Three Years Later

Posted on December 10, 2014 by kenlininger

If I could have a conversation with Savanna, who has ASD (Autism), and she could magically understand things the way we understand them, just for this conversation, it might sound something like this:

Me: Savanna, you can play with all the toys in the bins, not just dump them out and throw them.

Savanna: What do you mean, the toys in the bins are not just for dumping on the floor?

Me: (Silently operating a 6-12 month random baby toy in front of her, for the millionth time…)

Savanna: Oh, I see! Can I try?

Me: Savanna, not every hole and fabric loop is for inserting your finger. But it is okay if you do.

Savanna: Daddy, I wish I could stop doing that, but I just can’t.

Me: Savanna, the words I say aren’t just weird noises, they actually have meaning. They can even be put together to form what we call sentences that convey thoughts, feelings, instructions, etc.

Savanna: Oh, I just thought you just like to hear yourself make these noises.

Me: Savanna, the food we serve you at the dinner table is actually for eating, not throwing.

Savanna: Oh. Why didn’t you tell me? Maybe I will try to eat some of these things. Daddy, how come the other kids throw the food too?

Me: Well, … its complicated….

Savanna: Daddy, you mean it is difficult to do your daily tasks when I insist that you hold me all the time? You say your back hurts, why didn’t you tell me?

Me: Savanna, I tell you this everyday.

Savanna: Oh? I never understood that before.

Me: I know.

Savanna: Daddy, why do you get so excited when I put a square shape into a square hole? It’s not that big of deal you know.

Me: Well, I think it is really great and I was actually trying to get you to do it again by showing positive praise.

Savanna: Oh? Sorry, I just didn’t want to do it again.

—————————————–

Savanna’s (special needs) Journey formally began December 19th, 2011 when she was diagnosed with a seizure disorder. Her disorder took away her normal life by arresting development in every way. A symptom of an abnormality in her brain, her disorder proved medically refractory. At 18 months old, she underwent a left TPO resection (removal of ~70% of the left hemisphere of her brain) to mechanically control the seizures, which it has done. It has given her a second chance at life; her best chance. Three years later, here we sit.

I find my situation surreal today. But it is very real. Three years after it all began, I administered the final dose of her last medication. What does the future hold for Savanna with regard to seizures? No one knows for certain. She is nearly 21 months seizure free and not on medication, indicative of a long period of control in her future.

Three years later, I find myself learning how to teach in a whole new way. I never thought I would know so much about physical therapy, occupational therapy, speech therapy, and ABA. She is 39 months old, functioning at about a 2, maybe 2.5 year old level, far less with regard to expressive speech. This sounds not so great, but my heart is filled with joy! She makes strides everyday.

The power of prayer and His word have led us to this point. We made faith-based, selfless decisions and accepted the risks and consequences in search of the best chance for Savanna to thrive. God was holding our hands and leading us even when we couldn’t understand the path or the advice clearly.

While she is now considered “normal” by many, Savanna’s brain development is different from a typical child. The way different parts of the brain work together is possibly different. These differences are difficult to measure, as is the effect of these differences on her ultimate outcome.

Yes she is “smart”! She is learning in her own way, on her own schedule.

She is learning to speak! It has taken nearly 2 years to get her to appropriately say simple words like Yes and No. She loves the power in the word no, and it has become her standard response to a question before reconsidering then following her “no”…”yes”. She has a mixed receptive/expressive speech disorder that when coupled with her cognitive delays makes communication very difficult at times.

I remember when Tristan, our oldest, was about 1 year old. We would drive around and he would say “bus” when he saw a bus of any kind. It was a very short time until he understood “yellow school bus”. Savanna just started to say “bus” in the car when she sees one. And often times, she only says “yewow (yellow)”. She knows the golden arches well, and says “pway pwace” every time (unless we pass it on her blind side). It is very reassuring feeling as her parent to hear this, as it means to me, she is learning.

I sat down to write this long-overdue post, and realized so much life had been lived since the last post. Maria and her daughter Luna visited from Norway for three months while they sought treatment for Luna’s epilepsy. While they were here, my mind just paused. Every thing just kind of slipped away and it has taken some time to remember all that transpired. A few highlights…

She and Austin celebrated turning 3 recently. On their birthday, Savanna decided to take us for a walk. She took each of our hands and proceeded to pull us along. Rebecca and I were beside ourselves, as she had not ever done anything like that. She said “Hi” to the camera when prompted. It was amazing.

She really enjoyed being part of making the cakes. She cracked her own eggs with very little help. It just warms my heart seeing her understand opening a wrapped gift, not a simple concept I have learned. Turning three meant she “graduated” ECI. And should we continue with publicly funded help, it transfers to the public school system. Her awareness of and participation in her environment is so dramatically different, it is difficult to compare to one year ago.

Celebrating Halloween this year was a little different for her. She participated, a little. But the experience was bit overwhelming, and she is always exhausted at the end of the week from the intense ABA programming.

We went to the Second Annual Pediatric Epilepsy patient/caregiver reunion. She was much more active this time. Her neurosurgeon helped her put her shoes back on after exiting the bounce house. How cool is that? I think he was a bit amazed how well she is doing, maybe not. Definitely, it reinforced the decisions made in her case. Some pictures and a link to a youtube video made by the hospital (I have short spot in it…)

Link to CMHH video of the 2nd annual pediatric epilepsy reunion.

We supported Maria through Luna’s surgery and visited Maria in the hospital a day when Savanna’s school was closed. Savanna walked all the way into the CMHH pediatric day surgery waiting area from garage 5. She has never done that; I had to take a picture.

We went to Galveston beach at the end of October, and she loved the water. It was still warm, and quite clear this day. She enjoyed the waves, noticed the kites flying, and was interested in “helping” build a sand castle. We love Houston!

She enjoyed Brandon’s birthday at Chuck-E-Cheese, especially the large indoor play structure. We almost couldn’t get her out of that thing!

These activities have all been more fun (for her and us) since starting ABA. Her expressive language development has exploded. She talks to us now. In general, she can express her feelings in words. I admit, we don’t always understand her approximations, but its a start right? But for sure, she wants to talk; she can talk!

She has many words now, when just a few months ago she had none, no fault of the speech therapy she received for 24 months. She wasn’t ready then, simply put. The therapists always said the information is going “in” and one day it will all come “out” in words. They were right.

Rebecca recounts reading the ABA plan with Savanna’s “6 month goals” before she started ABA. There were goals like “say 20 single syllable simple words” and “make 5 animal noises”. She was scared that might not be possible in just 6 months time. A miraculous 2 and 1/2 weeks later, Savanna was talking! She’s blown past her 6 month goals, and we are convinced that she will be able to do anything she decides she wants to be able to do. Amazing!

She puts 2-4 words together now appropriately without prompts. She is able to parrot many words we say, even if she doesn’t understand them. She struggles with certain phonetic sounds, such as the “k” sound, like in the word bike. Her approximation isn’t even close on this one. The speech therapist notices this and feels she will get it, but it is just not happening as quickly as the other sounds.

We believe the ABA has helped dissipate her OCD behaviors and it has certainly smoothed transitions between activities and people. We are more cautious now of situations that can derail a “good mood.” And during ABA (40 hours a week) she has 100% 1:1 supervision, which helps redirect her when she starts such behavior.

Sometimes we exploit the OCD behaviors at home, for example if she doesn’t want to get dressed. You can almost always find a top or dress with a bow on it, (with a fabric loop), show her the loop with your finger in it, and she will usually be okay with wearing that outfit. I am sure some out there would say this is a bad idea. At this point, I am picking my battles.

Sometimes, this happens…

Suddenly she was very upset! What happened? What was wrong! She demanded I hold her – or else meltdown. I went about my work (holding her) which is usually enough.

She refused to be happy.

She refused to use words.

She cried, then she screamed.

She was a snotty mess. I didn’t know what was wrong.

Finally, I figured out the pantry door was open and the light was on. This bothered her terribly, but she did not want to go take care of it herself for some reason. So, 15 minutes of complete breakdown, for what? I don’t know.

And, that’s the point, sometimes we just don’t know what is going on in her head.

She does eat without throwing (too much) these days, though her diet remains severely self-limited. If you serve her fruit (except watermelon), she will protest, period. If you are adamant she try it, you should be aware of imminent flying food. I guess this is somewhat normal?

Oh those shape sorters. She understands shape sorter toys these days. But, conceptually does not understand shapes via their names.

These days, we work more on color matching. We sort 2D and 3D objects, matching like items. We work on letter and number identification. All of these tasks start simple, with organized aligned rows of items. But the goal is for Savanna to sort/match items from a random unorganized pile, with only minimal prompts. She has done so well, so quickly, we now work on puzzles too – a much more complex challenge.

Her fine motor skills increase daily it seems. She can thread a very small string though really small beads, or holes in a board. She can cut paper with scissors with some help and prompting. (wow! right?)

She can randomly draw with crayons/markers for a couple of minutes. If you prompt enough, she can make horizontal, vertical lines, and circles.

If the other kids want to color, she too is interested. I set up a space for her on the table, but she usually loses interest quickly. This situation is disappointing and frustrating to watch.

A character trait you cannot teach: Desire to Independently Learn. Yep, she has that one!

It is glorious! It is almost to a fault though as she refuses hand-over-hand assistance.

She has the ability to sit and focus for a long time with a therapist or with us as a parent. But make no mistake, it is very hands on. You have to be right there to keep her on track. The minute you think you can step away, well….

ABA has indicated she is ready for potty training. They don’t want to wait since she has exhibited so much interest in using the bathroom. We have seen this at home too, and have agreed to work with the ABA center to develop a routing for Savanna. We are excited about this addition to her routine.

She can play with her brothers for longer periods of time (without me!!) on a somewhat regular basis. She will do this when the activity is something she prefers. She LOVES the trampoline and the swing set.

She loves her platform swing too, and this has become a staple in her sensory diet – every day. Not sure how our annual trip back to the VA and KY (where this won’t be available freely or otherwise) will unfold without this resource.

She can jump now! That’s right, leave the ground with both feet at the same time (and land appropriately)! I know it sounds trivial, but this is very difficult with children with proprioceptive deficits or dysfunction.

Austin and Savanna play the “rib-bit” frog jumping game sometimes. I think it is their own language, lol. And she jumps! The trampoline is very helpful for developing her leg and core muscles. We also use the Sure Step SMO braces to help correct the pronation in her feet. A recent gait analysis showed significant pronation, poor symmetry, and wide gait indicative of low balance and tone in her core.

The scientific evidence shows we need to work diligently at correcting her gait before the age of 7, after which correction is more difficult.

She loves to get in the middle of the action with the boys. When she is in a good mood, she is right there with them. She is often the first one hurt and crying. I generally push her back “into the octagon” and gently give the boys some additional operating parameters. A pillow fight for example, is a great way to experience a lot of heavy sensory input.

Here is a video clip of her swinging. A few months ago, she could barely push the swing around and still hang on. She is a bit tired here, but manages quite well. Important to note is that she understands to get near the center of the platform to reduce the centrifugal force from spinning. It is there she can comfortably sit and eat, or whatever (notice the chips sitting in the center). She loves her swing!

This next clip is hilarious. A good use of the physio ball (not found in the instructions!) It builds leg and foot strength, increases core strength, and increases balance and spatial awareness, all with a little fun. The amount of input from the adult greatly changes the amount of input from the child. You can plainly see the differences between the Austin and Savanna here. The motor planning is happening for both, but the results with regard to timing, strength, and overall execution are vastly different. Still, she has come so far! And I am proud!

Once again, they conspired, as they usually do on a rare quiet Sunday afternoon. We were busy cleaning around the house like a bumble bees and suddenly the eerie silence is softly broken by intense laughter from outside? Uh-oh. They snatched the physio ball from the official place of storage, and managed to get it on the trampoline. Yeah, that’s right, as if the trampoline itself wasn’t enough.

I would like to say “Thank you” to all those who have helped us with Savanna’s care. Without your input, your guidance, and your wisdom, Savanna would not be where she is today.

Dr. Gretchen Von Allmen, Dr. Mary Zupance, Dr. Nitin Tandon, Tammi Rainwater with MHMRA, George Michel with MHMRA, Nikki Dupont with Reach Healthcare TCG, Dana and Jennifer at The Speech Emporium in Cypress, Dr. Allison Arthur with TCPA, and all the therapists at Tangible Difference Learning Center in Katy. To our parents and family, Thank You for supporting us.

Thank you for your interest in helping Savanna; helping us as a family. We greatly appreciate it.

Have a Blessed Christmas,

-Liningers

Guest Post – Living With Superman

Posted on November 6, 2013 by kenlininger

This is our story about Living with Superman.

Superman is unable to leap tall buildings in a single bound, he does not fly faster than an airplane and he is not faster than a speeding bullet. He is SO much more impressive than that.

Superman was born at 27 weeks due to high blood pressure causing a placental abruption and preterm labor. He was only 1lb 10oz when born. I can think of a million things I could have done differently. I can think of a million moments that might have changed the outcome. But I will never know for sure. What I do know is that since the moment that little tiny boy, who could only be measured in grams, came into this world; he hasn’t stopped fighting. And, that to me is way more impressive than the comic book hero. I live with a true life hero and my heart beats with joy.

Superman had lost his oxygen supply during the birth and was born not breathing (hypoxic ischemia encepholopathy – or HIE) and in the first 24 hours on the ventilator that was sustaining his life and allowing him to fight, he began to bleed in his brain from the lack of oxygen and then the reintroduction of oxygen. Very similar to a stroke but on a much larger scale. They call this a Intraventricular Hemmorage (IVH). This left him with a condition called Diabetes Insipidus (DI) from a portion that was damaged and now he takes medication daily for it and will continue to do so for the rest of his life. While considered a “rare disease” by the NIH – I have met many people online that have this condition from birth or by accident or because of a brain tumor. And while it is not the easiest of conditions to live with because it is VERY finicky, it is manageable. Just requires A LOT of blood work. Some days I think people that do blood for diabetes mellitus (the sugar kind) have it easy! Blood draws for us are vials not pricks.

Any brain bleed has the chance to cause delays in development and other areas, however Superman now has hypotonic Cerebral Palsy. They told us he would probably not open his eyes, move, sit, eat or anything.

In addition to all the rest, after a period of seizures in the NICU that resolved themselves, Superman now deals with a type of epilepsy called Infantile Spasms. This is a very devastating type of seizure as it basically shuts down the brain and affects development. Most children that have IS will experience an instant delay in development as well as often regress in the development they already had.

In April 2012, Superman had to have laser surgery done on both eyes for a condition called Retinopathy of Prematurity (ROP). Left untreated, in many cases it will progress and cause permanent blindness. Due to the mass amounts of oxygen used, it causes the blood vessels in the eye to basically sprout off and create new ones, overloading the retina with blood vessels that have no purpose. Although his eyes were fixed (and are still perfect over a year later) he now has what is called Cortical Vision Impairment or CVI where the brain doesn’t always register what it is seeing. Because of this condition he has been diagnosed as legally blind.

Superman came home from the NICU after 117 days – gtube dependent. Today, 14 months old, he is completely orally fed and we are on our way to mobility.

As of August 6, 2013 Superman is now again with a g-tube. He is showing signs of eating orally still as long as he is alert but is now somewhat dependent upon it to make sure he gets the proper amount of fluids.

It’s a slow process but as a family we make it together.

Superman has a sister; we call her Diva because, well… she’s a little diva with an addiction to shoes and headbands. She is his #1 supporter. For a girl who didn’t want a brother he is her world. She doesn’t know that Superman is different than other babies; she just knows he is Superman. And that’s how we like it.

Living with Superman is a challenge, it has its ups and downs – but living with Superman has brought us all more love, compassion, knowledge, and gratitude than I thought I could see in a lifetime. I look forward to learning and growing with my little boy on this crazy journey we call life.

[The following is an excerpt from her most recent blog post titled: Blatant Honestly]

But I have not been completely honest with you all.

I can explain the medical diagnoses with precision expected in medical facilities, I can update with day to day happenings with a parent’s expertise but I have never explained the situation with the realities and the gravity of the situation being the focus. Often times I shrug it off, ignore it. Not because I am not aware of it, or I live in some fantasy land where I believe everything is going to be okay. But because I don’t tend to focus on the ‘what if’s’ and the ‘what might be’ and sometimes ‘the what really is’. I know he is non-mobile and non-verbal. Of course, its right in front of me. But most days I don’t see it until I am confronted with the reality of it.

And when I post online, I don’t focus on the negatives. Maybe its because I don’t want to appear weak or overwhelmed. People actually comment on how positive I am since his birth and how they could never do it. As far as the ‘doing it’ part – if you have to you will – the positive part is a choice.

But there is a huge reality that sits in the back of my mind that I haven’t shared with many – if any. Because if I speak it then it’s real. And no parent ever wants their fears to be real. I have two fears in my life that would leave me devastatingly crippled: fear of being homeless, and fear of losing my children. I literally lose sleep at night in fear that my daughter could be kidnapped. Think its crazy? Turn on the news. Check your Facebook page. Missing pictures pop up almost daily. Scares the ever living something outta me.

But the other part of that is losing my son. Now this one is somewhat more rational but yet less rational than the first. Because we were always told he wouldn’t live. He wasn’t supposed to make it through the first week. He wasn’t supposed to make it out of the NICU. Granted he is still here 19 months later. And for that I am grateful beyond words.

But the reality of that situation, the part that sits in my heart, the one that leaves me crying in the bathroom after everyone is asleep (yes, that’s where my tears live – not on Facebook) the ones that have me crying in my car after another long doctor’s appointment – is that at any moment my son could be gone. Of course that is true for all of us, but statistically its less likely to happen to you or me. Superman is missing 45% of his brain. A large portion that reminds his body to work. My biggest fear is I am going to turn around to kiss him or pick him up and he will just be gone. With no warning, nothing. Just gone. And sadly, its not crazy – and its not out of the realm of possibilities. I don’t post these things publicly because I don’t want to post sob stories. We don’t really have any. This is just the reality for us. Its a daily awareness, something we live with every moment of everyday. There is no dramatic illness, no traumatic incident. Just reality. He could be here one minute and gone the next.

I am sharing all of this because I want to be blatantly honest with you all of what really goes on here with us.

What would you do if you lost your child and you knew you hadn’t done everything you could to try to prevent it?

That is also a fear that cripples me, but it goes along with the other part. Like everyone else we have lived in this rough economy for the last 4 years, searching for a light in the dark. When my son was born, laying there in that isolette only days old – knowing he had a brain bleed, the only words that kept running though my head were ‘stem cells’. And I was angry. Angry at politics, lobbyist, religion, anyone and everyone that had some weigh in on why or why we shouldn’t pursue stem cells. My irrational mind screamed that there was something out there that could have helped my son. My proposal for that issue in a different post. I don’t want to stray too much tonight. Then months later, I met a group of parents with children like mine that were pursuing the same alternatives I had searched for his whole life. And I found it. I believe it was divine intervention. Right place, right time. And since then the right pieces of the puzzle have fallen into place. This treatment can not only help his brain to function but repair damaged parts. While I am not naive, I know it won’t grow back what is gone, but it can help what’s there to start working like the parts that are missing. Its the best chance we have to help him survive. I wish I were just talking about having the chance to walk or talk or play with toys. But I am literally talking aboutsurviving. If those parts could be repaired that make his heart beat erratically, those parts that don’t remember to tell him to breathe because they are focused on fighting his chronic congestion or a minor cold… what if.

I won’t lie, I make my way around the special needs pages on Facebook. Like many other parents, searching for kids like theirs, parents in similar situations. And through these pages I have found many fundraisers. Some are for trips to Disney, some are for Christmas gifts, some are even for Xbox 360s. And they have people falling hand over feet to help them get these wishes for their children.

I am asking you to pray – pray for it to be laid on someone’s heart to help us. Stem cells have been shown to help improve the visual cortex and improve vision. A trip to Disney would do us no good because he can’t see enough to even enjoy Mickey’s ears. Honestly, I would never ask for Christmas gifts, but what is a gift going to make a difference of if he’s not here. And he’s non mobile so he can’t even help Dad play the Xbox – but the controller vibrations seem to get a small response.

Please. Share our story. If you can help and you feel its been laid upon your heart to do so we appreciate your generosity. If you can’t, please share our story with others, we never know who God is speaking to. I have tried my best to raise the money needed by selling things, I am trying to pull things together to make things, but I have come to the conclusion that I just cannot do it all on my own.

I am asking that you pray for my son to get a life saving treatment. I don’t want to just IMPROVE his life, I want toSUSTAIN his life. Give him EVERY chance he can have.

I posted the other day that he grabbed my finger and stuck it in his mouth. I cried – because I could see the possibilities. I said to my husband – just think of how much the stem cells can do with this. And most days I feel as if its slipping away. Since we have stopped the seizures, some minor development is taking place, and I know at this point, time is of the essence. They tell you that the first years of childhood is when the brain develops the most – its even more so for those with brain damage. This is when any rewiring that is going to happen will take place.

So please share, please pray. I am not asking that anyone give until it hurts – that is reserved for God, but if you are called upon to share our story or help us – I am not asking anyone to make our day a little easier with gifts – I am asking you to help change our lives. Change Superman’s life.

Here are the current ways to donate:

http://www.gofundme.com/2yttsw

Local and National branches of Wells Fargo Bank – Account name: Living With Superman

Paypal: livingwithsuperman@satx.rr.com

She has a wonderful blog at www.livingwithsuperman.com

Savanna Sitting Up and Then In Her Walker

Posted on February 16, 2013 by kenlininger

Hi everyone,

A follow-up to the previous post. Our friend Lisa from California is visiting and Rebecca and her took the kids to Galveston today. Admist the help in getting them out the door, I ran across some video taken recently in preparing the cameras for an outing.

Video

Taking a break from the deep cleaning, I wanted post this video. It shows her sitting up and then later that day in her walker. She isn’t walking yet, but we use it to help her put weight on her legs to start getting her used to it. These two segments were both captured on Sunday, February 10th. The last 30 seconds really summarize what it is like in our house right now when Savanna is happy. Brandon is in rare form! I watched it a couple of times and just laughed out loud! A fun memory worthy of sharing.

-Ken

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

Posted on December 19, 2012 by kenlininger

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.