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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The Emotional Roller Coaster

First, some housekeeping notes:

November is Epilepsy Awareness Month.

The Infantile Spasms Community on Facebook, is recognizing November 3-9 as Infantile Spasms Awareness Week.  The professional community is recognizing December 6-10 as Infantile Spasms Awareness Week.  This is sponsored by  the Child Neurology Foundation.

I intend to share stories from people affected directly or indirectly from epilepsy.  If you would like to share your story of how epilepsy touched you or your family, please contact me at ken lininger @ gmail com. (no spaces in the name)

Many of you know, we did battle IS in the beginning.  Savanna exhibited classic signs of Focal Cortical Dysplasia.  That is, intractable simple/complex partial seizures even though successfully controlling the IS.

Continue reading

6 months seizure free…

Six months ago today, Savanna underwent a complete TPO resection led by her neurosurgeon and epileptologist, Dr. Tandon and Dr. Von Allmen respectively.

The process started very early in the morning. About 3 pm we spoke to the epileptologist. Tears were shed. Hugs all around. Then we did it again at around 5pm with the neurosurgeon.

Each day, I thank the Lord for giving us a fresh new day, and pray it will be filled with happiness. (I don’t think he hears me everyday?) Each day I also ask for forgiveness for my sins of yesterday and His help to be the best husband,low res -7437 father, and friend today.

What has changed since the last post at 4 months?

low res -7647Savanna and Austin turned 2 years old on September 20th. The picture to the left is very different than a year ago! A couple of days prior, we participated in a Memorial Hermann Hospital marketing campaign highlighting the benefits of MEG technology. Our local ABC13 filmed the event and interviewed us and our doctor. The 90 second news clip is here. Rebecca’s full 12 minute interview resides on their website.

Foremost on my mind today, is that I don’t believe she is having seizures or even epileptiform activity, but I cannot say this for certain. She has reached 6 months without a clinical seizure that I have witnessed. Most doctors and surgeons would harbor a guarded optimism about her future, but at the same time would suggest this is a big milestone given the circumstances.

She has almost completed cutting her two-year molars. While difficult, it has been sweet to see her struggle through this period with relative normalcy. She simply could not experience this in the past.

She walks around the house at will. 2 months ago, she could only take a few steps, seen here.

She has learned to stand up on her own, without help from furniture.

She can safely navigate steps. We do not knowingly let her do this alone.

She can focus on an activity for more than 3 minutes regularly. This has been a huge step forward with regard to self-regulating her behavior.

She can point with her index fingers and can operate simple cause-effect toys.

She has started to deliberately put toys into a container, in a very controlled environment.

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She understands when you are not looking at her. For example, when you holding her while talking on the phone, she will deliberately put her hands on your face and try to turn your head to look at her. Or, she will ‘look around the corner’, to see your face. When she does this to me, it feels great as Savanna is still decidedly a Mommy’s girl – if Mommy is in the house. This indicates increased awareness and it is exciting!

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All of these milestones are wonderful to watch. This 6 month milestone is a breath of fresh air. It is reinforcement for me that the surgery, the hard work every day with her sensory diet, and the physical and developmental therapy, is working together to allow her to thrive. When I reflect on the what she has learned and how quickly, I believe the therapy has helped immensely.

It is not all cake and ice cream though.

While she is eating well, she is very finicky about what she eats. And, she still won’t reliably drink thin fluids. She will not suck at all. This is very frustrating. Yes, you can sit and spend 1/2 hour forcing her to drink 3-4 ounces of fluid if she is really thirsty. But she will aspirate – a lot. Right now she is very healthy and seems to clear her lungs well. I am not without pause here, as throwing caution to the wind is dangerous. All it would take is a moderate cold combined with aspiration of fluid filled with bacteria (such as milk or formula) and you could have a serious problem. I will be trying another feeding clinic in the coming months.

Now that she is walking, the visual field cut is becoming more clear. She has really hit things hard where it was obvious she was walking and just didn’t see the table or corner of the wall just off to her right side I know these incidents will dissipate as she learns to compensate. But, it hits really home realizing her visual field cut is large enough to most likely prevent her from obtaining an operators permit for a vehicle. I know some of you might think it is odd that I would think about that or mention it now. But she is doing so well now, that it doesn’t seem out of reach – much like it would seem for a normal 2-year-old.

I have noticed Savanna ‘pausing’ at times, and so have the therapists. I say ‘pausing’ not staring because while she is paused, she is not focusing on what she is staring at. You can put your hand right in front of her eyes with no response. These events don’t seem to affect her motor function and are short. She does always seem to respond to the sense of touch. Is it partial seizures I am witnessing? Probably not, but I am not sure. I am sure we will catch some of these events on an upcoming 23hr VEEG.

She has stopped saying the consonant sounds she was saying at 4 months. She was saying about 5 sounds with and without prompting. Now, she has other noises that include sounds like what you might hear ‘Curious George’ make, and a growling sound. Is it a regression? Is she intently focused on her new-found independence being able to walk, that this has been sidelined for now? Or is it…. something else?

She flaps her hand a lot when she is excited. It looks suspicious. Is she really saying ‘Hi?’ Or is it…. something else?

She has a fascination with putting her finger into holes. It dominates every therapy session and at times takes away from the session. Sometimes, without a fidget toy that has holes in it, I can’t even get through a therapy session. She finds dimples on plastic toys that looks like holes. She is fixated on finding assembly screw relief holes on toys, cloth loops, etc. She can be obsessed with inserting her fingers into such holes. I have to say the last week this activity has lessened. It was cute at first. It enabled her to regulate her behavior somewhat at first too, so I encouraged it. Is it just a developmental stage? Or is it… something else?

I recently took them to the pediatrician for the 2 year wellness checkup and flu shots. I completed the M-CHAT (Modified Checklist looking for Autism in Toddlers) and she scored really high for ASD. Because I have done my homework, I knew this was coming. Yes, she is delayed, but the loaded questions regarding ASD are not about development, they are about ASD. Her exome sequencing indicated a significant chance for ASD. And, ASD manifests in significant percentage of children diagnosed with Infantile Spasms. An evaluation is forthcoming in her near future.

If you were to see her today for just a short while after not seeing her for some time, these things I mention would not be part of the memory. I believe the questions about ASD are challenging to definitively diagnose or dismiss at this stage. That said, I cannot ignore what is happening or hope it just ‘goes away’ as that would be foolish on my part. I cannot ignore the science that I have subscribed to thus far. I believe early diagnosis and treatment is the best course of action.

She surprises me with her development at times.

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Her encouragement, although ambiguous at times, motivates me to lead her to success versus micromanage her challenges.

A short note about the rest of the kids.

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Tristan started Kindergarten this year. He loves it! He has always loved to learn and thrives in the structured environment. He is playing soccer at the Y this fall and is doing quite well. He recently ran in a Boosterthon FunRun race and ran about 2 miles. Mommy and Brandon cheered him on.

Brandon is something else. On the cusp of turning 4 on October 7th, he continues to say really off the wall funny things. He has always done this, but it continues to get more entertaining. Right now, he is participating in PRE-K4 soccer at the Y – (a very questionable use of funds 🙂 ) His first game, he just walked right beside the coach and held his hand. His most recent game, he at least ran and was able to kick the ball. He is very shy as it turns out, and I guess in Tristan’s shadow I didn’t realize it. He is protective of Savanna while being playful in way that she just loves. Hearing that deep belly laugh from Savanna when Brandon is playing with her is wonderful.low res -7492

Austin is doing great. He is so intent focused on keeping up with Brandon during the day, and the ‘big kids’ at other times. He has a lot of new words now and is growing up fast. It feels like his first year was just a blur. I am glad we have some video to reference!low res -7483

Ruth, our Au Pair from Australia, is working out really good. It has enabled me address a hernia repair that was long overdue. Our daily routine is working out well enough for me to start working out again and it feels great. Rebecca and I have enjoyed a couple of date nights – we almost forgot what that was like. Ruth has really been good for our entire family.

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