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.

She can roll over somersault style, a bit sideways, but she can do it.low res -7658

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.

She inspires me as a leader daily.low res -7584

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

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’.

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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.

-ken

Sunshine After the Rain

There is nothing like a 3400 mile road trip to bring out the best behavior in everyone – all stuck in the van for what amounted to north of 64 hours.  My apprehension taking Savanna on such a long road trip was high.  Her demeanor the past three months tempered my expectations.  In addition, results from the Bronchoscopy and EGD scope of her esophagus showed nothing was wrong.  Rebecca took her that day, and I was home with the other kids.  I remember getting the call, and actually feeling depressed.  I desperately wanted something found to be affecting her that could explain her lack of eating and near constant agitation.  Despite the fact she is not having seizures, we cannot live like this.  For the first time, I actually thought maybe we made a mistake with the brain surgery.  It was like a dark cloud was following her (and me) and the rain just wouldn’t let up.  I said a prayer that day for God to give me strength to carry on.

Yes, there was some less unhappy time, even some photo opportunities in the past 3 months.  But, I remember no discussion prior to surgery other than the common complications and rare unintended consequences, such as infection, hydrocephalus, and paralysis.  I did learn how to help her regulate her behavior, but it required a lot of heavy sensory input from me, and it was exhausting.  I just could not do it for more than 2 or 3 hours at a time.  At which point, I just had to put her down.  She could not just be held without a lot of stimulation.  Here is a short video of what she looked like during most of her time awake since the surgery (just before the trip)

Travelling in the car proved easy really, as Savanna really enjoyed the constant motion and movement which is known as vestibular sensory input.  Knowing how to regulate her behavior externally through my actions, I actually expected an easy car ride.  But she wasn’t just easy to manage, she was really happy at times.  It was refreshing to witness.  At the hotel, the alternate personality emerged, (and so did the Ativan®).  An hour or two was all we could endure at that point, and we had to intervene.

First stop on the trip was my Dad’s place in VA.  They live in a modern log cabin on Lake Anna, a man-made nuclear power plant cooling reservoir.  Lake Anna is nearly 17 miles long, populated by people who love being near the lake.  The obvious enjoyment of lake living overflows from their property onto elaborate docks complete with second story living areas, slides into the water, dry docks for several different types of watercraft, duck blinds, and even an airplane hangar or two.  It seems more developed each time we visit.  Rebecca had to work in DC, so I took all four kids out on the pontoon boat with Grandpa and Grandma 2 days in a row.  We pulled them around on the tube until they just didn’t want to tube anymore.  I even took Savanna out on the tube with me, and she really enjoyed it.   Before, after, and sometimes during, was challenging with Savanna as usual.

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Then on the third day there, a miracle happened.  Her morning was typical.  Inconsolable for about 5 hours, then nap time, and then she awoke and didn’t cry!  Like the sunshine after the rain, Savanna was happy. It was like a new beginning that day.  I didn’t know what to think or even how to appreciate it?  It was a relief at first.  She wasn’t screaming and crying constantly and I assumed that she would start crying again soon.

She became a Mommy’s girl instantly.  She wanted little to do with me, especially when Rebecca was within sight or earshot.  How selfish was I to be a little depressed by this particular behavior, being the only one who could seem to regulate her for any length of time in the past few months.  The coming days saw another leg of the trip (550 miles to Louisville, KY) where the other grandparents and family live.  She could not have been happier once at Rebecca’s parents’ house.  She smiled.  She laughed.  She was very deliberate with her actions and movements.  Her cry changed to one of ‘look at me!’ rather than the boo hoo of ‘why is this happening to me?’  The shallowness of my thoughts during those first days would soon be overshadowed by the change we saw.

I really think God was watching us and was acting.  I tried to explain to those around her our first night in Louisville that this had just happened.  My words felt like they became awkward, as none of them have really seen her in the last 3 months.  I should have just kept quite.  Looking back, what did the past really matter anyway?

The joy of peace and happiness filled the air.  All seemed right in the world.  I learned on this trip not to disturb such joy with unnecessary conversation.  I am still learning how to choose the right words to formulate responses to questions from many different types of people.  I am still learning how to exude happiness, elation, and even satisfaction about how great she is doing compared to where she was less than 1 year ago.

I have immersed myself in her every detail of her condition and care, delving deep into how persons like Savanna ‘recover’.  I have results from Early Intervention testing, advanced genetic testing, detailed clinic notes from many types of doctors, and feedback from therapists who spend most of their time with kids like Savanna.  I spend time helping others work through similar situations, providing support, just trying to listen.  All of this activity brings gravity to Savanna’s situation.  Yes she looks great.  Yes, only Savanna knows what she is going to do in this world.  Yes to all the anecdotal advice we are given.  But my vantage point gives my a different perspective.

A broken bone healing is how I think many see Savanna’s situation.  During this trip, the cast came off, function resumed, and now she is ‘normal’.  Just put her back with the other kids, right?  What is your problem Dad?  What, she won’t eat?  Well, you need to learn how to feed her – don’t you know?  Okay, maybe.  Maybe everyone is right and I am over thinking some things [but I don’t think so].

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Most professionals would agree that the broken bone example is over simplification, despite how she is acting at the moment.  On this journey with Savanna, I am learning how to converse with people about her situation at various levels.  Numerous times on this trip I found myself misguided in conversational direction.  I was too argumentative with my know-it-all attitude, and too late to change course aside from shutting down the conversation.  Live and learn.

Character flaw aside, I really enjoyed also watching Tristan, Brandon, and Austin spend time with their cousins and especially Savanna’s happiness with her Mommy.  I felt blessed by the end of the trip.  We let Tristan have a camera during the trip and just let him go to see what he would capture.  Attached are some of the photographs he captured.  Each day I see a little man emerging in Tristan.  I wish I could just freeze him just how he is so I could have more fun with him at this age, but life goes on.

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Our trip back to Houston was without incident, and Savanna has remained for the most part happy.  She seems much more engaged with her surroundings when she isn’t just wondering around on the floor crying.  She is exploring, learning, and having fun.

We accepted the arrival of our Au Pair, Ruth, from Australia.  Ruth is a great addition to our family and the kids have warmed up to her quickly.

I am learning each day how to better appreciate a little sunshine after the rain.

-ken

Recovery… in the Shadows

74 days since complete TPO resection.

In the shadows, we see great things from Savanna.  She responds like never before to the world around her.  Strength, she is gaining every day.  Finding the blessings in each day are easier as she smiles now when she sees me and then deliberately crawls towards me and wants me to pick her up.  Amidst the unending housekeeping, I see a toddler in the shadows exploring furniture and a house she has never seen on her own.  Instead of seeing only the neighbor’s little girls play, I see mine play.  I see things that scare me when she climbs something on her own the first time.  Through teary eyes, I see the innocent love from her brothers who don’t really know what is going on yet.  I see a toddler nearly 21 months old, functioning emotionally at a typical 6-9 month level.  I see a toddler we are just getting to know.   From what I have read, she is just getting to know us as well.  I see all of this in the shadows of very short moments throughout the day.

Brandon will at anytime, even if she is crying, jump in the swing and start to do his thing to make her laugh. I have to restrain myself at times, as it almost always works out great. She laughed here from her belly, it was a moment to to shut off the faucet, put the dish rag down, and just watch and absorb.
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The clarity and symmetry in her eyes now is stunning. It was never like that if you look back through her pictures.

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She now surprises me with what she can do.
She now surprises me with what she can do sometimes.
Austin with Savanna on the swing. She is happy here, but definitely in her own world.

Out in the open, she is in pain.  It is inexplicable and no drug helps.  Most feedings devolve into an act of futility within minutes.   She is in pain.  She veins out like a devoted weightlifter.  She exhibits stridor when upset and is still retracting a little in her tracheal area of her throat even when not upset.  She has failed a swallow study, but we were told “it was mostly normal”.  A recent clinic visit with a Dr. GI planted a new seed in my mind for differential diagnosis:  Candida in her throat below the esophagus.  What you say?  A yeast infection in her throat, really?  Why yes.  And I understand it can persist over long periods of time.  If I play Dr. House on TV and populate my white board with symptoms and probable causes, Candida wins over re-flux handily (especially since we are already treating for re-flux in an effort to affect the situation – Dr. GI didn’t care about that).  This day, like so many others, Savanna seemed ‘okay’ in the clinic at that moment.  Why is that?  It is because that is the way it goes.  I know you were expecting a scientific or smart-a$$ statement, but no, ‘that is the way it goes’ is my answer and I am sticking to it.  As soon as we left, all hell broke loose.  In fairness, treatment of the patient depends a lot on presentation at that moment in time – in most cases.

Oh great, let’s treat the Candida, right?  Wait, treating it without formal diagnosis would be ‘sloppy’ according to Dr. GI.  We have to scope her in the OR under GA to confirm.  But, even though we don’t know if it is re-flux or not, we will treat that right away.  What?  What kind of fuzzy ethical line is this I ask myself?  I my heart, I know if this were Dr. GI’s kiddo suffering, the treatment plan would be different, or at least on a different timeline.  Sometimes, it is what it is.  I have accepted that for Savanna, suffering is just part of her life.  As her caregiver, I work hard to learn how to help her, but sometimes you have to accept that there is some suffering still to be had by all.  In His plan, I think this suffering helps reduce the mediocrity toward life when there are good times.  Without doubt, it has changed the way I see the world in terms of special needs people.  For starters, I see them now, which is in and of itself a big step for many people like me with virtually no background whatsoever.

“Oh don’t worry…” says Dr. GI, “If the situation gets worse, call us.”  And, you will do what, exactly?  Gosh, can it get worse?  For a split second, I forgot.  Yes, it most definitely can get worse.  I count my blessings along with each day she seems to be seizure free.  So for now we wait.  We wait for the day she goes under the cloud of anesthesia and away from us – again.  To a place where helping her as her parent, we have to let her go.  From there, we are actually helpless.  It is a dark feeling.  It feels like you are at the bottom of something where no one understands, where you are unimportant despite great lengths that have been taken to educate yourself, despite the emotion surrounding the sacrificial, endless love and care that is required each day to survive.  I will wait for something miraculous to take place yet again on that day.  I will wait for that moment in the waiting room, where I hope to get good news.  And like past experiences, hope a problem is identified that can be repaired with restorative measures.  I just wait.

Tristan ‘graduated’ pre-school after only 4 weeks of enrollment.  I did this so I could have a little break while Rebecca was travelling.  The lady in the very middle in the white runs the school and could not have been nicer to me.  Then I learned she had a daughter with special needs who has since gone to heaven.  I am not sure how much harder it can be on this earth to watch your child slowly succumb to a rare, horrible syndrome.  Even with what we have been through, I can’t imagine what she had to handle as a parent.

Tristan - 'Graduation' from Crossbridge pre-school, where only a

On a lighter note, Tristan, Brandon, and now Jackson have continued the pirate gold hunting activity started when Grandpa Squiz was here last (thanks….)  Our neighborhood is still being developed which includes a lot of lake digging.  So, we head when the weather is good and the equipment is resting to ‘look for pirate gold’ that might have been uncovered while they were digging.  These are fun times indeed.

In the excavator bucket!

In the excavator bucket!

How many people can say they have been on a D6 dozer...

How many people can say they have been on a D6 dozer…

With friends, exploring the new sections of lake being dug in our neighborhood.

With friends, exploring the new sections of lake being dug in our neighborhood.

What color is my tongue?
It’s summertime!

Having Rebecca working from home has been well, interesting. great!  She traveled away from home the first 6 of 8 weeks (6 consecutive weeks) which was very difficult.  The last day of the last week of this travel marathon, the kids were bound and determined to say up to meet mommy, not scheduled to come home until around 1am.  The last one asleep was Tristan who made it until 11pm.  This was a moment I took to low light photography and got a cute picture with a 30 second exposure.  It came out great with wonderful color and detail.  Austin is passed out face down on the floor, and Tristan and Brandon who are best buds, were inseparable as usual.  Savanna, where else, in the sensory swing.

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We have wonderful neighbors who help me with the kids.  They are willing to let me nearly kill myself on their boats trying to learn how to wake-board.  (I am forecasting the need for services from adult doctors at Memorial Hermann one day if I keep trying.)  They too have little ones and we are having fun teaching them all how to ski.  Tristan and Brandon have skied now several times and are loving it.

Tristan skiing on a small arm of our lake very close to our house.

Tristan skiing on a small arm of our lake very close to our house.

We have entered a contract with another Au Pair agency to accept an Au Pair, so full-time help is on the way!  Her arrival will be early July and we can’t wait.  There are projects around the house that need attention, things to paint, things to fix, things to change, just things to do.  None of which I can do while spearheading Savanna’s care and keeping the other three kids alive entertained, well fed, and clothed.  Somewhere in the middle of all the therapy, appointments, and ‘entertainment’, there is endless daily cleaning and housework that in spite of the effort, still leaves the house in a somewhat embarrassing state at pretty much all times while I am on duty.  I am sure Rebecca can expound greatly on this issue.

I feel like I am on an island, far away from land, but close enough to see it.  I am walking a fine line, tip-toeing on eggshells, carefully navigating freshly frozen ice on a pond.  I am deliberately trying to starve her just enough to stimulate the desire to eat, but also making sure she is healthy for recovery from major surgery.  Some people might read this and have differing opinions on what we should be doing to help her.  Help her we are though, as she continues to improve.  In retrospect, had Savanna not already have a G-tube placed, this situation might have been resolved a long time ago.  Dehydration would surely have set in within a week or so of being discharged, and she would have been back in the ER.  We might not have been discharged at all looking back.  What can I say?  It is a recovery in the shadows.

-dad

Milestones: Savanna progresses while Daddy falls over the hill…

32 long days since Savanna’s elective multilobar resection.  What can I report?  Well, it has been really difficult, but I think she may have finally turned a corner with all the crying and pain.  And, it probably had more to do with two of four incisor teeth finally breaking through the gum line.  One thing I have learned is that life’s normal challenges for young children are just that much harder for Savanna. Unfortunately, she doesn’t know any other way.  Just before the grandparents left, we were able to get a few good pictures where she wasn’t sleeping and wasn’t crying.

Grandma Lou and Savanna

Grandma Lou and Savanna

Mama Barbara and Savanna

Mama Barbara and Savanna

I have come to realize that these periods are core training for parenting special needs kids.  It is a bit like that darn underwater board in Super Mario Bro’s Wii, (…need some special thumb exercises or something).  It is really difficult, but necessary to master (or at least pass) in order to progress through the game.  With faith in God, living through these periods and not losing your sanity is actually possible.  And, in turn, it helps me see the happy times more clearly and not to be so callus in social situations.  Otherwise, I would probably go bonkers with typical conversation with people around me at any given time.  We did document the good times when they happened and here are some pictures of the kids doing fun kid things.  Tristan and Brandon are two pees in a pod and they do everything together.

Tristan and Brandon being silly at lunch.

Tristan and Brandon being silly at lunch.

Tristan in 'Time Out', Austin thought it was cool and wanted to join in.

Tristan in ‘Time Out’.  Then Austin thought it was cool and wanted to join in.  I couldn’t help but laugh, and that didn’t help the ‘time out’ situation, as Tristan knew what was going on – head down and laughing at me laughing at the them…. lol.

Play time after a bath with twin brother.  Austin and Savanna.
Play time after a bath with twin brother. Austin and Savanna.
Back yard fun with a planter box on a Saturday

Back yard fun with a planter box on a Saturday

Savanna in a moment of happiness, with Mommy.

Savanna in a moment of happiness, with Mommy.

Pre-school and then playing at the splash pad all afternoon is tiring.  This is 6:15 at night, and Brandon falls asleep at the table.

Pre-school and then playing at the splash pad all afternoon is tiring. This is 6:15 at night, and Brandon falls asleep at the table.

Warning: yucky image forthcoming.  One morning Savanna was having a particularly difficult time.  She cried and fussed for about 5 hours straight starting at about 5 am.  At 10 am, I decided to just buckler her into a car seat on the sensory platform swing I built and let her swing.  She was worn out from all the fighting.  She got quiet.  I left her to deal with some laundry.  I was at the putting away stage with about 4 loads, so I grabbed what I could and walked back to put it away.  The smell hit me like a wall.  It was obvious what had happened and who did it.  She wasn’t just quiet but laughing.  I already knew I had a big mess to clean up, but I was still amazed at what I saw when I turned the swing around to see her.  Savanna was happy and laughing and I realized this was worthy of a photo.  It pretty much speaks for itself.

Savanna happy about poop in swing

Savanna happy about poop in swing

As Savanna navigates this unpredictable sea of difficulty, Daddy turned 40 this month.  Yes, I feel older.  No, I can longer just decide to do the P90-X Plyometrics workout at will and expect to make it through even half of the  routine.  No longer can I just decide to go run a few miles, with or without the kids in the stroller.  Yes, I have a lot more grey hair – but no need for ‘Just for Men’ yet.  Yes, I have another hernia in need of surgical repair.  But, there is good news:  I don’t need the little blue pills yet!  The kids and mommy felt it necessary to make a cake and actually put 40 candles on it.  Nice.

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During all of this discomfort, Savanna has made strides in development.  This has a somewhat calming effect for me, as I know this would not be happening if seizure activity was occurring in the manner it was prior to surgery.  Right now, we have to stay focused on that fact.  We have obtained the compression vest to help her with the awareness of herself as she moves around.  It is like a custom wet suit that is adjustable in terms of tightness of fit.  Savanna now has custom AFO’s (ankle-foot orthotic) that helps prevent hyper-extension of her knees when she stands.  She is much more responsive when she sees you in the room and when you call her name.  This is really a feel-good reaction from Savanna that both mommy and daddy needed to see finally after this surgery.  It could not feel better when while not looking at you, you call her name, she turns to locate you, makes eye contact, smiles, and proceeds to crawls toward you and going to tall kneeling with her arms out and up to hold you.  For some reason, I never thought that was actually going to happen with her.    Then comes the inconsolable crying and fussing.  Her movements and behavior when you hold her sometimes is like trying to hold a 25 lb mealworm.  She is just everywhere, every which way, and really low tone at times.

Savanna decked out with a compression vest, AFO's, and a medical walker.

Savanna decked out with a compression vest, AFO’s, and a medical walker.

She is crawling all over the house now.  This is amazing to see, and is causing me to have to put things up off the floor in area’s she never bothered to explore or care about.  She has climbed 2 steps unassisted (…and then… fell backward as I knew she would, so I caught her before she landed on her head.  “Good daddy, good!” as Brandon says.)

She is standing now on her own with the help of furniture – meaning she can transition from sitting to standing on her own.   This is a milestone for sure.  I have attached a video showing her standing on her own.  For me it was breathtaking while also very rewarding.  This particular clip was about 5 am, and I heard her active in her room.  Austin (her twin) was still asleep, so I flipped the light on to capture this sequence.  Because of her visual field cut, I don’t think she saw me until I said something.

Going from laying down to sitting up, to standing up, all have their mechanics of motion.  And those mechanics are broken down in movements or elements.  The training includes correctly positioning the correct limb, at the correct time, with proper weight transfer, etc., etc.  Learning to dance is similar when you really break down the movements.  We have to teach Savanna each element and how to put together the movements to accomplish the overall goal, sitting up, standing up, walking, etc.  It is amazing how normal kids just do it naturally and without any trained guidance.  It is a good outward expression of how Savanna’s brain is different from a normal brain. Learning other skills require a similar approach.

Speaking of normal kids, we have been able to witness some normal twin activity that was never really seen in our house in the past.  It has been great to witness even if it only lasts a minute or two.  Austin sometimes mimics Savanna’s bunny hop crawl, and she gets the biggest charge out of that.  Wish I had some video of one of those moments to share, but it starts and stops very abruptly and I just haven’t been quick enough on the draw to record it yet.  Here are a couple of pictures of a rare during the day bath time for just the twins while the big boys were at school.

Austin, close up...

Austin, close up…

In the tub fun, without the big kids.  A rare moment worthy of a photograph for memory.

In the tub fun, without the big kids. A rare moment worthy of a photograph for memory.

She really likes tilting her head toward the resected side, and actually putting it on toys and such.  She continues to do this a lot and we are not sure how to interpret this activity, especially when she is usually so happy when she does it.  She also is increasingly insistent on banging her head against walls, mirrors, floors, table legs, etc.  She does it repetitively, so she will crawl over to a door with a low glass panel, move to tall kneeling, and just start bumping her head against the window.  It progresses to the point I feel the need to intervene.  I think this may be sensory related, but are not sure.  A protective helmet is on order as she is getting really aggressive with this activity.

Since her second surgery, Savanna gets pleasure from putting her head/ear on whatever is around her.

Since her second surgery, Savanna gets pleasure from putting her head/ear on whatever is around her.

Unfortunately, Savanna is still battling something in her throat – or at least I think she is anyway.  She makes funny sounds when she is sleeping, kind of whistle-like.  When she gets really worked up, she has significant retraction in her throat.  Her swallow sound is really labored and noisy.  It is almost like when you have a really sore throat, and all seems well, then you swallow – ouch.  A swallow function study recently indicated Savanna is in fact aspirating thin liquids, what a surprise.  I had already ordered the infusion pump as a last resort option, and had been bolus feeding her through the G-Tube since surgery because my daddy instinct indicated she was having problems.  Plus she refused to suck after the second surgery and that to date has not changed.  So bottle feeding is over and done with for her.  She has a follow-up scheduled with her ENT soon that will shed light on the situation I hope.

She is otherwise very healthy and just generally really unhappy about half of her awake time.  It is somewhat concerning for us as parents, and we are really hoping her situation is just circumstantial regarding her teeth.  We have already asked for guidance once from her doctors.  Thus far, I think this just may be the way it is for some time yet.  I noticed during the swallow function study that her 2 year molars are right there too.  (This is a study done with x-ray ‘always on’, so there is plenty of time to see a lot of things in her head.)  I don’t see bulges on her gum in those areas, but the teeth are right there.  So, this could be a long six months or so.  God watch over her.

-dad

Our baby is home….

Savanna was discharged early Friday morning and we made it home by lunch time.  It was so nice to be home, feeling like we were back in the driver’s seat again with her care.  Savanna is doing better, but still has a long way to go in terms of recovery.  She is in a lot of pain, and the best we have to manage the situation is ibuprofen and Tylenol.

Savanna Hospital Second Resection-6014

The past few days have been rough trying to manage her pain.  It comes and goes.  We seem to get good moments all of a sudden, and then as quickly as it became good, it deteriorates into crying and fussiness.  She has absolutely no interest in taking a bottle, so we are back to bolus feeds only (through her feeding tube).  This is tricky when she is just agitated beyond consolation, and squirming like you would not believe.

I decided to make some adjustments to her medication to see if we could level out her mood without too much sedation.  I split her onfi back to TID (tri-daily) versus morning/bedtime only.  And I went ahead and started scheduling .5mg of ativan, TID.  This has helped tremendously.  She is much happier and playful, with a lot less ibuprofen.  Once we get completely off the dexamethasone (steroid for her stridor), that will help this situation too.

Savanna Hospital Second Resection-6094

She used to crawl by doing a bunny hop, versus alternating opposite leg/arm movements and now she is crawling like a normal baby.  Albeit not much, but when you see it, it takes your breath away at first.

She is eating, like a horse.  She is chewing well.  Against normal intuition as a parent, dicing food into incredibly small pieces enables babies to simply swallow food versus chewing.  One piece just the wrong way and she chokes or her gag reflex kicks in full force.   So, the O/T (occupational therapist) we have recommended giving her larger pieces, so she would not naturally want to swallow the food, but rather naturally realize she has to chew it first.   Even if she doesn’t swallow it at first, that’s okay, she is getting over the aversion to having food in her mouth.  This has been a long process with Savanna.  A process that honestly, we almost didn’t even notice with our other kids – that is how different they are from a developmental standpoint.  It is all good.

One step at a time.

Savanna Hospital Second Resection-4

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These guys are three pees in a pod.  They are the best of brothers, and worst of enemies when it is time for ‘warfare’ – aka ‘playing wrestle’.

Tristan, Brandon and Austin are such good helpers.  They love to do things for Savanna to help us.  Most of the time, it is a good help.  Sometimes, like when Brandon wants to spin Savanna on the sensory swing, things get a little out of control.  I picture in my mind puke spraying out from Savanna splattering the walls all around her as she spins wildly…. and then… well, I slow down the swing of course.  We have yet to see the puke, but I have to admit, she likes to spin.

They just crack me up with their antics and how Tristan (the oldest) can interact so well with Austin, (Savanna’s twin and the youngest).  He is so protective and makes sure Brandon does not hit him too hard, or ‘wrestle’ him too hard.  They drive me to my wits end, especially when Savanna is having a really difficult time.  Then they turn right around and do things that are so touching and so thoughtful.

Sometimes, I have caught myself making parenting mistakes with Tristan (oops! did I say that out loud?)  Yes.  When my patience is the thinnest, I act my least thoughtful.  I am so focused on something going on with Savanna, that I have said things in a voice that was not called for, but was heard.  These situations are difficult.

Like seeing a picture you shouldn’t see…you can’t ‘unsee’ it.  Once I hurt his feelings, it can take a long time for him to get over it no matter what I do or say.

In the beginning, he (Tristan) would ‘forgive’ (more like forget) pretty quickly, but not now.  He is older and smarter.  His feelings are genuinely hurt, and most times it goes into the next day.

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I am learning as a parent and person in this situation.  It is still a work in progress, but this ‘stay-at-home’ situation is far more difficult than I thought it would be when I signed up for it.  With that, of course, goes the reward far beyond what I could ever achieve in any company, at any level.

Seeing Savanna learn and progress, knowing that I am big part of that effort, just can’t be explained in words.  There are not words that I can put together to characterize the emotions involved, especially since this last surgery.

So, overall, Savanna is progressing and doing well.  We are really anxious for the next few months to see what happens.  We continue to learn as a family what it takes to care for someone like Savanna.  More challenges are forthcoming.  Just as I have said before, God is preparing us for the future with the situations of today.

A special thanks goes out to Grandpa Squiz, Grandma Lou, Mama Barbara, and McKenzie and Eric for being there when we really needed help.  They allowed us to devote 100% of our time to Savanna during the operation and recovery period in the hospital.  Their help was a blessing.

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Recovery from a Second Resection for Focal Cortical Dysplasia: Day One

Having taken care of Savanna after her first epilepsy surgery, I thought I knew what to expect.  I was misled by my own experience about the potential difficulty immediately post-op.  My bewilderment is like that of parent who’s first baby sleeps through the night in 3 weeks while child number 2 doesn’t even come close to such behavior.

photo (1) photo (2)

Savanna was very healthy during the procedure, but it still took nearly 12 hours to complete.  The craniotomy (opening in her head) was basically the same as her previous except one small relief cut around the vertex of the incision at the top of her head to allow more access.  The neurosurgeon told us that Savanna had significant scaring in the dura underneath the cranial bone which resulted in a longer procedure time than planned.  After surgery Savanna was extubated and began to experience difficulty breathing known as stridor (a wheezy, whistle sound when breathing due to constriction).  This resulted from her larynx and retinoids below it being very inflamed, which constricted airflow.  Imagine trying to run or workout while breathing through a straw only.

 

Throughout the night she was really agitated as the anesthesia wore off and the stridor kept her from breathing well.  Finally, after many doses of sedative and painkilling medicines, she really went downhill – so I thought.  I worried about her safety that night one time in particular.  Rebecca was right there and even though an RT was working on Savanna, things spiraled out of control – or so we felt.  Rebecca ran down the hall to find the critical care Fellow that was managing her case, and forcibly brought them back to the room.  I think there were some expletives used, as she too was really scared.

Savanna was in tachnycardia.  This can be really scary, but also normal presentation with a very agitated child.  For sure, with the stridor, the crying hurt as her throat was sore, and this increased her agitation, which results in more crying.  Add the constriction to the windpipe and you have a recipe requiring action.  With respiration rates in teens, heart rates in the 220-230 range, and bp north of 130, she was really unhappy.  They would administer a mg of morphine and she would settle down for about 10 minutes and then awake as though someone was cutting her leg off with a butter knife.  Then they tried something else, same result.  Everyone involved was amazed after several doses of versed, morphine, norco, the addition of precedex drip, there was still only minimal control of the situation.  Rebecca and I could not have been more relieved that we had clear contact with the doctors overseeing her neurological care.  They called the appropriate people in the PICU and we felt (even if it wasn’t the case) this made a difference in her care that night.

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Perspective:  Most likely, the Attending Physician, Fellows, Residents, Interns, and Nurses had not seen more than a few cases like Savanna’s in their lifetime.  And guaranteed, the only thing similar would have been the type of seizure disorder.  The etiology and child would likely be very different.  Some statistics for those interested in my rant on ‘perspective’ – (based on aged data, but the best I could find)

  • 4,000,000 live births in US according to census bureau.
  • 1:4000-6000 live birth rate for babies diagnosed with Infantile Spasms.
  • Result: 1000-2000 total babies are born that will be diagnosed with Infantile Spasms, total in the US.
  • The gender ratio is 60:40, boy:girl  ==  There is only 400 to 800 female babies per year born in the US like Savanna.
  • There are ~ 22 babies within 1000 square miles of Houston that are born like Savanna each year:
  • Ratio of 10-county (1000’s sq miles) population versus national population
    • 6,100,000 : 350,000,000 = 1.7% x total births = ~68,000 people born in this area
    • Factor in 1:5000 average, ~ 13 girls born that will develop IS.
    • Factor in 70% symptomatic diagnosis, 9 girls born who will develop like Savanna in Houston area (1000 sq miles) each year.
    • There are 2 locations qualified to treat this condition in the Houston area.

Even if you add to the number of children with FCD (focal cortical dysplasia) that did not develop IS (infantile spasms), it is a small number in any given year.  So from my perspective, Savanna is very special, even if some of the doctors who care for her don’t see her situation worthy of study when dropped into their lap.  I am not suggesting they ‘waste’ a lot of time understanding the her history, but more than a look at her current chart might give some perspective to her situation and our potential knowledge as parents.  But nonetheless, I find myself ‘just the dad’, with a perceived  ignorant and irrelevant opinion not worthy of anything except keeping to myself.  A situation that would seem to warrant 60 seconds of briefing by looking through her most recent neurology clinic output note devolves into one that they are forced to go back and look or face a difficult road.  I know other parents out there have felt the same way at times.  I can’t understand why the situation has to be so difficult.

The following day, we were assigned a nurse who deemed herself all-knowing as to what Savanna wanted, although she stated the opposite.  Her hypocritical actions combined with her statements didn’t sit well with me and we decided not to stand for it.  Rebecca took on the confrontational role and initiated a nursing change.  This particular day was stressful enough already and we did not need the attitude from the nurses treating us like we have never taken care of kids before or that it was our fault the night shift crew did not do the job just as she would have done it.

So here I am, shortly after the first 24 hours in the PCIU, realizing that my baby is probably going back to the OR in a couple of days to deal with the airway restriction that is hampering her recovery while facing the fact that I am confined to this location against my will.   To top off our sour experience, Dr. V arrives around 5pm to check on Savanna.  We had never even seen the attending physician that day even though they, ’rounded’ on Savanna.  No doctor or nurse even told us what ‘the plan’ was despite several attempts to find out ourselves.  Dr V, says she is going to contact the ENT she wants involved, then leaves the room to make the call.  Magically, the attending physician comes in to speak with us, and said he had already set up the consult.  Ironic.  Not sure exactly happened outside the room during those few minutes, but it just seems odd that all that happened within about 10 minutes.

Savanna Hospital Second Resection-3

Savanna Hospital Second Resection-2 Savanna Hospital Second Resection

But, here we are, Second Resection in Recovery – Day 1

-dad

December 19, 2011: A Day to Remember Forever for the Liningers

What a year for our family.

December, 19th, 2011 :  The day we got the official news about Savanna.  It was a day filled with anxiety and nervousness.  Savanna had been through a lot in the last few days and we as parents had learned a great deal about her probable condition.  We were just waiting in the hospital on a Sunday afternoon, as we were told the doctor(s) were finally going to talk to us.  Then it happened.  Almost out of the blue, a team of doctors came in mid-afternoon.  Leading the way, and the only one who spoke was Dr. Mary Zupanc.  She said to us, “You have to mourn the loss of your normal child.  She is gone.  You need to start to prepare yourselves for what may be a very long and difficult journey.”  She went further to warn us that “90% of all marriages with a special needs child like Savanna, end in divorce.”  We didn’t know anything about anything at that point, and we later learned she was new to the CHOC family.  Her employment was the beginning of a new direction intended to make CHOC a leader in the pediatric neurology field.  The only cases she handled were refractory or intractable (severe & rare) in nature.  I don’t think we fully realized what that meant at the time.  It wasn’t until much later after the ACTH therapy, after the necrotizing pneumonia, after multiple LTM EEG’s, the installation of a permanent G-Tube, that the denial had worn off and we began to grasp the magnitude of our situation with Savanna.

Looking back, we could not have been more blessed than to be admitted when Dr Zupanc was overseeing the EEG monitoring at CHOC.  The Dr. reading the LTM patients EEG results alternate and Dr Z has the 1st and 4th week of every month.  Had she not been there, we might be in a very different situation.  She taught us just how catastrophic the seizure activity was for a baby of Savanna’s age.  More importantly, awareness of how critical it is to arrest seizures in children under 2 by any and all heroic action available.  Not acting aggressively can mean the difference between very different outcomes in development.  If you have read any of my recent posts, you know that this is not a widely accepted principle in neurology.  God was watching Savanna, and while the situation was bad, we could not have been in a better facility in terms of care for her specific needs.

The EEG report from the VTM ending on December 18th read, “possible lesion on left temporal lobe”.  Here we are about 11 months later recovering from epilepsy surgery where a cortical dysplasia lesion was removed from the temporal-parietal-occipital region of her left hemisphere.  For me personally, it is a day of reflection about what we have been through and how far she has come in such a short time.  I have taken the time in the middle of the night to go back through some of the pictures and the emotions of that day 12 months ago and many memories are still very vivid in my heart.  Some memories have faded.  Some memories I wish I could change by having behaved differently at that time.  However, trying to grasp the realities of the situation was difficult, almost impossible until we had a chance to live through it.  It reminds me a lot of the birth of our first child.  Many of you can relate to this.  You prepare, read the books, etc.  But some things you just can’t learn until the baby is delivered and you have a chance to experience it first-hand.  For many, it changes life dramatically.   Savanna has changed our lives by educating  us about how typical life is such a miracle.  A few statistics surrounding her journey from December 19 2011 thru December 19, 2012.

·         57 typical RX scripts filled, total insurance billing, around $25,000

·         14 Specialty Drug RX scripts totaling $164,000

·         Total processed health claims for Savanna, $798,000

·         Total processed health claims for the rest of family was an additional $85,000

·         90+ days in the hospital with Savanna, 14 days with Tristan

·         60+ hours on the phone during the second half of the year with the insurance company and service providers when Anthem’s system began filing Savanna’s claims under Austin when we went onto Cobra.  This resulted in many denied claims, and a waves of collections against us as the bills began accumulating quickly.

·         Gratitude that we have been financially fortunate and were both able to work and save for a “rainy day” prior to this experience.

·         Empathy for the 1000’s of families facing similar situations who cannot possibly be as fortunate as we are.

Savanna is not free of epilepsy, but seems to be free from the very disruptive seizures the were halting her development and assuring entrance into the contingent of Lennox-Gastaut sufferers.    Dr. Nitin Tandon performed the surgery and his office billed our insurance company $9999.00 for his services – of which his office collected a payment of $3292 from our insurance company.  It is an unbelievably small amount of money for such a far-reaching, life-altering procedure.   Compared to other types of surgeries, the cost versus benefit is off the chart and that is really an unfortunate reality.  That translates long term to surgical talent that is less likely to choose a path of epilepsy surgery expertise when they can make 5 or 10x as much money performing elective spinal fusions for example.  The vast majority of patients like Savanna are misdiagnosed and do not have the opportunity for such a procedure so early in life.

The changes in our lives as a result of Savanna’s birth have been significant.  We relocated our family.  I resigned from the workforce temporarily to manage and guide her care.  Rebecca took a new position in GE, and is dealing with a frustrating work environment that won’t allow success.  We contracted as a family earlier in the year, as we began to face fiscal challenges once foreign to us.  We are contracting again at the end of 2012 in light of the increased tax burden undoubtedly being put on our shoulders.  This situation has altered our financial planning which we once thought was sound.  Action has been  required to stay solvent, and these lessons will be passed on to our children.  Direct medical expenses related to Savanna’s care were a fraction of the total listed above, but the soft costs not directly attributed to Savanna’s condition were and are enormous and never seem to stop.  I have arrived at an understanding of why families earning far less would simply give up and let their neighbors pay for it through a vehicle called Medicaid.  We will never in our lifetime pay in Medicare taxes equivalent to what Savanna’s care cost during her first year of life.  To simply entitle ourselves to this presumed benefit is morally and ethically wrong in our opinion.  Regardless of the schooling, we will without fail teach our children that there are better ways to help those in need than government programs.

Watching our daughter suffer, tested our resolve.  It was so difficult, that I honestly believe death would have been easier to deal with during her most difficult periods.  Experiencing her seizures was like anticipation of imminent death for me.  There was a bit of numbness that developed as at some level you can only handle so much before your body just simply starts to shut down emotionally.  Writing this blog in many ways is one of my few outlets as I work through my personal emotions with words.

December has been a little tough as we had a confirmed case of RSV in the house in early December, and guess who it was, of course, Savanna.  While we were worried about complications, she managed to pull through it well.  Austin and Brandon probably had it too, as they were really sick for about 10 days.  Tristan managed to head it off, but did have a few sickly days.  Rebecca and I both got it too, eventually, but it turned out to be pretty light in terms of effect on us.  Savanna had a swallow function study on the 11th, which is where they determine how well she transfers thick and thin fluid from her mouth to her esophagus.  She did great with no signs of aspiration.  We started to push the post-oral feeds and she is doing well.  Then she developed a UTI, and that was really unpleasant for all of us.  Through this, I undoubtedly witnessed seizures with Savanna.  At some level, it was to be expected.  I increased some of her medication, which slowed the downward titration, but managed to keep the seizures at bay.  As of the 19th, everyone is healthy.

Moving forward, Savanna is doing good with her physical therapy and we will be adding speech and occupational therapy in the coming weeks.  We will undergo another LTM/VEEG January 16th so see if she is experiencing any abnormal brain activity or seizures in a 24 hour period.  Once off the Keto diet, which will be early January, she will have an overnight sleep study to make sure she is maintaining oxygen saturation levels.  We will switch from Sabril to a conventional AED (anti-epileptic drug), which she will be on for at least 1 year post operative as a standard protocol.

So here we are, on the cusp of another trip, contemplating the feasibility of traveling with Savanna.  We have enough drugs to manage almost any seizure related situation.  I have called ahead and know where the diagnostic equipment and expertise resides in Louisville.  All indications are that we are headed back to Louisville for Christmas for a few days.

Our heartfelt thanks go out to all of you who express interest enough to read this and follow her journey.  Your thoughts and prayers have not gone unheard, and God is speaking through Savanna.  From our family to yours, we would like to wish you a Merry Christmas.

Best wishes

-dad

(Ken Lininger)

Rebecca’s comments and commentary –

As we look back on the words Dr Zupanc chose, and the candid and the direct manner in which she delivered them, we now realize how fortunate we were to have her deliver these messages to us as directly as she did.  We’ve recounted this story a number of times, and those who love us most have had the immediate reaction to have wanted to protect us from the perceived lack of bedside manner.  It was the hardest thing we’ve ever had to hear.  But, truth was necessary.  It was necessary to prepare us for what lay ahead.  It was necessary and the kindest, gentlest decision that Dr. Z made to let us know that we would face a very tough road, and that if we didn’t cling to and look out for each other and our marriage, that we too could easily be one of the 90%.   Over the number of times Ken & I have looked back on this experience as we have gone through the trials of parenting under these circumstances, I believe we found extra patience, kindness, and support for each other, and I am grateful for her wisdom & candor.

As proud patriots and active fiscal conservatives, it has been interesting to face the challenges of health care costs first hand.  Ken is adamant that he would sell everything we owned before we asked a neighbor or stranger to pay a single cent for our health care.  We are fortunate enough not to require assistance at this time.  Commentary:  It’s not the very poor, or the very wealthy that are crushed by medical expenses in our society, it’s those in the middle, making $50K – $300K / year.  The poor receive better medical care than those of us with the best insurance money can buy.  Those in the middle can truly be crushed.  We have stayed on top of every bill and every insurance submission.  We have been adamant that we pay to the doctors what is contractually fair.  Even with this vigilance from 2 masters degree engineers who have held executive positions with top companies, we have seen a number of threatening letters regarding delinquent account status, as the collection companies & the insurance companies figure it out between each other.  Ultimately, it is straightening itself out, but we wonder what the impact on our credit rating of all these mistakes and poor coordination between the insurance companies and the service providers.  We were able to prepare for this, and we made strategic purchases in advance of this step into financial quicksand, but there should be some way to help the average family who faces this experience.

In our liberal government’s infinite wisdom, President Obama has taken away one of the true benefits to special needs families, by far one of the cruelest tax hikes hidden in Obamacare.  He has reduced the amount of money one can save by using a flexible spending account from $5K to $2500 effective in 2013.  This may not seem like much to many of you, but at a 25% federal tax bracket, that’s the cash equivalent of a $625/year tax increase.  To us now, and many of the families we’ve met through this experience, it means the difference between being able to pay for therapy for their child or respite care for themselves or not.  To reiterate the point, the very poor and well-off won’t be affected by this change, only those in the middle who actually implement the shelter.  This is one of many egregious hikes hidden in Obamacare known by many, talked about by few.  Simply put, President Obama intends to pay for his single largest entitlement plan in the history of entitlements in the history of the world on the backs of the very people he claims to be helping or targeting for this entitlement.  It is without doubt the greatest fleecing of America in her history, and very sad to watch it unfold.

We trust that you will continue to place your votes based on your own personal beliefs, but we’ll make a modest request to you to ask that you please look deeper than the marketing hype when casting your future ballots.  Please challenge our politicians regardless of party to address the root cause of expense, waste, & ineffectiveness in our government, whether the issue is health care, social security, Medicare,  Medicaid, education, immigration or other.  We are the greatest nation on earth, and there are Christian solutions to the problems we must solve together as a nation, if we will only hold our leaders truly accountable for being problem solvers and choosing to advocate & implement real solutions vs. just their marketing, lies, & hatred of the opposite party.

When we addressed the meager amount that our neurosurgeon’s office had settled for, we learned more about the healthcare situation in our country.  He indicated that less than 5% of the children who are candidates for radical life-changing epilepsy surgery like Savanna’s ever even find out that they are candidates.  There are only a hand full of pediatric epileptologists in the country who could have diagnosed a case like Savanna’s properly.  The reason for this is that the real money in medicine goes to other specialties like orthopedics and procedures such as spinal fusion.  The insurance companies base their reimbursement rates on Medicare.  Medicare bases its reimbursement rates on lobbying.  Medical device companies & pharmaceutical companies have much stronger lobbies than the epilepsy foundation.  A surprising statistic that he shared  with us is that 80% of back surgeries are unnecessary, and 60% require a 2nd surgery within 10 years after the 1st.  Yet these surgeons are paid 10X for each back surgery than neurosurgeons are paid for truly life changing surgeries.  That is not to say that no back surgeries offer positive, life-altering results.  But, reimbursement rates should be based on successful outcomes, not lobbying.  The most cost-effective healthcare programs in the world work on this basis.

I don’t share this with you to make you hate or judge big pharma, medical device companies, or Orthopedic surgeons.  We passionately advocate capitalism, and we are so grateful to big pharma that they had the money to invest in the many drugs Savanna has needed and will continue to need.  They will never recover their investment in many of these medicines, yet they continue to develop them at a loss, based on their guiding principles.  I share it with you, because it is facts like this that cause our best & brightest not to choose to go into neurosurgery unless they have a driving personal passion to do so.

I’ll leave you with one final thought.  My prayer during this journey has been simply to our Lord to “carry me” and to carry Ken.  This comes from the depth of my soul as I recount a poem that I read frequently as a little girl.  Many of you are probably familiar with the poem / prayer “footprints”, if not, I’ll recount if for you here:

“One night, a man had a dream.  He dreamed he was walking along the beach with the Lord.  Across the sky flashed scenes from his life.  For each scene, he looked back at the footprints in the sand.  He noticed two sets of footprints, one belonging to him, and the other to the Lord.  When the last scene of his life had flashed before him, he looked back at the footprints in the sand.  He noticed that during the saddest and most challenging times in his life, he saw only one set of footprints.  This really bothered the man, and he questioned the Lord about it.  “Lord, you said that once I decided to follow you, you would walk with me all the way.  I have noticed that during the saddest times of my life, there is only one set of footprints.  I don’t understand why when I needed you most, you would leave me.”  The Lord answered, “My son, my precious child, I love you, and I would never leave you.  During the hardest times of your life when you see only one set of footprints in the sand, it was then that I carried you.”

There have been so many times throughout this journey that I haven’t even known what to pray for.  I have simply prayed, “please carry me God”, and He has.  May He carry you, when you need it.  May He send angels to you to guide you and share your path.  May we not question His purpose, yet continue on this journey supporting each other.

Last year, when Savanna was first diagnosed, my sister in law, Kenia, and my parents gave up their Christmas to come be with us.   Dad went to church, and the priest said something that will always stick with me.  He didn’t say, have a Merry Christmas, he said, have a Blessed Christmas.  That is what we wish for you, a very Blessed Christmas.

To leave this post on a lighter note, Mom, Dad, & Kenia joined me for Christmas Eve service with the boys last year.  As we were leaving, Dad pointed up to the sky and asked Tristan if he thought the bright red light up there was Rudolf’s red nose.  I’ll never forget Tristan studying the sky, then looking back at my Dad, Grandpa Squiz, and candidly saying, “That’s an airplane, you idiot”:)  It was rude, but admittedly hysterical.  Ken broke Savanna out of the hospital on Christmas day and we were together.  My friend Thuy visited us shortly thereafter.  If you don’t know Thuy, she’s not the warm, fuzzy, emotional type, but she’s a true friend.  It’s hard to know what to say to someone like us who had just experienced what we had, but she said, “No matter what, Savanna will be loved.”  It was truly comforting, and she was right.  Savanna will always be loved and she’ll be loved more fiercely, and in a way I never could have imagined before this experience.

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A Day to Give Thanks, to God.

An update on Savanna’s situation.

She is 4 weeks post-operative, and she is well.  We have started to titrate down some of her medications, but she is still on basically the same panel of medications that she was prior to the operation.  This is keeping her quite sedated.  We are starting to reduce the Onfi first, and see how she responds.  Despite the level of sedation, we are happy to report significant changes.  The biggest change we have seen is the engagement in her environment.  She seems to see her world differently now than she did prior to the surgery.  I looked at her over the crib rail one day and she smiled at me without any stimulation or sounds from me.  To most of you that may sound silly or trivial to bring up, but for me personally, it was profound.  She had never done that before and more importantly, it was a sign that at some level, her brain is working correctly.

She has periods where she tolerates sitting up in a bumbo seat or bouncer or something similar.  It is really rewarding to see that type of progress.  We still harbor a guarded optimism for her immediate outlook as we know some of the facts.  We know that the Sabril could be helping to suppress the Infantile Spasms.  Should we lower that dosage and the Spasms return, it would be another fork in the road of her journey to put it nicely.  Also we know that if Savanna would not have struggled as much as she did during the surgery, the surgical team would have expanded the resection.  While not trying to be an eternal pessimist, it is important that we have some emotional preparation for what the future may hold.  Another surgery is quite probable, and a life-long battle with seizures is also quite possible.

Unfortunately, we are still seeing abnormal activity at times.  Just last night, she was having a really difficult time sleeping, and I witness about 6 hours of what I would consider a seizure-filled period.  I am not positive that what I saw was seizures, but it would appear she has some partial activity still in the background, and it occasionally spikes enough to cause complex or clinical indications.  I am certain that a VTM/LTM is in her near future to diagnose what we are witnessing.  She has become quite cross-eyed lately and it is asymmetric in nature.  What is weird is that the opposite eye is effected than prior to the operation.

We are told she may be experiencing many circumstantial situations as she develops a new baseline.  In the mix too is that she is growing, and with infants, things can change fast as we have learned.  So, it may be possible she doesn’t reach a baseline for quite some time.  We have scheduled clinic visits to see the doctors in the neurosurgery, neurology, ophthalmology, and genetics departments next week.  We will send our blood samples to a couple of different labs to sequence her exome and our genome.  We are starting therapy again for motor skills, speech, and cognition.

I have included some pictures here that are from the last couple of weeks.  She truly is an angel and while we live the myth of Thanksgiving nowadays, we are very thankful this year for what God has given our family.  The true story of Thanksgiving has long since been white-washed and papered over with liberal textbooks.  It is a day that requires some inward thought about the real story, our past, and the future of our country.

For those of you who might want a closer look at what she underwent 4 weeks ago, there is a hidden link on our website that shows a few pictures from the surgery. [taken down, as of 2-2013] I am not posting the link, to the pictures, just to the website.  The link is the homepage picture.  It is mobile friendly.  Warning: they are graphic.

www.kenandrebecca.com

Have a great Holiday this weekend, and hope this email finds you and your family well.

Mom and Dad

(Ken and Rebecca)

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Seizure Freedom? Maybe So!

Savanna has been home now since Friday night, and we have enjoyed some normal parts of life with the bigger kids.  We carved pumpkins, we decorated the house (a little), and made gingerbread Halloween houses one afternoon.  Trick-or-treating with the big kids was a blast, as Rebecca really gets into Halloween.  We decided to keep Savanna in, as it can be difficult to watch her closely while out.  She has a way of reminding us of the vigilance that must be taken with planning an outing.  Just when we think it is okay to make impromptu plans, she reminds us of why it isn’t a good idea.  We really weren’t that worried about her getting sick, but when you look down and see her in the middle of a big seizure episode, panic sets in quickly.  How long has she been seizing?  Maybe you don’t know – not good.  Okay, start the clock…  at what point do you intervene?  Did I bring rescue medicine?  Where is the car?  Oh yeah, I walked…  How fast can I run home if needed?  This was not a frequent sequence of events, because after the first time, it changes your entire viewpoint and planning for ‘outings’.   Her care really wasn’t that complicated at this point, but it was really stressful trying to make sure someone was watching all the time. 

I can say today, that her change from that state is simply miraculous.  After a follow-up clinic visit with the neuro-surgeon today, we feel like we have a new child.  We still see some abnormal activity now and then, but we have been told repeatedly that that is to be expected while her brain ‘reorganizes’.  Savanna now has a new outlook on life, and she needs to be exposed to as much as possible to accelerate her development.  The neuro-surgeon thinks the primary deficit she will have will be loss of attention to her right side.  Meaning, she simply won’t notice or care about something presented on her right side.  So, for time being, we will approach her from the left and then move to center or right.  He felt confident this would dissipate over time as she learns to compensate.  Visually, she will have some peripheral deficit that is permanent, but the amount is still unknown.

His comments today were very reassuring with respect to being able to travel now and just live life in a more normal way.  He did admit she had a lot of trouble with respiration during surgery, and they did not convey that fully in post-op as not to cause undue concern.  Had she handled the surgery better, they would have gone further with the resection.  Once you have experienced one of her choking fits, where the only effective relief is with a medical grade suction machine to clear her throat, one would not be surprised by such news.  Also, the anesthesiologist stayed in post-op for about an hour watching her, and looked like he had seen a ghost.  He didn’t say anything alarming, but his concern was genuine and I think he knew, that we knew, that Savanna gave them a hard time and maybe a scare during surgery.

Savanna’s progress has simply been amazing.  Each day is better than the one before.  The days are accented by someone saying “Hey come look at what Savanna is doing”.  The tone is one of elation, relief, and happiness.  Not the somber, ‘here-we-go-again’, tone of the past.  She is smiling, laughing, and rolling around.  She is pushing up on her hands and making lots of noises.  Most notably, she doesn’t appear to be having seizures like she was before.  She is calm.  If you pick her up, you can hold her, and she likes it.  It is nothing short of a miracle as far as we are concerned.   Not always, but in general, she was always trying to get away from you, and would never hold on to you or appear comforted by someone holding her.

A couple of times I sat on the floor and worked with her on some gross motor skills.  I remember seeing and hearing several people in the background talking on phones about Savanna.  They were giving out updates, and the conversations were  just overflowing with excitement and joy.  I felt like I had a staff onsite  sending out messages routinely.   It was kind of bizarre really, as my phone was pretty quiet.  However, normal life is resuming.  The grandparents have returned to their lives and we are getting back to our normal routine.   We will begin the slow, step-by-step process of weaning her off the AED’s and Keto diet.  This process will take a few months.

From this point, it almost feels like life begins again with Savanna, like she has another chance, a better chance.  Some would ask, “Is she free from seizures?”,  maybe so!

Seizure freedom, 7 days and counting….

-Mom and Dad

(Ken and Rebecca)  

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