get near the center of the platform to reduce the centrifugal force from spinning.  It is there she can comfortably sit and eat, or whatever (notice the chips sitting in the center).  She loves her swing!

This next clip is hilarious.  A good use of the physio ball (not found in the instructions!) It builds leg and foot strength, increases core strength, and increases balance and spatial awareness, all with a little fun.  The amount of input from the adult greatly changes the amount of input from the child.  You can plainly see the differences between the Austin and Savanna here.  The motor planning is happening for both, but the results with regard to timing, strength, and overall execution are vastly different.  Still, she has come so far! And I am proud!

Once again, they conspired, as they usually do on a rare quiet Sunday afternoon. We were busy cleaning around the house like a bumble bees and suddenly the eerie silence is softly broken by intense laughter from outside? Uh-oh.  They snatched the physio ball from the official place of storage, and managed to get it on the trampoline.  Yeah, that’s right, as if the trampoline itself wasn’t enough.

 

I would like to say “Thank you” to all those who have helped us with Savanna’s care. Without your input, your guidance, and your wisdom, Savanna would not be where she is today.

Dr. Gretchen Von Allmen, Dr. Mary Zupance, Dr. Nitin Tandon, Tammi Rainwater with MHMRA, George Michel with MHMRA, Nikki Dupont with Reach Healthcare TCG, Dana and Jennifer at The Speech Emporium in Cypress, Dr. Allison Arthur with TCPA, and all the therapists at Tangible Difference Learning Center in Katy.  To our parents and family, Thank You for supporting us.

Thank you for your interest in helping Savanna; helping us as a family.  We greatly appreciate it.

Have a Blessed Christmas,

-Liningers

An Inflection and a Touch of Back-to-School Stress

Not to diminish the anxiety involved in two kids starting pre-school and one starting first grade, but seriously, it just isn’t that big of a deal for me. Our [neuro-typical] kids are looking forward to going, and this exhausted daddy is too! But, there is some stress related to managing the back-to-school routine. All the stuff to buy. The return of the pain-in-the ass lunch food rules and schedules (is there a hashtag for that?). Lists of rules, that boil down to a rule for every exception (and every exception to the exception) known to mankind regarding public education, when the reverse policy works just fine. Who has to be where and when? I could go on-and-on… but, I really don’t care all that much after all we have been through –  I am not stressing (though I may complain from time to time).

Then there is Savanna,  (who doesn’t like peanut butter anyway…)

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The date is set. The moment has arrived. Not exactly the same acute drama as brain surgery, but definitely high-running emotions about what may result from ABA therapy. Savanna starts September 1. This therapy is widely considered the best intervention for ASD related behaviors.

It is not scientifically proven to ‘work’ (meaning cure) but evidence shows children who go through this type of intervention have the best outcomes.

This means everything is changing. Schedules, therapists, daily routines. Much like for any family with school-age children.

Savanna will also receive OT and ST at their facility, which means discontinuing her current regimen.  It means adjustment to entire new set of therapists.

Early Childhood Intervention (ECI) will end on her birthday in September, but her attendance schedule at ABA, effectively ends it day 1 of ABA.

Also discontinuing is vision (VI) and orientation & movement (O&M) through the public school system since Savanna will not enroll in PPCD (Preschool Programs for Children with Disabilities).

I hear quietly from people in the know, this label (qualifying for PPCD) is like jumping into a pit of quicksand. It is so easy, and honestly, the only option for most. Just do the eval, and then boom! You are enrolled! Except, what is not explained is the process to ‘get out’, or remove the labels segregating her from the mainstream crowd. I see mainstream education as an option for Savanna. I want her to have the opportunity to attend Kinder at her normal time if during the next three years she proves she is ready. If not, then we go another route. Is it just a dream at this moment? Maybe so. But, I am not yet ready to relinquish my dreams for that the epilepsy has most likely stolen. Perhaps over time, my dreams will evolve.

I have been closely involved with her care for more than two years now as a stay at home dad. I have interacted in detail with all the specialists and therapists. I know the insurance nuances well. I am the judge, jury, and executioner when it comes to dealing with her behavior and actions. I am also her safe place most of the time. I am keenly aware of when it is time to just hold her and when it is time to push her away and press the issue. Her current team is in tune with her as well in a similar manner. The new therapists and caregivers are not aware of her subtle signs, and so a new chapter begins.

Suddenly, for about 35 hours a week, I will not care for her directly. Everything is changing.

She is still on the waiting list for the facility closes to us, and close the pre-school (yeah that was planned…) I don’t anticipate enrollment until 2015.  Houston traffic sucks BIG time. It is a 2-3 hour driving experience everyday. I should not complain about this, but I am, sorry.

While we enter this season of everything changing, we have also noted changes in everything regarding Savanna’s abilities.

As we have weaned down her [single] medication to half the dose she was taking, we have seen a marked increase in memory, visual acuity, and coordination. Is it medication related? Who knows. It could be her natural developmental progression. I find little scholarly information available about effects in 2-year children on this medication.  To me, she seems dramatically quicker to react and respond to me, her siblings, her therapists, and the entire world around her. It has been quite an awakening.

 

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She is using utensils now to eat regularly. She has really taken pride in being able to either stick something with a fork, or place food on a fork/spoon and then eat it. Sometimes she uses the back of her hand to model the utensil. I have caught a few of these moments in stills and very short video clip.  Note the response at the end of the video – very appropriate.

Savanna blog (4 of 4) Savanna blog (3 of 4) Savanna blog (1 of 4)

 

 

 

Recently, I video taped another OT session with Nikki. Here is a great clip of her with a shape sorter.  She finally did it! During the activity she was very engaged. She manipulated the sorter to find the right hole for the shape. We have worked on this activity for nearly a year. I am so happy to see what she accomplished, but at the same time, typical kids learn this in a far shorter amount of time. What should I extrapolate from this reality with regard to her development pace or ultimate outcome? I know some of you are thinking, (Just be happy with who she is today!) Everyone wants the best, the most, for their kids. Savanna is no different from that regard. I dream big for Savanna. But this accomplishment, while a great achievement on its own, is easily interpreted with an ominous uncertainty on my part.

 

 

Another example. Coloring. We have worked with Savanna on coloring (scribbling of any type, on anything, with any type of marking device), and only in the last few months has she started to “get it”. She sees her siblings coloring, and wants to participate, but just cannot for reasons related to cognition, visual motor integration, and coordination.

I have never worked with Austin (her twin) on coloring. Again, he sees his siblings coloring, and wants to try. At 2 years old (albeit almost 3), he decided he wanted to color something recently. I instructed him this way (more or less) “The crayons and markers are on the table. Get a coloring book, tear out a page and go to town.” Yes, his 4-year-old brother was there too, but he was engrossed in his own masterpiece. I did not help him at all during this time as I regularly have enough to manage. If he is being quiet and in sight at the table coloring, what can go wrong? (Yeah… that is another blog post altogether!) Savanna colored something in a highly supervised and prompted environment with a therapist. Here is a picture of the two results.

 

savanna blog coloring pic (1 of 1)

 

Some would say it is not fair to compare her to a normal kid. Really? This is what happens everyday. Not just by me, but by most who interact with her. What is up, and what is down? Does she need this or that, or not need this or that anymore? I am not trying to over-analyze the situation – don’t take me the wrong way. Simply dismissing my observations and analysis does not equate to an irrelevant or non-existent situation.

Make no mistake: Savanna is excelling. She surpassed my expectations and those of many professionals who met her before she was a year old. It is time for me to change my goals, not just for Savanna, but for me as well.

I look at this final picture and I see a metaphor flash before me of our last [almost] three years with Savanna. As I watch her climb to the top of the slide, I see our life challenged with fear, heartbreak, mourning, anger, rebirth, remaking, extraordinarily complex parenting work, and now, maybe we reached a point of inflection in our lives; she in hers. To ABA we go!

-dad

Savanna blog (2 of 4)

Dare to Dream

1 year, 4 months and 7 days since the completion of Savanna’s TPO resection for seizure control.

Savanna recently had an MRI to examine the surgical site in her brain and a 23 hour VEEG to observe and characterize events and behaviors for a 12-month post-surgical follow-up meeting with her neurologist.

Happy! Happy Happy!!

Happy! Happy!! Happy!!!

The MRI impression is that the surgical site appears unchanged from the imaging results at 6 months post-op. No signs of problems related to the surgery or anything additional elsewhere in her brain. The EEG revealed that concerning behaviors were not related to epileptic activity.

Just playing around during my EEG.

Just playing around during my EEG.

Yeah, I have done this before. The suitcase was filled with favorite toys and foods.

Yeah, I have done this before…

MRI day. Not happy camper.

MRI day. Not a happy camper.

This means she is what we call seizure free (SF in the internet world).  In the medical community, Savanna’s outcome is still Class 1a on the Engel scale. This is as good as it gets in terms of seizure control.  Awesome!

The Shape Sorter. Again. Again. And, again.

The Shape Sorter. Again. Again. And, again.

The Shape Sorter. A must for a toddler during a 23 hour EEG.

The Shape Sorter. A must for a toddler during a 23 hour EEG.

Well, what does this mean in her everyday life?

It means the power of prayer is real. I believe God works through us all. While He allowed Savanna’s suffering, He answered collective prayer through actions of her doctors inspired to empower their God-given intelligence and ability.

It means we are witnessing development which we might not have otherwise.

I moved the stool myself, and turned on the light!

I moved the stool myself, and turned on the light!

It means we are witnessing His divine power as Savanna climbs out of the valley of global sensory reintegration created from forced normalization of her brain activity and subsequent reorganization of the neural network. Savanna thankfully exhibits a persistence and perseverance that you cannot teach. At times, she wants to learn; she wants to show us things; she wants to exist in our world. This is when the camera comes out, because we knew it was in there and we are so happy to see it come out. And then at other times, it is just difficult. She disconnects, and seems to wonder aimlessly through her own world on a path I just cannot see or understand.

For the first time…

For the first time, she is eating and drinking on her own in a manner that is adequate to allow her to thrive.  Six weeks ago we removed the feeding tube. Savanna is now 100% orally fed. She is able to try food in larger quantities and react to the textures, smells, and tastes. For the first time, I have been able to really hone in on how her diet affects her mood and behavior.

For the first time, we are observing fine and gross motor skills that are close to the low-end of normal. If you were to see her on a playground, you would not immediately see a difference between her and other children her age. But, it is there, lurking just beneath the surface of awareness for not only the casual observer, but also for her. It is significant, and it is serious. Sometimes these complex deficits rear their ugly head with an unusually awkward fall, or sudden, invisible playtime-ending problem. In general, I am highly in-tune with Savanna and plan accordingly. But recently, for the first time, she is often perceived equal in ability to her twin brother.

For the first time, we are witnessing dramatic acceleration in her receptive communication. (This is where she understands simple instructions or auditory communication.) Her cognition is improving daily, which allows learning new sign language at a quicker pace. At this point, the communication is her biggest barrier to a happy life (for us too!).

For the first time, we are seeing times of appropriate social interaction with her siblings. She exhibits persistence worthy of saying she is ambitious in catching up developmentally. She has moments of appropriate empathetic reactions to others. At times she is even deliberately mischievous, just like a normal 2 year-old! I see her interacting with her twin brother like I have not in the past. They sneak out together after breakfast to get on the trampoline, or play crazy games of laughing out loud and running from wall to wall in the house. It is so awesome to see knowing what I know, and something I was beginning not to expect at all.

A short video clip of Austin and Savanna on the trampoline… Austin can open the door, so they conspired, snuck out unseen. Savanna’s compulsion with closing doors meant, I didn’t immediately notice they had left! Then, I saw them. I saw playing. I heard laughter. I felt the need to start the camera.

 

We recently went on our summer pilgrimage to the homeland (KY and VA). This has normally been quite a trip for us, slathered with worry (from me anyway) and hampered with impediments related to Savanna’s condition.

For the first time, I did not pack a suitcase full of DME (durable medical equipment),  or supplies related to tube feeding. I did not pack a duffel bag full of medication, most for “What if?” scenarios.

Extra Goldfish, Pringles, and apple juice replaced cases of enteral formula (not exactly a nutritional even trade, but I will take it!) I did not pack back-up stuff for back-up stuff.  I took 2 oral syringes, a bottle of prescribed medication, and some rescue medication for good measure. For the first time, I did not install the roof box to carry all the extra stuff. It actually seemed kind of easy and normal travelling on an insanely long 3400 mile road trip.

Savanna had many great periods and days on the above mentioned “vacation”. She did have a few bad days too. While most want to see her as ‘normal’, this is something I just would never mention about our other kids knowing what I know now. No, she didn’t seize, but once we lose the happy place, it sometimes is difficult to get it back in the same day. On those days, all the best laid plans start to boil down to “Who is going to hold Savanna?” I know it sounds simple, callus even to the reader/parent who might think it is not a big deal – holding a child. And to those readers, you are right – I am whining.  But, I think the analysis and commentary are relative.

Rebecca and I are both still somehow in ok  shape after this journey. We are experiencing the physical woes all too familiar to parents of special needs children. Holding Savanna is not difficult per se`.  Holding Savanna for extended periods standing up, moving around, trying to complete the normal tasks of life, all while cantilevering away to balance her (as she naturally leans away instead of into us) is a different ball game altogether. Our backs are paying the price, and we are more conscious now, giving each other time to workout regularly. We find the workout routine is less about vanity or leisure, but more about necessity to build muscle to heal and mitigate current problems and perhaps delay further injury.

Here is a very short clip of her on the tube on the lake.

 

 

Do we dare let ourselves dream about what might be for Savanna? Before we drift off into never-never land, I would like to share some other “firsts” during this last few months.

For the first time, I can see the emotional derailment and predict the ensuing behavioral train wreck with good precision and fair accuracy. More clear now are the signs of disengagement from her environment. She loses all interest in things right in front of her. She shows no interest in many items that typically soothe her, except a very specific blanket that has a magical calming effect. She will not just want to be held, she will demand to be held. And if you can’t (or won’t), the path to the train wreck begins.

The path has stages and factors that affect how quickly you arrive at your destination, which is the behavioral train wreck or urban term “meltdown”. She will whine first, that kind of “I’m not happy whine…”  The whine becomes a cry. This process can take while, but we are learning it can also happen quite quickly.

The train has derailed at this point. I have learned it possible to avoid the worst outcome if I intervene appropriately.

The cry leads to stumbling or stammering like a drunk all while dragging her blanket. She will either 1) run into to something like a cabinet corner, wall corner, or door jamb on her right side (where the dense hemianopsia affects her) or 2) fall down hard by tripping on the blanket or something in the sea of ‘things’ on our floor that seems omnipresent. This leads to the scream of “Hold me now!“ and that of “Damn that hurt!”

By this point, I have modified my plans for the day somewhat, and am holding her (sitting if possible).

It is difficult to recover from this series of events. I try to push through some days and it ends up generally alright. But, sometimes it doesn’t go so well.  Sometimes this process takes 5 minutes. And, other times 5 hours. It really depends on things I am not knowledgeable about yet – or I would have addressed them intelligently.

At times I witness her eye deviate to the right (opposite what was observed before the resection) and this tempers my elation about her future. Diagnostics (mentioned in the beginning) have indicated nothing abnormal about these behaviors, but it is troubling as a parent given the history.

I joined the support group that our epilepsy program sponsors and attended meetings for the last few months. If you want a dose of reality as a parent in my shoes, this is the prescription. This group has been a great find though, as I learn more each time I attend.

For the first time, Savanna was evaluated independently (without me present) for ABA therapy, ST, and OT through an ABA provider locally here in Houston. ABA is Applied Behavior Analysis, and a method of intervention and therapy for those suffering the symptoms of ASD (Autism Spectrum Disorder). It sounds weird, but I liked it and I disliked it all at the same time. I knew she would struggle with new people and new activities. But, I also knew it would be a very good judge of where she is functioning with respect to interacting with the public.

The Preschool Language Scale (#5) and Functional Communication (Revised)  Profile toolkits measured Savanna’s communication abilites, and resulted in a mixed scores (all pretty low) higher/lower for receptive/expressive communication respectively.  This agreed with the evaluation results done by ECI at 32 months. The Verbal Behavior Milestones Assessment and Placement Program toolkit showed the way for an ABA therapy plan, recommending 35 hours per week of this type of therapy. OT skills measured using the The Peabody Developmental Motor Scales where she qualified for applying the Beery-Buktenica Visual Motor Integration subset revealed a score just a tick below normal in one category but, quite low in another. A calculated quotient score result was “poor”.

I received the reports in the mail and was not surprised at their conclusions, I was disappointed though, I have to admit. I interpret their conclusions with caution though, as none of the therapists were familiar with Savanna. But, this was a first: Savanna on her own for about 3 hours with people she had never met, doing things perhaps she may not have done in “just that way”, and no train wrecks. It was a good experience overall. (Thankfully, they were all familiar with dealing with kids with such challenges.)

Overall, this news about seizure freedom along with critical thought about our faith precipitates a giant sigh of relief. It allows moments where we take a deep breath and absorb the joys of life. Her experiences, our experiences, so early in Savanna’s life make witnessing her achievements that much sweeter.

Finally, we said goodbye to Ruth, our Au Pair from Australia. She was a big help with the kids. Maybe one day we will go down under for vacation and pay her a visit. May God Bless you, Ruth.

Ruth, our Au Pair from down under, has returned to the outback. She was so much fun, and we miss her a lot.

Ruth, our Au Pair from down under, has returned to the outback. She was so much fun, and we miss her a lot.

-dad