About kenlininger

Parent of Savanna, author of the blogs, husband to Rebecca, learning about all things epilepsy and autism.

Luna’s Story: An Update

The meeting with the neurosurgeon prior to the surgery described the treatment scenarios on a scale of least invasive to most invasive, along with a likelihood of success in Luna’s specific case. The chosen path was not the most invasive, leaving a portion of her left hemisphere connected and functioning with the hopes it is not involved in seizure onset. This decision was based on experience and the best medical science available today. It was not a mathematical formula with a guaranteed outcome, but rather a first step. One that if successful, leaves her the most natural motor function possible. If you didn’t read her initial story, you can find it here.

On November 6, Luna underwent what is called a TPO resection/disconnection in her left hemisphere. A known consequence is significant visual field cut in both eyes on the right side, a dense right sided hemianopsia. The actual procedure went very well and Luna recovered quickly. Here is a picture of good news from the waiting that day (Savanna was not particularly photogenic this day!)

 

surgery day luna

 

Luna like most in this immediate time following surgery, is quite unhappy often.  She doesn’t understand what happened to her or why. Her head itches, and probably hurts, but she can’t tell us in a way we immediately understand. She cries, and we do what all parents do, we just try to make it better any way possible. Her behavior and demeanor reminds me so much of Savanna during these days. I wish the pertinent doctors could be more aware of what this is like. When you try to speak with them about this, they really just don’t seem to care or have anything to help in the way of guidance, wisdom, or advice. I have come to realize they just don’t really know how hard it can be; how exhausting; how stressful. It is not to a fault in any way, it is just reality. You just can’t know unless you live through it personally.

Maria is returning to Norway completely emotionally drained, mentally exhausted, and physically hurting from holding and carrying Luna far more than you would ever carry or hold a normal 19 month-old.

The thought of being on a couple of airplanes for nearly 18 hours is just daunting to me, but she is determined.

So how is Luna?

 

luna after surgery

 

luna after surgery-2

 

The incision site looks great. She healing physically very well. She is not experiencing any complications.

Luna is much more calm overall. She is more focused and engaged with her environment.

She is changing rapidly during this time of recovery.

Some noticeable suspect activity has been seen. Luna needs more time to heal before officially ruling on this suspect activity, and a chance still exists that this activity will dissipate on its own.

She has some sensory processing issues she needs to work through, a process very difficult with the constant disturbance in her brain. Now she has a real chance to overcome these challenges, and in the short two weeks post-op we are already seeing these changes.

Luna has to tell us what she needs, metaphorically speaking.

 

luna after surgery-3

 

Prior to the surgery, I worked and worked with Luna to stand and take steps. The hypotonia in her feet and legs is significant. She stands but with locked legs, and muscle grading is poor – much like our Savanna experienced. After surgery, she is so much more focused and able to “think” about something such as walking. Here is a short video that is just amazing. I could not have done this with her a couple of weeks ago, without more or less carrying her through the process. She would have tried to turn left circles the entire time and cried while doing it, or as Maria calls it ‘protesting’. Now, she is very motivated.

 

 

What do you feel as a parent in this situation? What do you do next?

Well, first, you have to learn to wait. This is harder than it sounds, because the academic body of evidence is growing to act sooner rather than later with pediatric cases.

As a parent, your world hinges on the surgical success, something that can take some time to appropriately cast judgement.

You research others’ stories with an obsessive compulsion that can render you insane. With red eyes, you seek out that other child who looks just like yours; has seizures just like yours. What was their treatment path and outcome? How can I interpolate and extrapolate their path into mine? You fixate on their story, for better or for worse. But this is what we do as a parent of a child with intractable epilepsy in this ‘Google-centric’ world.

While not entirely healthy, you come up for air once in a while and find scholarly articles to educate yourself in an objective manner. Then you remember discussions with the pertinent doctors, the ones you put so much trust into already, and let their guidance help show the way. You go back and re-read diagnostic findings, again to help educate yourself.

You second guess every decision made in your child’s care. You realize that you cannot go back and relive anything, try anything differently, act differently or more quickly. This time has passed and all you have is the future, on a new path post-op.

To use a very American analogy… At this juncture, as a parent, you have left the college sports ranks and joined the professional athletes. When you run through the tunnel onto the pro playing field/court, the same game is very different. And as a pro, success means embracing this change. You have to expand your mind. You must adapt to a larger set of variables, more potential consequences, and then re-calibrate your mind with regard to what “success” really means. Going back to the college days, is no longer an option.

On top of all this brow-beating and compulsive ‘googling’, Maria has secured a work position here in Houston for the next couple of years and sold her beloved house in Norway. She returns to Norway today to finalize her move to the USA for employment and spend much needed time with her other daughter. We will get to see her again in the future and look forward to seeing Luna’s progress.

IS Awareness Week: Luna’s Story

Here in Houston, an 18 month old girl from Norway named Luna awaits surgical intervention to control her epilepsy. Her mom knowing full well this is Luna’s only chance to get real help. She has experienced more than a year of uncontrolled seizures, with only a few brief periods of control on steroid therapy. She is suffering from Infantile Spasms, a very catastrophic form of childhood epilepsy.

Luna 11-6-2014

About a year ago, I came across a post in a FB support group from a desperate mom looking for help. She posted videos, and asked for assistance and advice about interpreting the video and what she should do. Already at this early stage, she was questioning the Norwegian doctor and plan of care. I reviewed the spine-tingling video, and saw right away a likely cluster of IS, and a second process that seemed very asymmetric in clinical presentation. She was so similar to our Savanna, but yet so different.

She explained the treatment plans in place from her neurologist. She translated documents for review. I advised her how cases like hers are handled here in the USA at a facility familiar with IS, the kind of tests usually ordered and why, and why it is so important to move quickly and accurately with the workup.

As the workflow progressed in her treatment, at a small hospital in Oslo, I remember experiencing a sinking feeling after her clinic appointments with her neurologist. It just didn’t sound like their doctors saw the situation as an emergency, nor did they have the resources to appropriately evaluate Luna or treat her such that she would have the best chance at seizure control.

Two things I learned over the past few years dealing with IS/childhood epilepsy: 1) Time is Critical, and 2) Workflow (the process) is Important – especially when the cause is idiopathic or cryptogenic. This is not to say a symptomatic case should not be treated similarly. Etiology can play a significant role in therapy choices or schedules.

It became clear after about 6 months, Luna simply wasn’t going to get the best chance at seizure control in Norway. We talked frequently and the idea of traveling away from Norway for help was born.

I kept having to remind myself, that Luna is in a socialized healthcare system, and this can be the way it is in these extreme cases in such a government-controlled healthcare system.  While Norway does have a more appropriate hospital for Luna, it was the access to the services that seemed draconian after seeing what is possible in other countries, especially the USA. For those that have lived through the nightmare of IS, can you imaging having to wait for nearly 6 months to get your first 24 hour EEG with video? Me either. Until that point Luna only underwent only 15 minute EEG diagnostics, without video.

High dose steroids were the only therapy that had a positive affect; producing brief seizure free periods. Several other drug trials failed to control Luna’s epilepsy and also resulted in marked negative side-effects.

Even a trip to Bonn, Germany, resulted in a “come back in six months” outcome, after diagnostics produced results insufficient to justify additional diagnostics. Here in the USA, those same results most certainly would have justified an additional scan or two. I remember being so let down by the results of that trip, beside myself at how different other countries view IS.

Finally, 10 months after her journey began, she was able to get an FDG-PET scan, (her first one!), only after a epileptologist in Australia called in the order to a facility in London. Another expensive “self-pay” excursion to another country, much like their visit to Bonn.

Luna

By that time she had also contacted our doctor here in Houston, and had arranged a consultation date.

Access to surgical services looked viable in EU and in AU. And the doctor in Melbourne seemed confident about what Luna needed. Suddenly, the outlook looked good. Timing became an issue in the EU as surgery was many months away, and access to socialized services in AU seemed out of reach after some effort.

Two months later, she arrives here in the USA, after having raised nearly all the necessary funds to cover the cost of a “self-pay” surgical workup and epilepsy surgery.

Austin-Savanna Third Birthday-17

A streamlined plan consisted of a week of diagnostics followed by a week of information review, then surgery the following week. Celebration!

Luna-2

Luna-3

2nd pedi epilepsy reunion-11

Then suddenly a question during the VEEG/LTM: Has she been tested for CDKL5 mutations? In that one second, the entire plan appeared jeopardized. A thorough review of  records produced no test results. Calls to the Neurologist in Norway produced no immediate answers. Surgery now on hold, a comprehensive targeted genetic panel was initiated. It took three weeks to get results, during which time the Norwegian Neurologist finally confirmed she was tested for a host of genes in question, and was negative.  Exhale!

So we have a new schedule for a surgical date. All is a go, again!

Then the unthinkable: she gets sick. A common cold, that of course produces the cruddy cough, and the sound of doom: congestion. Then it produced ear infections, which was icing on the cake.

How she made it nearly 5 weeks in our house without getting sick is beyond me. We are performing every possible prophylactic measure to get her healthy as the battle with Anesthia continues. Yes, battle is the correct terminology. The procedure Luna is going to undergo requires several players on the team. One is the Anesthesiologist. They really don’t care at all why she is there or the reason for the procedure. It is so frustrating when a doctor who’s only involvement in her care is that day’s events can derail concrete plans, for a clear runny nose.

There are two types of people in this world: 1) Those who say Yes, I can help! and 2) Those who just say No.

It takes work to say YES or be positive. It requires assuming more risk. It often requires making difficult decisions and sacrifices. It is a conscious choice to say yes and be positive.

It takes zero effort to say NO and be pessimistic. It requires assuming no risk. It requires no further decisions or sacrifices. It is easy to say No and be negative.

In this case….. It’s an over the phone diagnosis: your surgery is cancelled, and I really don’t care what you think. Call you neurosurgeon’s office and reschedule two weeks after her last sneeze. Just the Friday afternoon call a neurosurgeon enjoys about a Monday procedure.

This position minimizes the risk assumed by you and by the institution. Which is interesting because the other doctors and the institution have agreed to allow the neurosurgeon latitude to operate – which may not work – and yet still leave her with permanent deficits. But, wait! Patient Safety!

When in doubt, pull this one out: It’s All About Patient Safety! Sorry, but no surgery. This is like liberals using the race card in a debate when the know they have lost on the facts. It is infuriating and in this case quite insulting. Right, it is much safer to continue to suffer a catastrophic seizure disorder than the potential of a sore throat after surgery. Right. Any parent of a child like Luna arriving at this moment sees right through this argument. Enough said.

We have finally reached The Big Day. An emotional blender full of tears, anguish, and hope. All the sacrifice. All to arrive at this moment in time where you kiss you child goodbye, not 100% sure what is going to happen. May God keep our children safe and guide the hands helping Luna today.

Galveston Oct 26 2014_-16

Today is Luna’s last day to suffer from IS.

You can follow her journey on FB here.

An Inflection and a Touch of Back-to-School Stress

Not to diminish the anxiety involved in two kids starting pre-school and one starting first grade, but seriously, it just isn’t that big of a deal for me. Our [neuro-typical] kids are looking forward to going, and this exhausted daddy is too! But, there is some stress related to managing the back-to-school routine. All the stuff to buy. The return of the pain-in-the ass lunch food rules and schedules (is there a hashtag for that?). Lists of rules, that boil down to a rule for every exception (and every exception to the exception) known to mankind regarding public education, when the reverse policy works just fine. Who has to be where and when? I could go on-and-on… but, I really don’t care all that much after all we have been through –  I am not stressing (though I may complain from time to time).

Then there is Savanna,  (who doesn’t like peanut butter anyway…)

Savanna (1 of 2)

The date is set. The moment has arrived. Not exactly the same acute drama as brain surgery, but definitely high-running emotions about what may result from ABA therapy. Savanna starts September 1. This therapy is widely considered the best intervention for ASD related behaviors.

It is not scientifically proven to ‘work’ (meaning cure) but evidence shows children who go through this type of intervention have the best outcomes.

This means everything is changing. Schedules, therapists, daily routines. Much like for any family with school-age children.

Savanna will also receive OT and ST at their facility, which means discontinuing her current regimen.  It means adjustment to entire new set of therapists.

Early Childhood Intervention (ECI) will end on her birthday in September, but her attendance schedule at ABA, effectively ends it day 1 of ABA.

Also discontinuing is vision (VI) and orientation & movement (O&M) through the public school system since Savanna will not enroll in PPCD (Preschool Programs for Children with Disabilities).

I hear quietly from people in the know, this label (qualifying for PPCD) is like jumping into a pit of quicksand. It is so easy, and honestly, the only option for most. Just do the eval, and then boom! You are enrolled! Except, what is not explained is the process to ‘get out’, or remove the labels segregating her from the mainstream crowd. I see mainstream education as an option for Savanna. I want her to have the opportunity to attend Kinder at her normal time if during the next three years she proves she is ready. If not, then we go another route. Is it just a dream at this moment? Maybe so. But, I am not yet ready to relinquish my dreams for that the epilepsy has most likely stolen. Perhaps over time, my dreams will evolve.

I have been closely involved with her care for more than two years now as a stay at home dad. I have interacted in detail with all the specialists and therapists. I know the insurance nuances well. I am the judge, jury, and executioner when it comes to dealing with her behavior and actions. I am also her safe place most of the time. I am keenly aware of when it is time to just hold her and when it is time to push her away and press the issue. Her current team is in tune with her as well in a similar manner. The new therapists and caregivers are not aware of her subtle signs, and so a new chapter begins.

Suddenly, for about 35 hours a week, I will not care for her directly. Everything is changing.

She is still on the waiting list for the facility closes to us, and close the pre-school (yeah that was planned…) I don’t anticipate enrollment until 2015.  Houston traffic sucks BIG time. It is a 2-3 hour driving experience everyday. I should not complain about this, but I am, sorry.

While we enter this season of everything changing, we have also noted changes in everything regarding Savanna’s abilities.

As we have weaned down her [single] medication to half the dose she was taking, we have seen a marked increase in memory, visual acuity, and coordination. Is it medication related? Who knows. It could be her natural developmental progression. I find little scholarly information available about effects in 2-year children on this medication.  To me, she seems dramatically quicker to react and respond to me, her siblings, her therapists, and the entire world around her. It has been quite an awakening.

 

Savanna (2 of 2)

 

She is using utensils now to eat regularly. She has really taken pride in being able to either stick something with a fork, or place food on a fork/spoon and then eat it. Sometimes she uses the back of her hand to model the utensil. I have caught a few of these moments in stills and very short video clip.  Note the response at the end of the video – very appropriate.

Savanna blog (4 of 4) Savanna blog (3 of 4) Savanna blog (1 of 4)

 

 

 

Recently, I video taped another OT session with Nikki. Here is a great clip of her with a shape sorter.  She finally did it! During the activity she was very engaged. She manipulated the sorter to find the right hole for the shape. We have worked on this activity for nearly a year. I am so happy to see what she accomplished, but at the same time, typical kids learn this in a far shorter amount of time. What should I extrapolate from this reality with regard to her development pace or ultimate outcome? I know some of you are thinking, (Just be happy with who she is today!) Everyone wants the best, the most, for their kids. Savanna is no different from that regard. I dream big for Savanna. But this accomplishment, while a great achievement on its own, is easily interpreted with an ominous uncertainty on my part.

 

 

Another example. Coloring. We have worked with Savanna on coloring (scribbling of any type, on anything, with any type of marking device), and only in the last few months has she started to “get it”. She sees her siblings coloring, and wants to participate, but just cannot for reasons related to cognition, visual motor integration, and coordination.

I have never worked with Austin (her twin) on coloring. Again, he sees his siblings coloring, and wants to try. At 2 years old (albeit almost 3), he decided he wanted to color something recently. I instructed him this way (more or less) “The crayons and markers are on the table. Get a coloring book, tear out a page and go to town.” Yes, his 4-year-old brother was there too, but he was engrossed in his own masterpiece. I did not help him at all during this time as I regularly have enough to manage. If he is being quiet and in sight at the table coloring, what can go wrong? (Yeah… that is another blog post altogether!) Savanna colored something in a highly supervised and prompted environment with a therapist. Here is a picture of the two results.

 

savanna blog coloring pic (1 of 1)

 

Some would say it is not fair to compare her to a normal kid. Really? This is what happens everyday. Not just by me, but by most who interact with her. What is up, and what is down? Does she need this or that, or not need this or that anymore? I am not trying to over-analyze the situation – don’t take me the wrong way. Simply dismissing my observations and analysis does not equate to an irrelevant or non-existent situation.

Make no mistake: Savanna is excelling. She surpassed my expectations and those of many professionals who met her before she was a year old. It is time for me to change my goals, not just for Savanna, but for me as well.

I look at this final picture and I see a metaphor flash before me of our last [almost] three years with Savanna. As I watch her climb to the top of the slide, I see our life challenged with fear, heartbreak, mourning, anger, rebirth, remaking, extraordinarily complex parenting work, and now, maybe we reached a point of inflection in our lives; she in hers. To ABA we go!

-dad

Savanna blog (2 of 4)

Dare to Dream

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

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

Happy! Happy Happy!!

Happy! Happy!! Happy!!!

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

Just playing around during my EEG.

Just playing around during my EEG.

Yeah, I have done this before. The suitcase was filled with favorite toys and foods.

Yeah, I have done this before…

MRI day. Not happy camper.

MRI day. Not a happy camper.

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

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

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

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

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

Well, what does this mean in her everyday life?

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

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

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

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

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

For the first time…

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

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

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

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

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

 

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

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

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

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

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

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

 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

-dad

 

Occupational Therapy? What is it? video…

Savanna has been receiving therapy since the early days of her epilepsy diagnosis and the resulting regression. These are called ‘services’ in the special needs world. Occupational Therapy (OT) is one type of service she receives. What is that you might ask? No, we are not teaching her to sew, paint, or cook, (although all that would be great).

Given her significant developmental delays that are global in nature, she needs help learning about her environment around her. Unlike a typical child who “just does” in many respects, she needs more deliberate education than the typical 2-year-old toddler. We teach her about aspects of how she occupies her time; what the shape sorter, the puzzle, the baby doll, the play fruit and veggies, are really about.

Since her medical diagnosis of ASD, we have learned that a more intense approach to her education works better. Overcoming her behaviors that restrict her learning is part of the challenge. But, with OT, the goal is maintaining interest and focus on a play-based tasks, completing those tasks, and making a new choice. What has worked well for Savanna is an ABA-style approach. We don’t just present the shape sorter, dump the shapes, and say “Okay, let’s go!” We break the process down into very small, guided segments.

We challenge her brain while recognizing her knowledge absorption rate.

We teach her about her visual field cut in a way that slowly brings her to see it and understand it for herself.

We work to reduce the difference between the  motor skills of her right and left arms.

We focus on completing a task, cleaning up, and then making a choice about the next activity.

We encourage desired language skills.

All this, while battling her restrictive behaviors that often derail all education efforts.

Here are some video clips from recent sessions.

 

 

This is a little routine where she stacks the blocks in a free manner. She did great here, stacking 5 blocks!! (…and she can now stack about 9 blocks)

 

 

Notice we don’t just hand her a block, but it is a “blue” or “purple” block.  We are always teaching. Also, notice she adjusted her holding hand when the stack go too long to manage. This action is a good sign of awareness.

 

 

The magnetic shape sorter was simply awesome this day! To see her do this so quickly was amazing.

 

 

The giant shape sorter speaks for itself. She has been working on this one for about 5 months now. Today wasn’t her best day with this toy, but still a good day.

 

 

 

2-pc puzzles. Very, very simple but yet very challenging in both concept and real play.  The way we are starting the 2-piece puzzle is the way all previous activities started so many months ago; hand over hand, strongly guided.

The fruits of her labor in these sessions overflow to the rest of her life.

She listens more and screams less.

She obeys more and disobeys less.

She is able to get into more mischief, but also understands more about what she is doing (right or wrong).

She is learning.

I recently remarked about skills acquired by young children while learning to walk. Unlike those thoughts, I feel strongly our intervention in the form of OT and Cognitive therapy has altered her course. Maybe it hasn’t changed the ultimate outcome, but I do think we are affecting the rate she gains these skills. It is at her own pace, but one we follow closely and encourage in every way.

Many Thanks to Nikki at Reach Therapy and Tammi with ECI here in Houston, Texas.

More on her developmental progress in the next post.

Humble Beginnings, with video

When we started this journey, we like others took video. I never posted it however, because quite frankly, this was a very short part of her journey.  And everything happened so quickly, I just never dwelled on this media until recently. And lately, I have had numerous requests for “what did it look like for Savanna?”

Twins Feet

She presented classically as do some infants with FCD (focal cortical dysplasia), meaning a severe structural problem in one are of the brain that affected her brain globally.

She did have “hyps” (hypsarrhythmia), a specific kind of chaotic brain wave pattern, diagnosed only with EEG (electroencephalography equipment, i.e. all those electrodes glued to her head). She had the clinical presentation of the Infantile Spasms, as seen in these videos. Rebecca had noticed the regression.

It was emotional for me to look back and watch these videos with my current level of knowledge of what it really meant. We knew nothing of what we didn’t know.

You can hear this in Rebecca’s voice in the first video, as Savanna was experiencing a cluster of IS (Infantile Spasms) before we knew it was IS, (or West Syndrome).

These videos are just a few days before diagnosis. You can see in the first one, where capture begins in the middle of a cluster, that the spasms were rather violent as she was very healthy at this stage.

 

The second video starts mid IS cluster, and ends with a complex partial seizure. During the IS cluster, you can see the momentary collection of wits in Savanna as she cries, then it just all goes away, and “Boom!”, a seizure. She experienced a classic ‘salaam’ seizure pattern (in clusters of about 8), where her head and arms flew outward and then immediately contracted inward in the matter of a second or so. She always had a right to left roll of her head as well which I think was indicative of the FCD.

At about 49 seconds the complex partial seizure starts. It is not a cluster, but just one seizure that lasts about 25-30 seconds.  There are no words to describe my feelings when I hear her single sneeze at about 10 seconds into the complex partial seizure. This would become a trademark I could count on later in her life.

 

The third video is another collection of Infantile Spasms. She is more tired in this video, as the seizure are taking their toll.

 

The final video is in the hospital after an unnecessary ordeal in the pediatric ER and several hours of VEEG monitoring. This was one of many events caught during our first VEEG, which went for nearly 36 hours.

 

Pediatricians and PA’s are the first to see a child presenting in this manner. Parents don’t know the emergent nature of the situation, they just know something is wrong. Many doctors might mistake this for reflux, Sandifer’s syndrome, or the Moro reflex.

If you suspect your child has this condition, I would recommend the following action:

  1. Take a lot of video. Try to get the entire body in frame.
  2. See your pediatrician first, with video in hand.
  3. Email the pediatrician videos.
  4. Be as pushy a necessary to get to the doctor, but a good video seen on the doctor’s phone between clinic visits will drive action quicker than just being a pain in the ass on the phone.
  5. The pediatricians consultation with a neurologist can streamline your experience in the emergency room. While this is an emergent matter, it is not immediately life threatening, and therefore not a condition properly handled by most Emergency Rooms. This is not judgement of emergency rooms or their staff. Rather, it is recognition that they are not staffed, equipped, or trained to diagnose and treat this condition with authority. They will initially go down a path of eliminating possibilities of what might be provoking the seizures, which is noble and correct, but an endeavor best addressed in an in-patient setting. Unfortunately, one must typically penetrate the membrane of the ER to access help in this scenario.
  6. Get informed. See the Links and Resources section of this blog for a start on where to go for information and help.

A Published Essay in the Dads of DisAbility Project

just some Stay-At-Home-Dad experiences

When you search around for the paternal viewpoint of having a child with a disability, you struggle to find information. The maternal viewpoint on the other hand, plentiful information all around.

Gary Dietz authored and collected 42 pieces and organized them in a strategic way than keeps you wanting to read more. The book is titled Dads of Disability, and it is a compelling read.

Some essays are about an acute period, such as a specific event or moment in life which was poignant. Some describe the author’s life experience more broadly by discussing multiple events that span significant periods of time.

Gary divided the collections of essays into sections that resemble the cycle of life. Such as life, there is a beginning, middle, and an end. Some parts very joyful, some parts somewhat dark. All are important and provide borders for a portrait of life, life as a dad…

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