5 Years Seizure Free!

It’s early in the morning on a school day and I hear a somewhat rhythmic, one-step-at-a-time sound “thump-d-thump.”  I know right away who is coming down the stairs, one step at a time and left foot first each step.

As Savanna hits the floor on her last step, she exclaims proudly “TA – DA!”  Her body language tells me without words, “Look Dad, I got dressed all by myself!”  She is usually holding one of her small blankets with her finger inside the tag loop.

It’s been nearly 2 years since the last update on Savanna’s progress.  So much life has happened since the last post.  And, it feels like it happened so fast!

Too fast.

Too quickly, it seems, our kids grow, learn, and mature.  Sometimes I don’t feel like I’m leading as a parent, but rather just along for the ride.  A few pictures…

The #1 question I field is “How is she doing in school?”  The “elevator answer” is “good.”  But, honestly it is not that simple.  It cannot be standardized or reduced to a simple metric of performance despite our societal expectation of an A-B-C scale (or check-mark/no-check-mark in the case of kinder).

Since the last post, Savanna has discontinued all formal services.  Part of the plan of care discontinuing facility-based ABA was enrollment and surveillance in a full-time preschool.

Well, Savanna completed 5-day preschool with grace and a bright future in front of her!

Savanna learned.  She helped others learn.

Savanna smiled and laughed.  Savanna smiled and laughed with others.

Savanna participated in ways I could not envision in the beginning of this journey after educating myself about her prognosis.  Leadership was encouraged in her preschool and Savanna was right there with the others.

Line leader.  Prayer leader.  Lunch time helper.  Flag holder.  Story time leader.

And just when the days started to feel routine – almost predictable – everything changed.  I was teary-eyed through her graduation ceremony.  Kindergarten here we come!  And I should remind everyone, Austin was right there with Savanna.  Austin is like an Angel sent from God.  Savanna and Austin have a very typical brother-sister relationship today and only recently has that developed.  God knew the plan.  We needed to wait for His timing.

Her preschool teacher has a son entering college who also went through a resection surgery for epilepsy.  What are the odds?  God has put us right where we find ourselves.

Once a dream, I waved good-bye as Savanna eagerly climbed those steps on that big yellow school bus with her brothers on her way to kindergarten.  Such a bitter-sweet moment (for any parent!)

I shared some concerns with her Kindergarten teacher.  I feel quite certain Kindergarten teachers hear all kinds of things from very concerned parents about how their kids will adjust to this new routine.  I didn’t feel ‘the cold shoulder’ from her teacher necessarily, but could definitely sense I was number 18 of 21 to express “concerns” about their child.  I retreated somewhat and let the first half of Kindergarten just happen.

Savanna has a complex visual field cut (a homonymous hemianopsia, right side).  Her learning pace seems slower than her peers and this tends to also lead to slower generalization of skills.  We don’t know is how this visual field cut is affecting her learning ability but anecdotal evidence shows it is a significant impairment.

Savanna has demonstrated she has a sharp mind as of late.  But, the field cut is profound and is likely affecting her in my mind.  For example, Savanna knows all her kinder sight words (or most) – but has a very difficult time reading those same words in a book.

Her teacher has now come to us with progress reports where she indicates Savanna needs more help.  She does well in a very small group setting but struggles in larger group environments.  She is kind of alone and doesn’t have any friends in the class during larger group circle time, etc.  I began to share her story with more people at her school and this time I found a more receptive audience.

Here are some pictures of representative work from large group sessions, supposedly mostly independent work.  I have been told Savanna gets a lot of attention in these situations (and Austin gets almost none, his work is on the right side in each picture).

 

This newfound traction is now leading to an IEP (Individualized Education Plan).  Once again, I find myself telling her story over and over to each new person who calls in charge of _____________ (fill in the blank) in her school district.  They admit to me they have observed Savanna in class and had to ask twice which student was Savanna.   I explain to each one of them the power of God’s Grace through Savanna’s Journey.  They didn’t ask to hear the Gospel of Jesus Christ, but it was well received by all.

As Kindergarten comes to an end Savanna will have an official IEP (#2 actually).  We will likely be adding services over the summer and perhaps indefinitely to help her.  I have to say this kinda feels like ‘old times’ for me.

I say all that above, to answer the question “How is Savanna doing in school?”  Pretty good all things considered I think!

In 2017, I started “The Seize Hope Fund”, a separate website intended to share her story in a different way and enabling people to make charitable contributions to help others like Savanna through research and treatment.  You can visit the website here: The Seize Hope Fund.  There is a video out front that tells her story in a simple yet powerful way.  If you have not seen it, I would urge you to check it out.  The donor advised fund through the NCF is where people can make a charitable contribution, and 100% of donations are directed to research and treatment for other kids like Savanna through her doctor group.  I must say, I had expectations on the response to this fundraiser.  I was very wrong that has been extremely humbling.  The journey continues.

Savanna is amazing.  She can be loving, sweet, and quite devious!

“Devious?” you ask.  Yes.  Here is an example.  Our kids head to the bus stop on our street, which is where the sidewalk ends.  We have a raging fire ant population.  Our boys will drop their backpacks and run down the grassy easement to “race” along side the bus as it turns down our street.  They deliberately watch where they drop their backpacks.  Savanna will pick-up Austin’s backpack after he is gone and set it on a fire ant mound, and then run away.  Such a little stinker!

Savanna is a Daddy’s girl, but only wants Mommy to brush her teeth; Mommy to help her pick out clothes; and to go to the gym with Mommy.  She won’t say “good morning” or “i love you” to Mommy without prompting 99% of the time.

Tristan who does so much for Savanna, is absolutely unrecognized be her.  She will barely say his name in his presence.  If we ask her who do you love?  She will only point to him (or say “him”) with zero eye contact regardless of positive incentives.  Tristan is old enough to have his feelings hurt while he realizes how Savanna is different.  It is hard to watch as parent.

Some of these behaviors make me sad and simply cannot be seen as normal or typical.  If in her own element where the goal is “everybody just be happy and play”,  you won’t see this.  Explaining this to others is difficult to the point where I rarely mention it these days at all.

Savanna loves her Kindle Fire tablet, playing with her brothers, jumping on the trampoline, swinging, and riding her bike!  (We are about to give the bike another try without training wheels!)

Savanna is 5 years seizure free; 3 ½ years medication free.  This is a big milestone in her journey.  It fell on Easter this year.  We celebrated the empty tomb first, and then her victory later in the day.  Jesus is the true savior!

I have also started a Facebook page for her journey.  We will post there more often.  If you would like to follow her journey I would encourage you to check this out too.

https://www.facebook.com/The-Seize-Hope-Fund-184099412076712/?view_public_for=184099412076712

I leave you with a short video montage of a few little slices of life.  God Bless each of you.

Ken

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.”

Luna’s Story: Update #2 – Never. Give. Up.

A 6-minute video.

How can a 6-minute video video catalyze so much activity?

1:30 into the video I see one process happening in Luna’s brain; the happiness in her eyes melts away while fear and terror are evident as her brain struggles to stop a raging electrical storm.

After a 75 sec complex partial seizure,  a separate process is evident: Infantile Spasms which clusters for several minutes.

It is a remarkable video, one that captured her seizure disorder at a very early stage, and before almost all mediation.  I am not sure I would have been so insistent Maria continue to seek second opinions after the Norwegian healthcare system more or less gave up on Luna.

If you are unfamiliar with Luna’s story, here is the first post from November 2014.  I want to share some of the highlights of her journey in this post.

Nearly 6 months after the onset of Luna’s epilepsy, she received her first 24 hour VEEG.  Prior to this, it was only short EEG’s without synchronous video.  By this time, courses of steroid and hormone therapy (synthetic ACTH) were tried with some effectiveness, but almost immediate relapse upon completion. Luna was on several conventional anticonvulsants and Sabril.

If they captured the overnight VEEG data before all this intervention, what might be different?  Difficult to say, but very interesting to the point of heartbreaking to consider.

MRI impressions were normal and did not correlate with the clinical presentation.

Finally, negative targeted genetic and metabolic testing rendered Luna’s case more or less closed in Norway: etiology unknown.

Take the pills, accept her as she is.  She will be disabled, was Maria’s translation of what she was told.

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I advised her: Do Not Give Up!  I always felt there was hope for Luna.

Why?

Impressions from early EEG tracings found epileptiform discharge activity in both hemispheres, but more in the left hemisphere, and very close to the midline of the brain and almost always with overweight and pre-dominance in the left hemisphere.  Often there was bilateral slowing.  The slowing was frequently found to a greater extent in the left hemisphere.

To me, the remarkable video was a sign that all the generalized activity could be irrelevant if there was a focus discovered.  This theory is difficult to prove given the focal events ceased after the steroid therapy.

An analogy:  Imagine if you were spraying water mist or hair spray on your child’s head.  And you were standing on their left side spraying towards the head around ear level.  As you spray, you move the spray nozzle around, and as you get near the top of their head some of the spray easily falls on the other side of their head.  At first, it would be clear that some of the spray from the left side fell on the right side.  But if you just never stopped spraying, after a while it is impossible to determine if you sprayed some from the right and some from the left independently, especially if you were brushing the hair during this time.

Maria began looking outside of Norway for help.

Helsinki, Finland has a well-known comprehensive epilepsy treatment facility.  Maria engaged the doctors there as did I. Uninterested, they referred her somewhere else in Sweden that was not a good fit for Luna.

2014 began with a trip to Bonn, Germany.  The financial cost was high.  But, the emotional toll was higher, as once again negative MRI findings ended the investigation despite the presence of a focus in the left hemisphere found in a long-term VEEG.

Dr. Sassen reviewed the early videos and agreed about the focal nature of the episode in the one very remarkable video.  Why then did he not recommend more diagnostics?

Luna was weaning steroid therapy during this time and was experiencing seizure control; so no seizures were captured during the VEEG.  This lack of clinical seizures was likely to key reason additional diagnostics were not performed.

I remember the defeat in Maria’s words in emails, the misery, and emotional turmoil in the family.  Chronic seizure disorders in young children are well-known for disintegrating the family unit.  During this period Maria realized she had a marriage built on sand not rock.

By the summer of 2014, Maria was in contact with Dr. Von Allmen and Children’s Memorial Hermann Hospital here in Houston.  In parallel, Dr. Simon Harvey from the Royal Children’s Hospital Melbourne, Australia, also reviewed her case.

Dr. Harvey insisted she get a PET scan.  In a matter of days, Dr Harvey in Melbourne Australia ordered a PET scan for a child from Norway to be performed at St. Thomas hospital in London, England.  You can’t make this up!

The results indicated she should be a good candidate for surgical intervention. Finally, I felt like she broke through an invisible barrier in getting help for Luna.

Where can Luna receive such surgical care?

It wasn’t long before the USA became the only real option and Children’s Memorial Hermann Hospital was the natural selection.

They quoted $125,000.00 for investigation and surgery, far more than anywhere else.  But, Luna could get quick access to care here and could not elsewhere.

Maria created a fundraising page through one of the internet-based fundraising sites.  The response to Maria’s call for help was dramatic and surprising.  God’s plan indeed.

Like every step along Luna’s path, accessing pledged monies wasn’t without significant challenge.  Global political tension between the US and Russia made transferring Russian monies difficult with credit cards and wire transfers – the kind of transactions needed in this situation to quickly fund the planned events.  Her friends came through with great success!

We don’t know all the donors, but whoever you are, you played a vital role in changed lives.  Thank you for your kindness and generosity.  Not only did you help change Luna’s life, but you illuminated a potential path for others like Luna.

A pause.

Maria didn’t have the necessary funds CMHH demanded.  And, yes, ‘demand’ is the correct word.  Global political tensions and resulting monetary policy restrictions delayed the transfer of some pledged funds.

What to do?  Make the trip, or wait until she secured the funds?

I remember telling her “Just get here.  And, we will figure out the rest.”  This was our moment we have been waiting so long to happen.

Despite many setbacks, roadblocks, and barriers, Maria and Luna made it to Houston.

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After evaluation and consultation with Dr. Tandon , the chosen path at that time was a TPO resection/disconnection.  The hope was that remaining cortex was not implicit in the epilepsy.

A hemispherectomy was discussed as the likely procedure to provide the most control, but also with the most consequence.

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The procedure had a remarkable positive effect on Luna, but unfortunately it was clear she needed more help as her epilepsy continued uncontrolled.

Devastated, Maria returned to Norway with Luna to collect her emotions.  Here was a post I made just before she departed.

Emotionally knocked down, she stood back up.

Maria reorganized her life and relocated to Houston seeking further care for Luna.  She secured a job such that the company paid for the transfer.  She leased a house, and a car.  And began engaging in all the things that go along with living in the US.

[This person, this Mom, Maria, has a wealth of courage and love in her heart.  She used to get tired and say “I have no forces left”.  I always chuckled at her word choices, but she did have forces left.  She is human yes, but has superhuman ‘forces’ in my book.  As I reflect on all she conquered to get real help for Luna, our journey with Savanna pales in comparison.]

Luna diagnostics second round CMHH 2015

American medical insurance in place, a new round of surgical evaluation was initiated.  The results were confounding.  Discharges still in the [connected] left and right hemispheres.  Dr. Von Allmen recommended a larger resection, likely including some motor cortex.

Dr. Tandon wasn’t confident that would help but was willing (as I understand it).  He recommended a palliative procedure with the intent being to slowing down the epilepsy progression and perhaps illuminating the focus more clearly, without serious consequences.

The discussion devolved to a point where Maria was left with less than ideal confidence in the plan of care.  Dr. Von Allmen, frustrated, referred Luna to another pediatric facility.

Luna’s case I guarantee while perhaps not one-of-a-kind, is extremely unusual in presentation and overall path of care.

Using the MEG study from Houston, the team in Austin (Dr. Clarke and Dr. Lee) went to work.  They performed another 24hr VEEG and installed several depth electrodes.

The Austin team ultimately followed a similar path suggested by the epileptologist in Houston, which was a larger resection.

Prior to the surgery, I heard discussion about the ‘incomplete’ or ‘not optimal’ nature of Luna’s first surgery.  Parts left connected that ‘were missed’ according to accounts of discussion between the Austin team and Maria.  I struggled with the motives of this discussion.

These statements sounded like conjecture, a moment to elevate one’s self without any responsibility. That would soon change once they too operated on Luna.

I think in general Maria felt discussion with the surgeon in Austin was what she needed most.  I was not present, but the account of the conversation sounded very positive and reassuring.  It sounded extremely specific in what was ‘done incompletely’ previously, his plan to ‘fix it’, and a near guarantee Luna would be ‘seizure free without motor skill loses’.  Who wouldn’t want that in this little world, right?

[Luna’s case unfolded such that it appears Dr. Tandon was likely correct in his assessment during the second surgical consultation here in Houston.]

On August 14, 2015, Dr. Lee per his language, ‘completed the TPO disconnection’ in Austin, Texas at Dell Children’s Hospital.  Luna is such a strong little girl!

Luna Second surgery

Unfortunately, Luna seizures started again very soon after this surgery.  And Luna experienced severe hemiparesis, even 4 months post-op.

A corpus callosotomy (the palliative procedure rejected in Houston) and a VNS was implanted for an extra measure of control during a third surgery shortly after the second one.

After the corpus callosotomy, the seizure presentation was remarkably focal in nature. Only right arm and leg involvement during the events.

This was a big and positive change!  And it indicated, the right arm and leg were still connected to the motor cortex to some degree.

[Why the palliative procedure?  After all the diagnostics in Norway, Houston and Austin, no one could say for sure that the discharge activity onset was only in the left hemisphere.  This procedure could positively determine this with minimal deficits.  This procedure can stop or slow the progression of the epilepsy by closing the pathway between the hemispheres.  This procedure won’t stop seizures, but it can stop focal seizures from generalizing.]

The fourth round of evaluation revealed what we all prayed for all this time:  All discharge activity was localized in the left hemisphere!

Amazing!

Now, it appears complete hemispherectomy is Luna’s best option.

January 29th, 2016 Luna underwent total left hemispherectomy, during her fourth surgery.  This radical surgery enrolls Luna into a very small sorority of patients worldwide.

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[Epilepsy surgery timing is a research field all its own.  The mantra is ‘the sooner the better’.  But a misstep can lead to unintended disastrous consequences.]

What does this mean for Luna – a hemispherectomy?  No one really knows.

When you study the situation, the outcome is a spectrum, with underlying etiology being a big factor.  Therapy methods and theories are evolving as well.

Medical science can’t tell us why Luna’s left hemisphere produced epilepsy.  In this light, Luna, and others, are ahead of science to some degree.

 

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For sure, it means Luna will function with half a brain, unlike you and me.

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It also means Luna now can achieve her best ultimate outcome with the greatest chance at living seizure free and possibly medication free.

After 13 months here in the US, Maria is starting a new life.  She remarried and is moving to Dubai, UAE with her new husband Roman and plans a return to Norway.

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Romans 8:31  “What, then, shall we say in response to these things?  If God is for us, who can be against us?”

I cannot lie, I found this time of Maria and Luna’s departure quite emotional.  Watching that remarkable video brings me to moment of profound clarity.  Where would Luna be today had I or someone else not responded to Maria’s call for help in the summer of 2013?

Thank you Lord for leading me into this family’s life.  Thank You Lord for inspiring Maria to post the videos of Luna when she did.  Without Your guidance and leadership, all of this would not have happened.

All of this from,

…a 6-minute video.

-Luna’s friend

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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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.

Luna’s Story: An Update

The meeting with the neurosurgeon prior to the surgery described the treatment scenarios on a scale of least invasive to most invasive, along with a likelihood of success in Luna’s specific case. The chosen path was not the most invasive, leaving a portion of her left hemisphere connected and functioning with the hopes it is not involved in seizure onset. This decision was based on experience and the best medical science available today. It was not a mathematical formula with a guaranteed outcome, but rather a first step. One that if successful, leaves her the most natural motor function possible. If you didn’t read her initial story, you can find it here.

On November 6, Luna underwent what is called a TPO resection/disconnection in her left hemisphere. A known consequence is significant visual field cut in both eyes on the right side, a dense right sided hemianopsia. The actual procedure went very well and Luna recovered quickly. Here is a picture of good news from the waiting that day (Savanna was not particularly photogenic this day!)

 

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Luna like most in this immediate time following surgery, is quite unhappy often.  She doesn’t understand what happened to her or why. Her head itches, and probably hurts, but she can’t tell us in a way we immediately understand. She cries, and we do what all parents do, we just try to make it better any way possible. Her behavior and demeanor reminds me so much of Savanna during these days. I wish the pertinent doctors could be more aware of what this is like. When you try to speak with them about this, they really just don’t seem to care or have anything to help in the way of guidance, wisdom, or advice. I have come to realize they just don’t really know how hard it can be; how exhausting; how stressful. It is not to a fault in any way, it is just reality. You just can’t know unless you live through it personally.

Maria is returning to Norway completely emotionally drained, mentally exhausted, and physically hurting from holding and carrying Luna far more than you would ever carry or hold a normal 19 month-old.

The thought of being on a couple of airplanes for nearly 18 hours is just daunting to me, but she is determined.

So how is Luna?

 

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The incision site looks great. She healing physically very well. She is not experiencing any complications.

Luna is much more calm overall. She is more focused and engaged with her environment.

She is changing rapidly during this time of recovery.

Some noticeable suspect activity has been seen. Luna needs more time to heal before officially ruling on this suspect activity, and a chance still exists that this activity will dissipate on its own.

She has some sensory processing issues she needs to work through, a process very difficult with the constant disturbance in her brain. Now she has a real chance to overcome these challenges, and in the short two weeks post-op we are already seeing these changes.

Luna has to tell us what she needs, metaphorically speaking.

 

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Prior to the surgery, I worked and worked with Luna to stand and take steps. The hypotonia in her feet and legs is significant. She stands but with locked legs, and muscle grading is poor – much like our Savanna experienced. After surgery, she is so much more focused and able to “think” about something such as walking. Here is a short video that is just amazing. I could not have done this with her a couple of weeks ago, without more or less carrying her through the process. She would have tried to turn left circles the entire time and cried while doing it, or as Maria calls it ‘protesting’. Now, she is very motivated.

 

 

What do you feel as a parent in this situation? What do you do next?

Well, first, you have to learn to wait. This is harder than it sounds, because the academic body of evidence is growing to act sooner rather than later with pediatric cases.

As a parent, your world hinges on the surgical success, something that can take some time to appropriately cast judgement.

You research others’ stories with an obsessive compulsion that can render you insane. With red eyes, you seek out that other child who looks just like yours; has seizures just like yours. What was their treatment path and outcome? How can I interpolate and extrapolate their path into mine? You fixate on their story, for better or for worse. But this is what we do as a parent of a child with intractable epilepsy in this ‘Google-centric’ world.

While not entirely healthy, you come up for air once in a while and find scholarly articles to educate yourself in an objective manner. Then you remember discussions with the pertinent doctors, the ones you put so much trust into already, and let their guidance help show the way. You go back and re-read diagnostic findings, again to help educate yourself.

You second guess every decision made in your child’s care. You realize that you cannot go back and relive anything, try anything differently, act differently or more quickly. This time has passed and all you have is the future, on a new path post-op.

To use a very American analogy… At this juncture, as a parent, you have left the college sports ranks and joined the professional athletes. When you run through the tunnel onto the pro playing field/court, the same game is very different. And as a pro, success means embracing this change. You have to expand your mind. You must adapt to a larger set of variables, more potential consequences, and then re-calibrate your mind with regard to what “success” really means. Going back to the college days, is no longer an option.

On top of all this brow-beating and compulsive ‘googling’, Maria has secured a work position here in Houston for the next couple of years and sold her beloved house in Norway. She returns to Norway today to finalize her move to the USA for employment and spend much needed time with her other daughter. We will get to see her again in the future and look forward to seeing Luna’s progress.

IS Awareness Week: Luna’s Story

Here in Houston, an 18 month old girl from Norway named Luna awaits surgical intervention to control her epilepsy. Her mom knowing full well this is Luna’s only chance to get real help. She has experienced more than a year of uncontrolled seizures, with only a few brief periods of control on steroid therapy. She is suffering from Infantile Spasms, a very catastrophic form of childhood epilepsy.

Luna 11-6-2014

About a year ago, I came across a post in a FB support group from a desperate mom looking for help. She posted videos, and asked for assistance and advice about interpreting the video and what she should do. Already at this early stage, she was questioning the Norwegian doctor and plan of care. I reviewed the spine-tingling video, and saw right away a likely cluster of IS, and a second process that seemed very asymmetric in clinical presentation. She was so similar to our Savanna, but yet so different.

She explained the treatment plans in place from her neurologist. She translated documents for review. I advised her how cases like hers are handled here in the USA at a facility familiar with IS, the kind of tests usually ordered and why, and why it is so important to move quickly and accurately with the workup.

As the workflow progressed in her treatment, at a small hospital in Oslo, I remember experiencing a sinking feeling after her clinic appointments with her neurologist. It just didn’t sound like their doctors saw the situation as an emergency, nor did they have the resources to appropriately evaluate Luna or treat her such that she would have the best chance at seizure control.

Two things I learned over the past few years dealing with IS/childhood epilepsy: 1) Time is Critical, and 2) Workflow (the process) is Important – especially when the cause is idiopathic or cryptogenic. This is not to say a symptomatic case should not be treated similarly. Etiology can play a significant role in therapy choices or schedules.

It became clear after about 6 months, Luna simply wasn’t going to get the best chance at seizure control in Norway. We talked frequently and the idea of traveling away from Norway for help was born.

I kept having to remind myself, that Luna is in a socialized healthcare system, and this can be the way it is in these extreme cases in such a government-controlled healthcare system.  While Norway does have a more appropriate hospital for Luna, it was the access to the services that seemed draconian after seeing what is possible in other countries, especially the USA. For those that have lived through the nightmare of IS, can you imaging having to wait for nearly 6 months to get your first 24 hour EEG with video? Me either. Until that point Luna only underwent only 15 minute EEG diagnostics, without video.

High dose steroids were the only therapy that had a positive affect; producing brief seizure free periods. Several other drug trials failed to control Luna’s epilepsy and also resulted in marked negative side-effects.

Even a trip to Bonn, Germany, resulted in a “come back in six months” outcome, after diagnostics produced results insufficient to justify additional diagnostics. Here in the USA, those same results most certainly would have justified an additional scan or two. I remember being so let down by the results of that trip, beside myself at how different other countries view IS.

Finally, 10 months after her journey began, she was able to get an FDG-PET scan, (her first one!), only after a epileptologist in Australia called in the order to a facility in London. Another expensive “self-pay” excursion to another country, much like their visit to Bonn.

Luna

By that time she had also contacted our doctor here in Houston, and had arranged a consultation date.

Access to surgical services looked viable in EU and in AU. And the doctor in Melbourne seemed confident about what Luna needed. Suddenly, the outlook looked good. Timing became an issue in the EU as surgery was many months away, and access to socialized services in AU seemed out of reach after some effort.

Two months later, she arrives here in the USA, after having raised nearly all the necessary funds to cover the cost of a “self-pay” surgical workup and epilepsy surgery.

Austin-Savanna Third Birthday-17

A streamlined plan consisted of a week of diagnostics followed by a week of information review, then surgery the following week. Celebration!

Luna-2

Luna-3

2nd pedi epilepsy reunion-11

Then suddenly a question during the VEEG/LTM: Has she been tested for CDKL5 mutations? In that one second, the entire plan appeared jeopardized. A thorough review of  records produced no test results. Calls to the Neurologist in Norway produced no immediate answers. Surgery now on hold, a comprehensive targeted genetic panel was initiated. It took three weeks to get results, during which time the Norwegian Neurologist finally confirmed she was tested for a host of genes in question, and was negative.  Exhale!

So we have a new schedule for a surgical date. All is a go, again!

Then the unthinkable: she gets sick. A common cold, that of course produces the cruddy cough, and the sound of doom: congestion. Then it produced ear infections, which was icing on the cake.

How she made it nearly 5 weeks in our house without getting sick is beyond me. We are performing every possible prophylactic measure to get her healthy as the battle with Anesthia continues. Yes, battle is the correct terminology. The procedure Luna is going to undergo requires several players on the team. One is the Anesthesiologist. They really don’t care at all why she is there or the reason for the procedure. It is so frustrating when a doctor who’s only involvement in her care is that day’s events can derail concrete plans, for a clear runny nose.

There are two types of people in this world: 1) Those who say Yes, I can help! and 2) Those who just say No.

It takes work to say YES or be positive. It requires assuming more risk. It often requires making difficult decisions and sacrifices. It is a conscious choice to say yes and be positive.

It takes zero effort to say NO and be pessimistic. It requires assuming no risk. It requires no further decisions or sacrifices. It is easy to say No and be negative.

In this case….. It’s an over the phone diagnosis: your surgery is cancelled, and I really don’t care what you think. Call you neurosurgeon’s office and reschedule two weeks after her last sneeze. Just the Friday afternoon call a neurosurgeon enjoys about a Monday procedure.

This position minimizes the risk assumed by you and by the institution. Which is interesting because the other doctors and the institution have agreed to allow the neurosurgeon latitude to operate – which may not work – and yet still leave her with permanent deficits. But, wait! Patient Safety!

When in doubt, pull this one out: It’s All About Patient Safety! Sorry, but no surgery. This is like liberals using the race card in a debate when the know they have lost on the facts. It is infuriating and in this case quite insulting. Right, it is much safer to continue to suffer a catastrophic seizure disorder than the potential of a sore throat after surgery. Right. Any parent of a child like Luna arriving at this moment sees right through this argument. Enough said.

We have finally reached The Big Day. An emotional blender full of tears, anguish, and hope. All the sacrifice. All to arrive at this moment in time where you kiss you child goodbye, not 100% sure what is going to happen. May God keep our children safe and guide the hands helping Luna today.

Galveston Oct 26 2014_-16

Today is Luna’s last day to suffer from IS.

You can follow her journey on FB here.