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

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!

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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.

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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.

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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…

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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.

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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.

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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.

Another Diagnosis Day: Autism #2 (Video)

My apologies.  I included a video in the original post (at the end), but it didn’t work for some reason. It is fixed now, or you can view it here.

It begins at Christmas after returning from our long trip to see family. A few clips of time on the Christmas gift of a trampoline, Austin falling asleep in the booster seat at dinner, Savanna during O/T, and then some selfie video trying to get her to talk for the camera.  Enjoy.

Another Diagnosis Day: Autism.

I have struggled to write this post like no other.  Unending research and editing that evolves into complete rewrites has left me tired. I will cut straight to the chase. A two-hour assessment of Savanna by a specialist resulted in the medical diagnosis of ASD, (Autism Spectrum Disorder) January 13, 2014. Unlike her epilepsy, we were not blindsided with this news as we have seen it coming for some time. You can read the beginnings of concern in the 6 Month Seizure Free post.

[Sidebar. For those finding this post searching for Autism and Epilepsy: a brief history. Savanna was diagnosed with IS and CPS at 12 weeks. Treatment for IS was successful. CPS became medically refractory. She underwent a left TPO resection in 2 stages concluding on 4/1/2013.  Still seizure free nearly 1 year later.]

The diagnosing doctor (Dr. F), was very direct, to the point of being hurtful with her demeanor. I think she had the best interest of the patient and family in mind, but it didn’t feel that way during the assessment. I had mixed emotions about the diagnosis. I left the assessment feeling relief, sadness, thankfulness, and a bit of depression all mixed together.

I admit, I do feel some relief from the diagnosis. Why? A trained professional evaluated my daughter and diagnosed her with ASD, a disorder that not only explains many of her difficult behaviors but that gives us new direction and new hope that she will get through this; that we will get through this.

I do feel some sadness from this new diagnosis. I read a lot of similar family blogs and study scientific literature about her situation. From what I have read, these problematic behaviors are not a result of the brain surgery; in that she is ‘only delayed’ and one day will not be delayed, but normal.

I know in my heart the situation is more complex than just the need for extra TLC. We have been adrift in a sea of unknowns, ‘maybes’, and ‘maybe nots’, and I feel thankful for the new direction.

I am thankful someone in the professional medical community sees what I see. Often times I feel alone managing the chronic medical issues of my child. Moments like these I feel support, understanding, and recognition of how difficult the situation is regardless of how well she is progressing relative to her initial prognosis so early in her life.

Then, the doctor leaves the room. You exhale, begin comprehending and embracing every word that person said. I cannot lie; there is a new wave of depression that swells over me. What do I do now? What does this ultimately mean?

As a SAHD (stay-at-home-dad), I am also her daily therapist. I work on compliance, cognition, language, motor skills, etc (outside of all the formal therapy of course). Generally, I do not feel like the ‘fun’ parent despite all efforts to supervise therapy in a play environment. Sometimes, I think I provide security for her, and when she recognizes that it feels good. I struggle with the balance managing time between Savanna, Rebecca, and the other kids.

When Mommy is not working, it is all fun! Mommy can walk down the stairs, scoop up Savanna in dramatic fashion at the end of any given day, and conveniently answer the knock at the door. The visitor is greeted by a Savanna who is suddenly elated to be with Mommy!

Our situation probably looks wonderful to the visitor of 5 minutes. Everybody seems happy during these times. Not even 10 minutes prior she was entrenched in an epic battle for some reason; tears, screaming – you name it.

It is then too that communication ‘about how great everything is’ through video and voice calls occurs.

Everything is great. And, many any of you may wonder what I am talking about, as from afar, nothing seems amiss. I would argue the difficult times are more difficult, but the good times are better and more frequent too. Usually, I don’t like to be in the community when Savanna is having a bad day or time. I don’t take pictures of these times, and usually don’t take video. But, this is becoming unavoidable as time goes on.

It is great to see her learning through the crying, screaming, and wining. I mean this sincerely too, because this was not always the case.

It is great that her motor skills have developed in a way that she is ambulatory and can explore her environment and tackle playgrounds. This has helped tremendously with her emotional regulation.

It is great that she is able to satisfy some of her compulsions as they change. And since we now recognize some of these compulsions, we can help soothe the situation with some proactive measures. For example, we can make sure all the doors are closed in her little environment here, and that mommy’s purse is either out of sight or on left should only. These are known as non-functional rituals.

It is great that she is very aware of every screw hole, or any hole or dimple, in every toy. These discoveries derail therapy sessions and create insatiable obsessions it seems. Trying to control this behavior is challenging. This is known as a preoccupation with a part of an object. While often cute to the casual observer, it is abnormal in intensity and focus.

It is great that she loves yogurt covered raisins. It is unfortunate that she will eat almost nothing else. Satiation eventually occurs and the fixation moves to the next ‘favorite food’. She has what is known as a self-limited diet (don’t we all at some level?), but hers is severely limited. This keeps us dependent on her feeding port more than we hoped at this point in the journey.

It is great to hear her babbling about two to three sounds with what seems like some communicative intent.  We must be patient, because every child talks at a different time. This is what everyone tells us. But as the weeks and months pass… what then? We continue to model words with practical function but her rate of acquisition of these particular skills is very slow at best. It is frustrating for her and us too.

Most of our friends and family are eager to debate or discredit the ASD diagnosis in a loving and well-meaning manner.  “All kids do these things. My [normal] kid did ________ when they were little.” Or, “My friend’s child would only eat ______ for a year…and they were normal.”

I would like to just agree with you collectively and move on.

Many of you also may wonder “She is so young. How can [they] tell she is Autistic?” Autism is a clinical diagnosis at this time. It requires either a medical professional to diagnose the disorder medically or a behavioral therapist to diagnose it from a behavioral perspective.  So how do these people diagnose ASD? They both use the same tools.

Specifically, Savanna was diagnosed using the CARS2-ST. (Childhood Autism Rating Scale, 2nd edition, standard version – there exists a version for Asperger’s Syndrome which is –HF), a toolkit developed over a 15 year period from 1971 to 1986 involving more than 1500 patients. You can read all about it with a quick internet search. Above 30 is considered ASD that is mild to moderate.  Above 37 (with some additional factors) is considered ASD that is severe. Savanna’s raw score was 46.5. Standardized results were: T-score of 61 and a percentile rank of 86.5.

The CARS tool is only one modality of measurement. But, scientific evidence shows it aligns well with other methods for diagnosing ASD at her age when employed by trained professionals.

Life can be challenging with a child like Savanna, especially in new and unfamiliar environments. Her compulsive behaviors are cute, but they become restrictive. And, if she can’t satisfy the compulsion, emotional regulation suffers, and attempts to help her regulate have varied outcomes.

When she cannot understand, be understood, or be satisfied, her unhappiness and frustration boils over in 2-3 year old fashion -on steroids. It is different from what I have experienced with our other kids, because they can communicate in a way I understand. With Savanna, I am often left guessing about how to help her.  As a result, her behavior varies widely throughout the day.

Yes, I have figured out what she needs and when, for the most part. But addressing her needs in a way that minimizes the screaming really isn’t helping her overcome the communication barrier.

We too are learning as a family. We reinforced bad behaviors at an early point since her second surgery. At the time is seemed harmless and so wonderful that she could laugh and push her brothers – that she was even capable of it! It is not funny anymore. And let me tell you, teaching her to stop such behaviors is its own challenge.

Many believe for children on the spectrum, some of the intense frustrations are rooted in their inability to communicate. I would agree with this generalization with regard to Savanna.

Her intentional communication skills are at about a 12 month range.  Even still, she exhibits deficits not present with typical children. This is not a guesstimate or just my opinion, rather the result of years of a scientific approach to measuring and rating speech and communication abilities. Some examples…

She does not eye gaze or a gaze shift when trying to get an object from a person. She does not look at our faces with the intent to understand what we are looking at, or to communicate her desire. This means she doesn’t associate the holder of the juice cup as a necessary part of the conversation to get the cup.  She will just continue to scream at the cup instead of shifting her gaze (eye contact) between the holder and the cup, indicating to the holder she wants the cup.

She does not consistently point at anything for any reason, at this time. Yes she points, but it seems random in occurrence even if an appropriate gesture in the moment.

She doesn’t modify her behavior if she isn’t getting what she wants, unless you consider screaming louder a behavior modification (which the therapists don’t!).

Socially, she is not learning from observation in the same way or rate as a normal child learns. At first glance she seems very social. When you watch her longer, you realize there is very little reciprocity (positive or negative) in her behavior which is quite abnormal. I will say though, that having her around all of our other kids (supervised and in free play) is probably her best social therapy.  She is learning about social interaction from her siblings in a safe and loving environment.

I have noticed too that diet, gastrointestinal balance, and the right environment can have a dramatic affect on her natural happiness. None of those things are constant though no matter how much we try to keep them that way.

Sometimes, after some torture in the bathtub (otherwise known as: ‘just trying to wash her’), we chase her around the room and she loves it! Mommy plays “I’m gonna get you!!”, and Savanna goes wild with laughter. This happiness is much like happiness our other children experience and is such a blessing at the end of a difficult day.

Our subscription to the science is lifelong and wholehearted. That does not mean we will not question decisions about her care but rather engage our doctors in educated conversation about our options, her options, until she can decide for herself. We will secure as much therapy as appropriate and focus on a new path of learning and new way of learning.

In our last clinic visit, Dr V said this “…let’s see how her language comes along…” The implied relationship of her overall development in relation to her language development is quite profound.  I didn’t really understand what she meant at first, or at least the magnitude of it, as she was so nice about how she said it.

The more I research our situation, the more I understand the implied meaning of that statement. Given her experience with such cases, and all of the circumstances, it is probably the best bellwether we have at this time with regard to her ultimate development.

Savanna’s Autism is not classical in the sense most people think of it. Many people say, “She doesn’t look Autistic?” She has a major neurological developmental problem to start with, so perhaps all this is related. An interesting thought: there is nothing to say that person who meets the criteria today but no longer meets the criteria at some point in the future, ever meet the criteria in the first place.

We know undoubtedly that our part in this is to give her the very best chance we can, as much therapy, love (often times tough love), & encouragement as possible.

I have more to share about Savanna, but have been mentally blocked by this essay. I leave you with some nice pictures from the last couple of months, and a video.  (The ice pictures are from a recent “winter storm” here in Houston, a rare event I understand.)

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"""Static"""" (What happens if you just sit on the trampoline and others jump.)

“””Static””””
(What happens if you just sit on the trampoline and others jump.)

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So not sure why the video is so challenging in this post.  It doesn’t seem to want to play for many. I apologize. I am trying again now.

 

dad life.

Reflection. I can do this sometimes late at night or very early in the morning. I think about our family, what an amazing journey it has been. In less than a month, I will be the Dad of a 6 year old. Good grief, where did the time go? I often find “mom” stories out there, written as family stories. It is rare that I find the “dad” stories.

Today, I want to share a post from a Dad named Ross. They have twins along with a older child, very similar to our situation. Their pregnancy was rife with danger and uncertainty, yet the conclusion was pure joy and miraculous. This particular post from this Dad exudes thoughts and feelings I had not only when our twins were born, but when I unplugged from the workforce to be a SAHD. He does follow up with another post (part 2) that does describe the fun moments in their day to day journey. It is amazing how small those were at the time, but how big they become later. Our twins are older now, but boy does this post bring back memories.

I have many things to share about Savanna’s Journey as of late. It has been a fast start to 2014. We have already met our insurance deductible (in theory), and January is not over yet! Stay tuned. Ken.

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Dad_DaughterI haven’t written a blog post in awhile and that’s mostly due to the fact that every day is the same. Wake up around 4, hold a baby until 6, feed the twins at 6, Maebyn wakes up at 8:30, feed Maebyn breakfast, feed the twins again, feed Maebyn lunch, put Maebyn down for a nap, feed the twins again, Maebyn wakes up from her nap, feed Maebyn a snack, feed twins again, MaK gets home from work, feed Maebyn dinner, feed twins again, put Maebyn to bed, feed twins again, space out on couch, feed twins and hope to go to bed for a couple hours…. And repeat.

Ross and MaebynThe day to day adjustments have been hard and taking care of three kids is not easy but by far the hardest thing that I’ve learned through these last couple of weeks is I no longer have a life outside of…

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A Message from Mom: Dear Dr. Von Allmen…

First a little context….

We set out on our trip to Kentucky and Virginia for Christmas early, so Rebecca could squeeze in a work trip to Kettering, OH – which meant we would be compensated for traveling.  A day after we arrived in Louisville, she left on her business trip.  Scheduled to return on the 18th, she called me to tell me she leaving at 12:30 pm.

I got a call around 5:30 pm from her saying she was now just leaving.  I was frustrated.  I was sick.  Savanna was sick.  Tristan was sick.  It was becoming unpleasant as Savanna was a complete handful.   We all lived through it-

A few weeks later back home in the routine, she sends me an email with a response to a letter she wrote to Savanna’s doctor.  The timestamp was 3:28 pm on the 18th of December.  But she told me at 12:30 she was on the road?  Something must have happened in Kettering that kept her there but also allowed her the time to compose such a beautiful letter.  She never mentioned to me that she sent a letter.  I sent one too, but not nearly as articulate (sorry GVA!)  Rebecca rarely has time to contribute to the blog directly and this wonderful piece deserves sharing.

It captures her thoughts and feelings at this time of the year.  I completely agree with her expressed feelings about Savanna’s treatment, the regard for her doctor, and the wish to help others.   I might have a wider field of view with regard to ‘how she is doing’ than Rebecca, but that is just me.  More on this in a future post…

…………………….

Dear Dr. Von Allmen,

I want to thank you with all my heart for the amazing care you have given Savanna (as well as me & Ken) through our journey.  When her spasms began, I was afraid to even dream that she might be one of the rare “lucky ones” who could be spared from a lifetime of seizures & the many associated challenges through a miracle surgery.  I prayed like I’ve never prayed in my life for God to guide us and give us the strength and energy we needed to survive and care for her.  I know in my soul that he led us to you.  The confluence of factors that had to come together for us to move to Houston, for Savanna to get the right diagnosis and treatment as quickly and effectively as she did could only have come by His hand.  Why she (we) were found worthy, I will never know.

I have so much admiration and respect for you, as a mother, as a woman, as a doctor, and as a bold entrepreneur in your field.  You saved Savanna’s life, her quality of life, and in doing so, mine as well.

She’s doing amazing.  We traveled to Louisville, KY for Christmas, and it’s pleasantly reassuring to see her go through the common childhood illnesses of Strep throat, ear infections, and the like.

She’s happy.  She’s healthy.  She teases us by walking and looking back over her shoulder to make sure we are watching / following her.  She dances and shakes her booty on request.  She waves and blows kisses.  She plays cars with Austin, and wrestles with Brandon.  She giggles when thrown in the air or on the couch.  She runs and giggles from “I’m gonna get you” when I chase her and eventually give her zerberts on her belly.  She’s putting things into containers & taking them out.  She’s starting to show an interest in books with a few torn pages as casualties.  She’s social and likes to explore and meet new people.  She snuggles.  She climbs up and down the stairs.  She’s starting to make more sounds in addition to “mama & baba”.  She’s starting to use more inflection, and saying pa pa, da da, …  She’s starting to do puzzles.  She’s graduated from AFOs to less intrusive orthotics.  Ken feels good enough about her progress that he is talking about possibly going back to work next year, which will allow me to possibly cut back to 20 hours / week, down from way too many hours.

None of this would have happened without you, your dedication, your training, and your willingness to aggressively treat her.

Savanna was first diagnosed on 12/19/11.  We spent that Christmas Eve & most of Christmas Day in the hospital before Ken broke her out.  It was hard to hear “Merry Christmas” that year.  My dad wished us a “Blessed Christmas”, and we found that to be more appropriate.

If you have anyone going through a similar situation that needs someone to speak with, especially at Christmas time, please provide them with my phone number.

Have a Wonderful, Merry, and Blessed Christmas with your precious family.  If you ever, ever wonder between long hours or thankless tasks, if what you’re doing is worth it, know this, it absolutely is, and I’m so grateful to you, Dr. Tandon, and your entire team for what you’ve done for us.

Rebecca

2 Years Ago, It Was Christmas 2011, and…

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

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.

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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