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

5 thoughts on “5 Years Seizure Free!

  1. great to read the update and 5 years seizure free!! amazing. Thanks for sharing the ups and downs… it’s wonderful to read about your beautiful family.

    wishing you all the best,
    Sally

    Like

  2. Thank you so much my amazing Superman Husband! I’m so grateful to you for documenting this journey and for everything that you do. This is your most eloquent, beautiful post yet. We are blessed.

    Like

  3. I’m so happy reading this words, and all the photos and videos made me smile. So happy for Savanna, and so happy for you. We don’t know each other in person, but for me all of you are part of my life, due to the circumstances that bind us. I will be happy to follow the facebook page and all the progress your little Savanna makes.

    Like

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