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

 

17 thoughts on “Dare to Dream

  1. God has brought all of you on a long, & perilous journey–which continues. Lots of good news in this post-from one who ‘only’ reads! I have faith, as you do, that Savanna is achieving her full potential at this moment in time. With God’s help, she will do all possible things. I was particularly delighted to read that someone had treated her just like Austin, – that made my heart happy! Never forget, God walks with all of you, & beside Savanna. I keep her, & you all, in my prayers.

    Liked by 1 person

    • Hi Anne

      Thank you so much for your kind words of encouragement. I am glad this post gave you some happiness. Savanna is a fighter, and very persistent these days (like her momma!).

      We are blessed.

      Take care,
      Ken

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  2. Thanks for the update Ken. I know you and Becky have many challenges still ahead, but the progress and your tough decisions that made it all possible are very remarkable. I’ll personally keep the prayers going for all of you. Dad (Ray)

    Liked by 1 person

  3. Wow!!! This is an incredible update! I’m so happy for you as Savanna makes such great progress. Thanks for these Journey updates.

    Have a great weekend!!!

    Rob

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  4. I’m trying to digest this post. I’ve read it three times now.

    I don’t know you, Ken. At all. But I can relate to you in some ways. You and I are stylistically night and day when it comes to our blogging, our journeys with Faith, etc., but we share one common trait…we are both Dad’s who agonize over our kids and that which has struck them. And I mean agonize.

    It’s in your nature to be a positive force as often as you can be. I see that. I feel it. When I see that tiny crack appear, because I’ve felt it too, when you get a test score, or a setback. I have to say…I admire your strength of will and determination to hold fast. I never can. Your faith is a powerful ally.

    I sometimes wonder…sometimes, if I was more faithful, if Bennett’s outcome would be better. If I was more accepting…I don’t know. I hate to think that Bennett would suffer on my account. But on the more difficult nights I wonder. Sorry, didn’t mean to turn this into Theology 101. 🙂

    Keep up the fight…

    Liked by 1 person

    • I respect you more than your know. I read your blog posts and feel your love for your child and also feel the ‘agony’. Sometimes it is right out there in front, and sometimes it is between the lines. I understand what you mean about the differences between our stylistic approach.

      When I read your blog, I laugh out loud sometimes. The synergistic expression of your life parenting a child like Bennett while having your own issues, is second to none. I don’t know of another blog out there that I feel like I relate to more.

      At the end of the day, I want to be positive. And, this blog I want to be about Savanna’s Journey, not my Journey (but they are inter-dependent right?).

      Hey man, if you are ever in Texas….

      -ken

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  5. Thank you, Ken, for another inspiring update. I love the picture of Savanna standing on the stool in her yellow dress turning on the light and smiling for the camera. Not sure if you planned it this way, but the symbolism of that picture is startling. The mirror on the wall shows half of her reflection – it made me think once again, “wow, she is doing all of this with only half of her brain left (more or less)!” It is a true testament to the power of modern medicine, prayer, and tons of hard work and determination from all of you. Keep it up…anything is possible!

    Liked by 1 person

  6. Hi Dan,

    You are right: anything is possible.

    The picture, well, it was all impromptu. I often have the camera setup just for general daytime photos in the house. I take hundreds during a month or two period and get one, maybe two, gems like the one you mentioned. She just doesn’t yet understand ‘the camera’ – yet. It was a great moment, which we celebrated.

    Talk to you soon,
    Ken

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