Tip-Toes, Uh-Oh’s, and a little Autism Awareness

Posted on April 5, 2014 by kenlininger

I recently had our second appointment with Dr. F, at The Autism and Learning Center here in Houston. I tip-toed through the consult with pure confidence and all answers this time. You can read about my first experience here. Dr F asked specific questions. I had specific answers with specific supporting documentation in hand. I spoke when spoken to and the visit went smoothly. These Specialty Clinic Visits have an invisible itinerary, you can read about that in The Specialty Clinic Visit – 101.

A point came when I realized she was hung up on incomplete labs. I tried to get the necessary draw completed, but as usual Savanna would only give us so much blood. (A recent blog post, The Blood Draw, describes a typical event these days.) I insisted they review the records as I was confident we had historical results for everything she wanted. She suddenly assigned another assistant to begin reviewing the records for results with labs which could answer her questions and support my assertion.

Onward with clinical observation.

Suddenly Dr F introduced to the two other people in the room that were silent to this point. One person was her new nurse practitioner (NP) that we would be seeing long term. She was as nice as could be with a very warm and inviting persona and it just seemed like someone I could talk to about Savanna at length with ease and without judgement. Then I find out through her own admission she is not only a mom, but has a child with special needs as well.

During the clinical observations period, Savanna responded to verbal instruction once and pointed at something she wanted repeatedly. She didn’t randomly and compulsively dump the toys nor insisted on the doors be closed to the room. (These things still happen at home, but didn’t at this particular time.) It was phenomenal. Dr F. remarked, “I didn’t expect to see this today!”

My words, “I know.”

This time I created the awkward pause. So, I decided to interject some mushy conversation since the fact-finding and presenting part of the visit was clearly over.

Since our last visit, I processed the diagnosis to the extent 2 months would allow. I don’t see this situation as final. I am on a mission to give my daughter the best chance she can have in this world. This is why I am here today, not because you wanted to see her for a follow-up, but because I respect your judgement about what she needs to help her.

Some of the reading material you suggested I have read. My knowledge about my daughter’s condition has increased dramatically over the last 2 months.

Thanks to being labelled with an IDC9 code of 299.00 (ASD), the therapy allowances are suddenly unlimited (for now). (Smiles all around in the room?)

I initiated another speech evaluation (here is your copy by the way…), and increased her therapy three-fold with new goals from the evaluation. While she isn’t receiving ABA therapy yet, we are doing more in that direction versus less. It has made a difference just in these 2 short months.

I see her problematic behaviors more defined in black and white and this guides me on how best to help her understand the world around her. We have tried diligently to be more effective at therapy, formal and otherwise. I see her improving quickly. But I felt like I could not state that in the beginning, because you didn’t really care what I think.

So I had a moment where I sounded informed, confident; like someone who leads from the front versus the stereotypical paternal figure who is considered by many in the medical professional community to be sub-tier and capable of care slightly beyond babysitting.

The assistant combing through the records confirms records are available that speak to blood work Dr. F. ordered, so no further labs are necessary.

Dr F felt Savanna would benefit greatly from having ABA therapy and was disappointed to hear we couldn’t get into the schedule at the center she recommended until about September. Dr F suggested if we had the means, we should consider an abbreviated ‘slip-shot’ version (as she put it) until we could get full-time placement in a center.

On the ride home this particular day, these thoughts crossed my mind with respect to Savanna’s progress.

A typical child moves through the phases of learning to walk almost regardless of parental input. Our sitting, crawling, and walking gives example but few parents understand the mechanics of these movements. Why would you unless you were a therapist. Normal kids just do these things! We endlessly try to prevent bad falls. But that is about it for the typical family. The determined child will learn how to walk on their own, at their own pace, regardless of the parental input. Perhaps Savanna has experienced some of this type of development as well, and is just doing better all on her own regardless of all my efforts. I like to think I/we have a high level of impact on her development. But this measurement is elusive and will never be known in all honesty. Scientific evidence trends toward better outcomes result from aggressive early intervention, but it is definitely not a guarantee.

On a more fun note…

We recently went to The Houston Livestock Show and Rodeo. It has been a long time for me, but I actually came to this show with someone I worked for many years ago, with livestock. I worked the event, and didn’t walk around much. Being there sure brought back a lot of memories of working on the farm. Mommy was in her element for sure. I was most worried about Savanna and the large crowds. I feared she would have a meltdown. Ironically, our six year old was the one who was fraught with fear that we were going to lose someone. He couldn’t have fun until we found the big slide…! Savanna, well she had the time of her life!

Thanks to the help from Dana and Jennifer at The Speech Emporium, Savanna is breaking through the screaming with words! She can consistently say Mama, Dada, and Uh-oh (when she drops something on the ground)! We are working on ‘go’, animal sounds, and signing. She seems to know the ‘more’ sign but doesn’t do it with consistency. Augmented communication and picture exchange programs on the list to try. This latest spurt of development has been wonderful to witness. I honestly wasn’t sure it would ever happen after what she has been through. Here is a short video demonstrating these skills.

Despite the orthotics, she is tip-toeing to reach things on the counter. She can use her step stools now to assist her in getting what she wants. I have seen her pick it up and deliberately put it near the cabinets so she can use it to access more counter top items. Her ability to explore her world just increased in dramatic fashion.

And Savanna loves to explore her environment. Yes, her activities seem more self-limited to a narrow set of activities or routines not including any imaginative play and little social interaction.

She generally likes opening drawers for the sake of opening them. Sometimes she will even dump whatever resides in the said drawer if she can reach the contents. If she dumps something that gives her a positive ’cause effect’ response. For the longest time, it seemed that is all she would do it dump toys, empty shelves, and help keep the sofa clear of anything.

Today, she opened a drawer, and stood on her tip-toes to look inside! I have not seen her do that until recently. She looked inside, then at me, and then inside, and then closed the drawer when I asked. It was that look in her eye that really grabbed my attention, “I am looking in this drawer and I know you are watching me Dad…” I see this in typically developing kids, but never have I seen it in Savanna until this experience. Little moments are great.

Recently, I was upset at why the floors suddenly were so dirty in our house. I clean all the time! Something was amiss! I started checking Savanna’s toddler cups for incorrectly installed valves or lids. I was surprised to find she had bitten through the rubber mouth piece on two cups. Interesting…

This past weekend, she managed to crawl out of her crib on her own. Uh-Oh! I have known she could do it for some time now, but she never tried until recently. While a really great development cognitively and physically, it is unsettling as this is a game-changer for sure – as all parents understand.

Savanna loves to climb. She has master maneuvering the steps on the playground and scaring the daylights out of me with her wobbly off-balance gait once at the top of any play structure. She has even decided to climb the chain ladder on the structure just behind our house. It is quite something to watch.

She has many teachers when it comes to climbing! Tristan is at the age where his strength to body weight ratio is ideal for scaling all things ‘play structure’ related with amazing ease. And Brandon and Austin are not far behind him in ability.

Recently we tried to conduct a PT session outdoors at a nearby park. The same park we visited many times.

I did have to rush a little through the wake-up process to make it to the park close to on-time. Savanna would have none of it, absolutely zero participation. Not just that, but her behavior devolved into just screaming and crying, uncontrollably, nearly inconsolably. She normally loves this park?

But she was finally in full meltdown mode, for all to witness, and I couldn’t stop it.

What was different?

Perhaps the abbreviated transition from nap time? Difficult to say at this time.

She eventually calmed down and we did a couple of things for about 5 minutes, but she was on edge.

This was my reminder to be Aware of the Autism.

2 Years Ago, It Was Christmas 2011, and…

Posted on December 24, 2013 by kenlininger

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Have a Blessed Christmas everyone and safe travels!

-ken

Epilepsy Awareness, Disneyland, and a New Savanna Video

Posted on December 10, 2013 by kenlininger

I know this post should have come last month, but my time to write has been very limited lately. I wanted to share two moments that because of Savanna, I experienced completely differently than I would have otherwise. I have come to realize that Epilepsy is an invisible syndrome for most that don’t have other identifiable features that would indicate a problem. I have found that once I briefly describe Savanna’s situation to someone I don’t know, I usually hear in return “I have a sibling/friend with epilepsy.” And therefore are educated, right? Sometimes. I find it amazing that epilepsy touches so many in the world. It can have a great impact on a significant number of people around that person.

Most recently, I was at a chiropractor getting muscle work done. This is one of those times when small talk content is a decision. I want as many people to know about Savanna as possible, because there is simply not enough awareness out there that this happens and sometimes dramatic treatment alters the trajectory of the patients life in magnificent ways. The first step to the solution to any problem is awareness. IS is rare, and often misdiagnosed far too long. Anyway, do I say I have a daughter with epilepsy in remission from surgical treatment, or just leave it out? It takes some experience to decide on the spot whether or not to mention it. I decided to mention it this time, after all I am in a healthcare organization and there is usually more awareness than other places.

I have learned how to condense the situation into one or two sentences. She seemed interested. Then here comes the statement (big surprise): “Oh, my best friend has epilepsy.” She continued, “Yes, she has trouble maintaining her driver’s license because of the seizures.”

Engaged at this point, thinking she understands at least a little, I respond, “What kind of seizures does she experience and what medication is she taking?” I ask this not to pry, but rather I am always very interested in people who battle this and live somewhat normal lives. This person responds “Uh I don’t know anything about any of that.” At this point, I became upset. I tried to stay calm and understand her perspective. After all I have learned, I now know some people can only handle so much information. But, I really couldn’t say another word to her after that. I pretty sure she understood the silent treatment, and I hope it left an impression.

So, you have a ‘best friend’ who has seizures, and you don’t know anything about it other than she has trouble maintaining a driver’s license? That just seemed idiotic at that moment. A best friend knows far more than your driver’s license woes. What you have is a texting buddy who happens to have epilepsy, is what I thought to myself.

Maybe the best friend with the epilepsy doesn’t want to share any more information than that with you, true, but doubtful. If I could go back and relive that moment, I would have crawled out of my turtle shell and said something. What exactly, I am not sure. But, if I had a best friend with epilepsy, I would want to know what kind of seizures they experience and the triggers. I would want to know what medications they were taking. I would want to have a clear understanding of what to do if a seizure happens in my presence. Mostly, I would want to know how I could be the best friend possible.

My second experience is disability related versus just epilepsy, but it fits the theme. When Savanna was just starting to have breakthrough complex partial seizures, we had plans to visit Disneyland. The experience was excruciating, yet I felt surprisingly calm at the same time. We scheduled a 36 VEEG months prior for 2 days from that point. It was the best scenario possible. (What are the odds?)

While at Disneyland, I noticed scores of children special needs and disabilities. I had just never seen them before, for various reasons. There was a couple near us when we were getting lunch. It was clear they both had Down’s Syndrome. The young man seemed normal other than the typical physical features people with Down’s Syndrome develop. The woman appeared to have more physical challenges and had a custom wheelchair.

They gathered their things and took off for the bathroom at one point. I wanted to say hello, and ask them if I could help them in any way, but I hesitated and don’t know why. It became clear they were not there with anyone else, or if they were, they were not around at that time. I watched as the navigated the huge crowd and suddenly imagined a very difficult situation when they actually found the restroom. The mechanics of what they were about to undertake seemed impossible.

I remember my heart overflowing with emotion for a second (or two), and thinking about Savanna’s future. Who is going to take care of her if she needs a lot of assistance? What about when I die, who will take care of her? Will she out live me? Will anyone love her the way that man loved that women? Will she even be able to understand Disneyland? I also remember talking to Rebecca briefly throughout the day, and as it turns out, she too had a heightened awareness of the people around us. We both noticed so many people who that day at Disneyland opened our eyes wide to challenges some people and families face.

Infantile Spasms wrecks the emotional stability of the parent, as well as the brain of the child. It is so easy wallow in the ‘what ifs”. It can consume you. As I think back about that day, I probably would not have noticed these people in the same way nor would their presence have affected me as much. Why is this important you might ask? It is important to me now because I have to chance to help others affected by this syndrome by sharing our story, our testimony. Through this mission, I now am closer to God, and just a better person.

Savanna has helped me be aware. She has inspired me to further my education through researching all aspects of her syndrome, treatment, and overall care. Savanna is doing well, really well. She teaches me everyday. I leave you with a video of her latest progress. It speaks for itself.

-dad

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

6 months seizure free…

Posted on October 1, 2013 by kenlininger

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

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

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

What has changed since the last post at 4 months?

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

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

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

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

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

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

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

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

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

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

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

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

It is not all cake and ice cream though.

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

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

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

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

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

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

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

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

She surprises me with her development at times.

She inspires me as a leader daily.

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

A short note about the rest of the kids.

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

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

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

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

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

Posted on August 16, 2013 by kenlininger

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

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

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

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

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

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

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

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

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

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

I encourage you all to read her post.

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

-ken

Milestones: Savanna progresses while Daddy falls over the hill…

Posted on May 2, 2013 by kenlininger

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

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 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.

Back yard fun with a planter box on a Saturday

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.

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

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.

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.

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…

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.

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….

Posted on April 8, 2013 by kenlininger

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.

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.

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.

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.

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.

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

Posted on April 3, 2013 by kenlininger

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.

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.

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.

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

-dad

Sometimes, Less is More: Less Brain Tissue with Focal Cortical Dysplasia Is More Freedom From Seizures.

Gallery

Posted on April 1, 2013 by kenlininger

This gallery contains 7 photos.

We have been blessed with witnessing a profound new beginning for Savanna after her first resection at 13 months of age. Today, God willing, we are expecting a new child to emerge from the operating room again as she undergoes … Continue reading →

Savanna's Journey

Infantile Spasms. Partial Epilepsy. Surgical Treatment. ASD.

Category Archives: Parenting Special Needs Children

Tip-Toes, Uh-Oh’s, and a little Autism Awareness

2 Years Ago, It Was Christmas 2011, and…

Epilepsy Awareness, Disneyland, and a New Savanna Video

Guest Post – Living With Superman

6 months seizure free…

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

Milestones: Savanna progresses while Daddy falls over the hill…

Our baby is home….

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

Sometimes, Less is More: Less Brain Tissue with Focal Cortical Dysplasia Is More Freedom From Seizures.

Gallery