5 Years Seizure Free!

Posted on April 18, 2018 by kenlininger

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

Posted on April 1, 2016 by kenlininger

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.

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.

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.

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.

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…

Rebecca is more this style….

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.”

Badge of Honor

Posted on May 1, 2015 by kenlininger

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

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

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

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

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

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

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

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

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

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

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

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

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

Her daily social skills training team, lol!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Most recently…

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

Took some family photos…

Celebrated world purple day…

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

Celebrated Easter…..

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

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

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

Luna’s Story: An Update

Posted on November 23, 2014 by kenlininger

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!)

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?

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.

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.

Dare to Dream

Posted on August 7, 2014 by kenlininger

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

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

Happy! Happy!! Happy!!!

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

Just playing around during my EEG.

Yeah, I have done this before…

MRI day. Not a happy camper.

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

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

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

Well, what does this mean in her everyday life?

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

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

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

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

For the first time…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

-dad

2 Years Ago, It Was Christmas 2011, and…

Posted on December 24, 2013 by kenlininger

2 Years ago today, I was in a hospital with Savanna on Christmas Eve, a few days out from the life-altering news Infantile Spasms diagnoses bring. Like nearly all parents blindsided with this situation we followed doctors recommendations for a treatment plan without question. In reality, we were just trying to survive.

2 years ago, we didn’t know our baby had focal cortical dysplasia type I and IIa resulting in a lesion spanning the temporal, occipital, and part of the parietal lobes in the left hemisphere of her brain.

2 years ago, we didn’t know our baby would experience refractory complex partial seizures that would leave her severely developmentally delayed. The seizure activity was so frequent, her potential development was largely unknown.

2 years ago, we initiated advanced genetic testing for which we are still waiting on results today. Off-the-record phone conversations have revealed no definitive genetic cause, for reasons outlined in this post.

2 years ago, we had no idea our baby would (or even could) undergo radical surgery to rescue her developing brain from the intense seizures.

2 years ago, I had no idea that Savanna was in a small sorority of patients eligible for surgical treatment and how it is such a blessing.

2 years ago, I thought I was good father. I thought I was a good husband. I thought I was pretty smart. During these last two years, Savanna’s condition has cleansed me of many of these misconceptions. I am now better at all three. Absolutely nothing can prepare you for this situation as a parent.

2 years ago, I never dreamed I would stay at home and raise children, lead the care of a special needs child, attempt to manage refractory seizures; learn about epilepsy.

2 years ago it was Christmas 2011. I brought our baby home from a 9 day hospital stay that included her first big ‘diagnosis day’. You can read about the emotions of that day here (not well written, sorry!) I thought it was ‘over’; meaning, finish the ACTH and then she is okay right? For some yes, not for Savanna.

Today, I marvel at the progress modern medicine has allowed her to experience. Faith in God, following his guidance, and trust in his leadership has proved righteous.

Today Savanna continues to impress us with her abilities that advance daily. Delays are still present, but far less noticeable.

Today, Savanna still has challenges, but not seizures. That is nearly 210 days!

Today Savanna is not cured but, her epilepsy is in remission.

Today, we as a family thank the Lord for his guidance and support. I thank myself for listening.

Today, I help others blindsided with this situation. Savanna’s outcome thus far is not the same for all, and this knowledge is humbling.

We are in the middle of a trip to Kentucky and Virginia. The usual sicknesses have afflicted our family somewhat. It happens when you transplant an entire family to a new location. Overall, we are healthy and thankful for the journey. Being around family is great at Christmastime.

Have a Blessed Christmas everyone and safe travels!

-ken

Guest Post – Happy Being Trevy

Posted on November 7, 2013 by kenlininger

A thunderstorm of emotion washed over my heart as I read her recent essay entitled “4 years ago today…” I can relate with everything Danielle describes about their day in the waiting room as Trevor underwent a complete hemispherectomy to control the spasms. Our day with Savanna and her second surgery was strikingly similar. Their blog, Happy Being Trevy, has information about Infantile Spasms and how it affected their son Trevor and their family.

She has taken the time to construct a video of Trevor’s journey, their journey. The video is incredible and a great way to tell the story.

The link to the video is below. But first…

4 years ago today…

4 years ago today…we’d already hugged and kissed him goodbye by now. I’d run my fingers through his curls one last time. God, I miss those curls. And kissed every inch of his sweet face. Inside my heart was screaming “NOOOOOOO!”. There was an intense soul battle raging. One part of me desperate to snatch him off that stupid gurney and run away to the furthest reaches on the earth. The other part knowing we were here to rescue him. Knowing we HAD to be here. My love for him was the gravity force that held me down that day.

4 years ago today…we survived the longest, the most emotionally draining 13 hours of our lives. No day before could compare and no day since has yet to. We spent that day in a waiting room at Detroit Childrens. Feeling so very alone. So far from home. We wanted to wrap our arms around Toby and Bristel but were thankful we had left them behind. Because this was too much for us. It would certainly be too much for them. We watched party after party called to collect their loved ones from the recovery room. Until most of the lights were turned off in preparation for closing down for the night. Until the secretary had long gone home. And security had begun making rounds. And we, who were the first in the waiting room that morning, were also the last to remain. Until I thought if one more minute went by I was going to explode into a million pieces and float away. Because the emotional intensity was that strong.

4 years ago today…I sobbed when the doctors took us to a private room and told us they had successfully removed most of his left hemisphere. Those poor fellows. Asian men are known to be stoic and it was clear they felt awkward with my unrestrained mourning. But one of them had tears glistening his eyes too. My heart knit with his in that moment.

4 years ago today…over 14 hours after we’d kissed him goodbye…we finally saw him again. And he was breathing. Puffy from the fluids. Pale from the blood loss that two transfusions couldn’t hide. Wrapped like a mummy. But he was breathing. And in that moment…that was all that mattered.

4 years ago today…our son survived the Nightmare Miracle surgery that would not only save his life but would give it back to him!

4 years ago today…I had never heard my son’s voice make any intentional speech. This morning he called “Moooooommy” from his bed when he was ready to wake up. This morning he hugged my neck and said “love you”. This morning he told me “No call me Brick” because his new haircut makes him look an awful lot like the youngest child from the Middle. This morning he said “Wednesday. Tuesday yesterday…today Wednesday”. This morning he adamantly demanded chicken nuggets for breakfast. And drove me a little crazy with his cheek. Until he returned my “I love you” sign when he was leaving for school. Which melted me from the inside out.

Not every day these past four years has been easy or fun or miracle filled. But when I stop and remember 4 years ago today…how can I be anything other than joy saturated and thankful?

I confess that it was harder than I thought going back in time like that. Difficult…but also healing. It’s easy to get caught up in the sadness of the now and overlook the joy of how far you’ve come.

If someone had asked me to write the wildest script I could imagine for our family six and half years ago…it would not have come close to the path that has unfolded. Even though this journey with Trevy is very heavy and extraordinarily exhausting, we are SO thankful for where he is today. How far he’s come. For the people who have come beside us to advocate for him and support and believe along side us.

The Emotional Roller Coaster

Posted on November 3, 2013 by kenlininger

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…

Posted on October 1, 2013 by kenlininger

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, father, and friend today.

What has changed since the last post at 4 months?

Savanna 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.

She can roll over somersault style, a bit sideways, but she can do it.

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!

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.

She inspires me as a leader daily.

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.

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.

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!

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.

(A Shared Post) – What Parents of Special Needs Kids Want the World to Know

Posted on August 16, 2013 by kenlininger

Nearly 5 months after completion of a TPO resection, Savanna is doing well.

She is taking steps, she is engaging in the world around her. She is having periods of self-regulated behavior. It is wonderful, pure and simple. Here is a video of just how pure and simply wonderful it is at times.

Now I think to myself, “Wow! Maybe she could actually be well enough to ride the little bus (dare I say the big bus)!” There was a time, when that did not seem like a real possibility.

It is not all roses with Savanna though, as is true in most households with small children. She still struggles to regulate herself at times. I struggle to effectively help her. When this problem unexpectedly goes on for hours, it is overwhelming and exhausting. There are no pictures or video of these times.

It takes all the patience you can muster sometimes. Just when you think she deliberately picked up the widget and put it in a container, you realize…well, hmmm, we need to keep working on that.

And then there is Austin, our control sample. I stop and take a moment away from Savanna. And, I find Austin carefully populating the divided sections of his hi-chair tray with cereal – sorted by type and color – after I hastily dumped a few handfuls of several types of cereal in a pile, in the middle of the tray. He does this without any initiation from me or unwitting leadership from his brothers. He just does it naturally.

The healthy, natural, normal brain is a wonderful thing to see.

I work daily at carefully choosing the best steps to take down an unlit path with Savanna. I feel most days I make good choices, and others, well, let’s just say I step in ‘it’.

Sometimes I sit down try to write about what I would like to tell others about being a parent to a special needs child. But the words get tangled and the thoughts misconstrued. Here is a link to a post written about this subject by a mom in our church. Savanna is still quite young and her ultimate outcome is still largely unknown as are the challenges she may face in the near future. I relate to her post, on many levels. Perhaps Savanna’s young age coupled with the aggressive resection have altered her life dramatically. And, maybe I won’t have to experience some of the feelings she describes.

As a final thought… God allowed us to choose Houston as our new home. He did this knowing we would receive the right care for Savanna. And we have realized such care. He did this knowing we would meet wonderful neighbors. And we have met such neighbors. He allowed this knowing we would be surrounded by people who care and want to help. We feel blessed.

I encourage you all to read her post.

What Parents of Special Needs Kids Want the World to Know.