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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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.

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.

dadlifeblog

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