She Talks! A #TBT video post…

(Savanna is 2 years, 3 months, and 21 days (842 days total) since her second surgery which completed a full TPO resection. She is nearly 8 months medication free!)

She spoke very little entering that surgery, 4-1-2013.

A “mama” here and there was about it.

A month later, it was gone.

A year later, still no expressive language, I was worried.

The ASD diagnosis helped with acceptance, coping, and moving forward.

On July 23, 2014, I took this phone video and felt enamored she responded with her signing to the question yes or no.  She emphatically responded “Yes!” in her own way with the sign.  Months of work went into this moment!

She used body language to engage Austin when it was his turn to ‘jump’.  You will see it if you watch it twice.

 

 

I honestly wasn’t sure she would ever talk.  Or, perhaps a better way to characterize that emotion is to say “I was not sure she would ever talk like me.”

The SLP’s (Speech Language Pathologists) that worked with her regularly reassured me: “She will talk!” …..if…. (a huge IF) ‘the seizures stay away’.

Here we are, one year later from this video where I caught her in the background signing “yes!” appropriately.

She speaks!

She thinks, then speaks!

She feels, then speaks!

She reacts, then speaks!

She speaks!

Here is a video from today, one year later.  It isn’t with her brother playing, but it is quite representative of where she is today with her expressive language.

 

 

It is amazing.

It is beyond what I imagined, but admittedly, not what I dreamed for my daughter at this stage of her life.

Given what she has been through, it is unbelievable.

She is working hard on the phonological part of our language.  Blended sounds, sounds that come in the medial and final position are difficult, while by themselves are clear and somewhat easy.  What do I mean by that?

For example, the “th” sound.  Seems easy, but when in the medial position, such as it is in the word ‘father’, it is very difficult for her to create the proper sound.

When its gets tough to handle, what I need is a prayer.

Prayer to the Lord our God for enabling these magnificent events to happen both in Savanna’s life and mine.

He is in charge.

He provides leadership we need, when we need it.  We act accordingly, as disciples should.

For a few moments each day, I try to slow myself down, and listen to what God has in store for me today.

And just Be.

Be quiet.

Breathe.

Read the scripture.

It fills my soul with necessary fuel to live each day to the fullest.

-dad

Three Years Later

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

 

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

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

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

Savanna:  Oh, I see! Can I try?

 

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

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

 

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

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

 

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

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

Me:  Well,  … its complicated….

 

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

Me:  Savanna, I tell you this everyday.

Savanna:  Oh? I never understood that before.

Me:  I know.

 

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

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

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

—————————————–

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

savanna blog three years later-8I find my situation surreal today.  But it is very real.  Three years after it all began, I administered the final dose of her last medication.  What does the future hold for Savanna with regard to seizures? No one knows for certain.  She is nearly 21 months seizure free and not on medication, indicative of a long period of control in her future.

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

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

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

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

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

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

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

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

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

savanna blog three years later-30

savanna blog three years later-32

savanna blog three years later-33

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

savanna blog three years later-6

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

 

savanna blog three years later-20

savanna blog three years later-21

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

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

savanna blog three years later-7

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

savanna blog three years later-4

savanna blog three years later-5

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

savanna blog three years later

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

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

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

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

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

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

Sometimes, this happens…

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

She refused to be happy.

She refused to use words.

She cried, then she screamed.

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

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

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

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

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

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

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

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

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

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

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

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

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

potty 3 potty 2 potty 1

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

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

savanna blog three years later-11She can jump now! That’s right, leave the ground with both feet at the same time (and land appropriately)!  I know it sounds trivial, but this is very difficult with children with proprioceptive deficits or dysfunction.

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

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

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

savanna blog three years later-9

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

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

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

 

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

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

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

Have a Blessed Christmas,

-Liningers

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

 

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

Guest Post – Happy Being Trevy

A thunderstorm of emotion washed over my heart as I read her recent essay entitled “4 years ago today…”  I can relate with everything Danielle describes about their day in the waiting room as Trevor underwent a complete hemispherectomy to control the spasms.  Our day with Savanna and her second surgery was strikingly similar.  Their blog, Happy Being Trevy, has information about Infantile Spasms and how it affected their son Trevor and their family.

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She has taken the time to construct a video of Trevor’s journey, their journey.  The video is incredible and a great way to tell the story.

The link to the video is below.   But first…

4 years ago today…

4 years ago today…we’d already hugged and kissed him goodbye by now. I’d run my fingers through his curls one last time. God, I miss those curls. And kissed every inch of his sweet face. Inside my heart was screaming “NOOOOOOO!”. There was an intense soul battle raging. One part of me desperate to snatch him off that stupid gurney and run away to the furthest reaches on the earth. The other part knowing we were here to rescue him. Knowing we HAD to be here. My love for him was the gravity force that held me down that day.

4 years ago today…we survived the longest, the most emotionally draining 13 hours of our lives. No day before could compare and no day since has yet to. We spent that day in a waiting room at Detroit Childrens. Feeling so very alone. So far from home. We wanted to wrap our arms around Toby and Bristel but were thankful we had left them behind. Because this was too much for us. It would certainly be too much for them. We watched party after party called to collect their loved ones from the recovery room. Until most of the lights were turned off in preparation for closing down for the night. Until the secretary had long gone home. And security had begun making rounds. And we, who were the first in the waiting room that morning, were also the last to remain. Until I thought if one more minute went by I was going to explode into a million pieces and float away. Because the emotional intensity was that strong.

4 years ago today…I sobbed when the doctors took us to a private room and told us they had successfully removed most of his left hemisphere. Those poor fellows. Asian men are known to be stoic and it was clear they felt awkward with my unrestrained mourning. But one of them had tears glistening his eyes too. My heart knit with his in that moment.

4 years ago today…over 14 hours after we’d kissed him goodbye…we finally saw him again. And he was breathing. Puffy from the fluids. Pale from the blood loss that two transfusions couldn’t hide. Wrapped like a mummy. But he was breathing. And in that moment…that was all that mattered.

4 years ago today…our son survived the Nightmare Miracle surgery that would not only save his life but would give it back to him!

4 years ago today…I had never heard my son’s voice make any intentional speech. This morning he called “Moooooommy” from his bed when he was ready to wake up. This morning he hugged my neck and said “love you”. This morning he told me “No call me Brick” because his new haircut makes him look an awful lot like the youngest child from the Middle. This morning he said “Wednesday. Tuesday yesterday…today Wednesday”. This morning he adamantly demanded chicken nuggets for breakfast. And drove me a little crazy with his cheek. Until he returned my “I love you” sign when he was leaving for school. Which melted me from the inside out.

Not every day these past four years has been easy or fun or miracle filled. But when I stop and remember 4 years ago today…how can I be anything other than joy saturated and thankful?

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I confess that it was harder than I thought going back in time like that. Difficult…but also healing. It’s easy to get caught up in the sadness of the now and overlook the joy of how far you’ve come.

If someone had asked me to write the wildest script I could imagine for our family six and half years ago…it would not have come close to the path that has unfolded. Even though this journey with Trevy is very heavy and extraordinarily exhausting, we are SO thankful for where he is today. How far he’s come. For the people who have come beside us to advocate for him and support and believe along side us.

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6 months seizure free…

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

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

Each day, I thank the Lord for giving us a fresh new day, and pray it will be filled with happiness. (I don’t think he hears me everyday?) Each day I also ask for forgiveness for my sins of yesterday and His help to be the best husband,low res -7437 father, and friend today.

What has changed since the last post at 4 months?

low res -7647Savanna and Austin turned 2 years old on September 20th. The picture to the left is very different than a year ago! A couple of days prior, we participated in a Memorial Hermann Hospital marketing campaign highlighting the benefits of MEG technology. Our local ABC13 filmed the event and interviewed us and our doctor. The 90 second news clip is here. Rebecca’s full 12 minute interview resides on their website.

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

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

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

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

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

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

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

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

She can roll over somersault style, a bit sideways, but she can do it.low res -7658

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

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

It is not all cake and ice cream though.

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

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

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

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

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

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

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

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

She surprises me with her development at times.

She inspires me as a leader daily.low res -7584

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

A short note about the rest of the kids.

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

Brandon is something else. On the cusp of turning 4 on October 7th, he continues to say really off the wall funny things. He has always done this, but it continues to get more entertaining. Right now, he is participating in PRE-K4 soccer at the Y – (a very questionable use of funds 🙂 ) His first game, he just walked right beside the coach and held his hand. His most recent game, he at least ran and was able to kick the ball. He is very shy as it turns out, and I guess in Tristan’s shadow I didn’t realize it. He is protective of Savanna while being playful in way that she just loves. Hearing that deep belly laugh from Savanna when Brandon is playing with her is wonderful.low res -7492

Austin is doing great. He is so intent focused on keeping up with Brandon during the day, and the ‘big kids’ at other times. He has a lot of new words now and is growing up fast. It feels like his first year was just a blur. I am glad we have some video to reference!low res -7483

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

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