2 Years Ago, It Was Christmas 2011, and…

2 Years ago today, I was in a hospital with Savanna on Christmas Eve, a few days out from the life-altering news Infantile Spasms diagnoses bring.  Like nearly all parents blindsided with this situation we followed doctors recommendations for a treatment plan without question.  In reality, we were just trying to survive.

2 years ago, we didn’t know our baby had focal cortical dysplasia type I and IIa resulting in a lesion spanning the temporal, occipital, and part of the parietal lobes in the left hemisphere of her brain.

2 years ago, we didn’t know our baby would experience refractory complex partial seizures that would leave her severely developmentally delayed.  The seizure activity was so frequent, her potential development was largely unknown.

2 years ago, we initiated advanced genetic testing for which we are still waiting on results today.  Off-the-record phone conversations have revealed no definitive genetic cause, for reasons outlined in this post.

2 years ago, we had no idea our baby would (or even could) undergo radical surgery to rescue her developing brain from the intense seizures.

2 years ago, I had no idea that Savanna was in a small sorority of patients  eligible for surgical treatment and how it is such a blessing.

2 years ago, I thought I was good father.  I thought I was a good husband.  I thought I was pretty smart.  During these last two years, Savanna’s condition has cleansed me of many of these misconceptions.   I am now better at all three.  Absolutely nothing can prepare you for this situation as a parent.

2 years ago, I never dreamed I would stay at home and raise children, lead the care of a special needs child, attempt to manage refractory seizures; learn about epilepsy.

2 years ago it was Christmas 2011.  I brought our baby home from a 9 day hospital stay that included her first big ‘diagnosis day’.  You can read about the emotions of that day here (not well written, sorry!)  I thought it was ‘over’; meaning, finish the ACTH and then she is okay right?  For some yes, not for Savanna.

Today, I marvel at the progress modern medicine has allowed her to experience.  Faith in God, following his guidance, and trust in his leadership has proved righteous.

Today Savanna continues to impress us with her abilities that advance daily.  Delays are still present, but far less noticeable.

Today, Savanna still has challenges, but not seizures.  That is nearly 210 days!

Today Savanna is not cured but, her epilepsy is in remission.

Today, we as a family thank the Lord for his guidance and support.  I thank myself for listening.

Today, I help others blindsided with this situation.  Savanna’s outcome thus far is not the same for all, and this knowledge is humbling.

We are in the middle of a trip to Kentucky and Virginia.  The usual sicknesses have afflicted our family somewhat.  It happens when you transplant an entire family to a new location.  Overall, we are healthy and thankful for the journey.  Being around family is great at Christmastime.

Have a Blessed Christmas everyone and safe travels!

-ken

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.

cutie pie

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?

baseballtrevyblogbling

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.

trevys MRI

The Emotional Roller Coaster

First, some housekeeping notes:

November is Epilepsy Awareness Month.

The Infantile Spasms Community on Facebook, is recognizing November 3-9 as Infantile Spasms Awareness Week.  The professional community is recognizing December 6-10 as Infantile Spasms Awareness Week.  This is sponsored by  the Child Neurology Foundation.

I intend to share stories from people affected directly or indirectly from epilepsy.  If you would like to share your story of how epilepsy touched you or your family, please contact me at ken lininger @ gmail com. (no spaces in the name)

Many of you know, we did battle IS in the beginning.  Savanna exhibited classic signs of Focal Cortical Dysplasia.  That is, intractable simple/complex partial seizures even though successfully controlling the IS.

Continue reading

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!

low res -7616

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

low res -7634

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.

low res -7544

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.

low res -7652

(A Shared Post) – What Parents of Special Needs Kids Want the World to Know

Nearly 5 months after completion of a TPO resection,  Savanna is doing well.

She is taking steps, she is engaging in the world around her.  She is having periods of self-regulated behavior.  It is wonderful, pure and simple.  Here is a video of just how pure and simply wonderful it is at times.

Now I think to myself,  “Wow! Maybe she could actually be well enough to ride the little bus (dare I say the big bus)!”  There was a time, when that did not seem like a real possibility.

It is not all roses with Savanna though, as is true in most households with small children.  She still struggles to regulate herself at times.   I struggle to effectively help her.  When this problem unexpectedly goes on for hours, it is overwhelming and exhausting.  There are no pictures or video of these times.

It takes all the patience you can muster sometimes.  Just when you think she deliberately picked up the widget and put it in a container, you realize…well, hmmm, we need to keep working on that.

And then there is Austin, our control sample.  I stop and take a moment away from Savanna.  And, I find Austin carefully populating the divided sections of his hi-chair tray with cereal – sorted by type and color – after I hastily dumped a few handfuls of several types of cereal in a pile, in the middle of the tray.  He does this without any initiation from me or unwitting leadership from his brothers.  He just does it naturally.

The healthy, natural, normal brain is a wonderful thing to see.

I work daily at carefully choosing the best steps to take down an unlit path with Savanna.  I feel most days I make good choices, and others, well, let’s just say I step in ‘it’.

2013 August-7256

Sometimes I sit down try to write about what I would like to tell others about being a parent to a special needs child.  But the words get tangled and the thoughts misconstrued.  Here is a link to a post written about this subject by a mom in our church.  Savanna is still quite young and her ultimate outcome is still largely unknown as are the challenges she may face in the near future.  I relate to her post, on many levels.  Perhaps Savanna’s young age coupled with the aggressive resection have altered her life dramatically.  And, maybe I won’t have to experience some of the feelings she describes.

As a final thought… God allowed us to choose Houston as our new home.  He did this knowing we would receive the right care for Savanna.  And we have realized such care.  He did this knowing we would meet wonderful neighbors.  And we have met such neighbors.  He allowed this knowing we would be surrounded by people who care and want to help.  We feel blessed.

I encourage you all to read her post.

What Parents of Special Needs Kids Want the World to Know.

-ken

Sunshine After the Rain

There is nothing like a 3400 mile road trip to bring out the best behavior in everyone – all stuck in the van for what amounted to north of 64 hours.  My apprehension taking Savanna on such a long road trip was high.  Her demeanor the past three months tempered my expectations.  In addition, results from the Bronchoscopy and EGD scope of her esophagus showed nothing was wrong.  Rebecca took her that day, and I was home with the other kids.  I remember getting the call, and actually feeling depressed.  I desperately wanted something found to be affecting her that could explain her lack of eating and near constant agitation.  Despite the fact she is not having seizures, we cannot live like this.  For the first time, I actually thought maybe we made a mistake with the brain surgery.  It was like a dark cloud was following her (and me) and the rain just wouldn’t let up.  I said a prayer that day for God to give me strength to carry on.

Yes, there was some less unhappy time, even some photo opportunities in the past 3 months.  But, I remember no discussion prior to surgery other than the common complications and rare unintended consequences, such as infection, hydrocephalus, and paralysis.  I did learn how to help her regulate her behavior, but it required a lot of heavy sensory input from me, and it was exhausting.  I just could not do it for more than 2 or 3 hours at a time.  At which point, I just had to put her down.  She could not just be held without a lot of stimulation.  Here is a short video of what she looked like during most of her time awake since the surgery (just before the trip)

Travelling in the car proved easy really, as Savanna really enjoyed the constant motion and movement which is known as vestibular sensory input.  Knowing how to regulate her behavior externally through my actions, I actually expected an easy car ride.  But she wasn’t just easy to manage, she was really happy at times.  It was refreshing to witness.  At the hotel, the alternate personality emerged, (and so did the Ativan®).  An hour or two was all we could endure at that point, and we had to intervene.

First stop on the trip was my Dad’s place in VA.  They live in a modern log cabin on Lake Anna, a man-made nuclear power plant cooling reservoir.  Lake Anna is nearly 17 miles long, populated by people who love being near the lake.  The obvious enjoyment of lake living overflows from their property onto elaborate docks complete with second story living areas, slides into the water, dry docks for several different types of watercraft, duck blinds, and even an airplane hangar or two.  It seems more developed each time we visit.  Rebecca had to work in DC, so I took all four kids out on the pontoon boat with Grandpa and Grandma 2 days in a row.  We pulled them around on the tube until they just didn’t want to tube anymore.  I even took Savanna out on the tube with me, and she really enjoyed it.   Before, after, and sometimes during, was challenging with Savanna as usual.

2013 Vacation-6819

Then on the third day there, a miracle happened.  Her morning was typical.  Inconsolable for about 5 hours, then nap time, and then she awoke and didn’t cry!  Like the sunshine after the rain, Savanna was happy. It was like a new beginning that day.  I didn’t know what to think or even how to appreciate it?  It was a relief at first.  She wasn’t screaming and crying constantly and I assumed that she would start crying again soon.

She became a Mommy’s girl instantly.  She wanted little to do with me, especially when Rebecca was within sight or earshot.  How selfish was I to be a little depressed by this particular behavior, being the only one who could seem to regulate her for any length of time in the past few months.  The coming days saw another leg of the trip (550 miles to Louisville, KY) where the other grandparents and family live.  She could not have been happier once at Rebecca’s parents’ house.  She smiled.  She laughed.  She was very deliberate with her actions and movements.  Her cry changed to one of ‘look at me!’ rather than the boo hoo of ‘why is this happening to me?’  The shallowness of my thoughts during those first days would soon be overshadowed by the change we saw.

I really think God was watching us and was acting.  I tried to explain to those around her our first night in Louisville that this had just happened.  My words felt like they became awkward, as none of them have really seen her in the last 3 months.  I should have just kept quite.  Looking back, what did the past really matter anyway?

The joy of peace and happiness filled the air.  All seemed right in the world.  I learned on this trip not to disturb such joy with unnecessary conversation.  I am still learning how to choose the right words to formulate responses to questions from many different types of people.  I am still learning how to exude happiness, elation, and even satisfaction about how great she is doing compared to where she was less than 1 year ago.

I have immersed myself in her every detail of her condition and care, delving deep into how persons like Savanna ‘recover’.  I have results from Early Intervention testing, advanced genetic testing, detailed clinic notes from many types of doctors, and feedback from therapists who spend most of their time with kids like Savanna.  I spend time helping others work through similar situations, providing support, just trying to listen.  All of this activity brings gravity to Savanna’s situation.  Yes she looks great.  Yes, only Savanna knows what she is going to do in this world.  Yes to all the anecdotal advice we are given.  But my vantage point gives my a different perspective.

A broken bone healing is how I think many see Savanna’s situation.  During this trip, the cast came off, function resumed, and now she is ‘normal’.  Just put her back with the other kids, right?  What is your problem Dad?  What, she won’t eat?  Well, you need to learn how to feed her – don’t you know?  Okay, maybe.  Maybe everyone is right and I am over thinking some things [but I don’t think so].

2013 Vacation-7115 2013 Vacation-7197 2013 Vacation-1020927 2013 Vacation-6980

Most professionals would agree that the broken bone example is over simplification, despite how she is acting at the moment.  On this journey with Savanna, I am learning how to converse with people about her situation at various levels.  Numerous times on this trip I found myself misguided in conversational direction.  I was too argumentative with my know-it-all attitude, and too late to change course aside from shutting down the conversation.  Live and learn.

Character flaw aside, I really enjoyed also watching Tristan, Brandon, and Austin spend time with their cousins and especially Savanna’s happiness with her Mommy.  I felt blessed by the end of the trip.  We let Tristan have a camera during the trip and just let him go to see what he would capture.  Attached are some of the photographs he captured.  Each day I see a little man emerging in Tristan.  I wish I could just freeze him just how he is so I could have more fun with him at this age, but life goes on.

2013 Vacation-7000 2013 Vacation-7052 2013 Vacation-7065

Our trip back to Houston was without incident, and Savanna has remained for the most part happy.  She seems much more engaged with her surroundings when she isn’t just wondering around on the floor crying.  She is exploring, learning, and having fun.

We accepted the arrival of our Au Pair, Ruth, from Australia.  Ruth is a great addition to our family and the kids have warmed up to her quickly.

I am learning each day how to better appreciate a little sunshine after the rain.

-ken

Recovery… in the Shadows

74 days since complete TPO resection.

In the shadows, we see great things from Savanna.  She responds like never before to the world around her.  Strength, she is gaining every day.  Finding the blessings in each day are easier as she smiles now when she sees me and then deliberately crawls towards me and wants me to pick her up.  Amidst the unending housekeeping, I see a toddler in the shadows exploring furniture and a house she has never seen on her own.  Instead of seeing only the neighbor’s little girls play, I see mine play.  I see things that scare me when she climbs something on her own the first time.  Through teary eyes, I see the innocent love from her brothers who don’t really know what is going on yet.  I see a toddler nearly 21 months old, functioning emotionally at a typical 6-9 month level.  I see a toddler we are just getting to know.   From what I have read, she is just getting to know us as well.  I see all of this in the shadows of very short moments throughout the day.

Brandon will at anytime, even if she is crying, jump in the swing and start to do his thing to make her laugh. I have to restrain myself at times, as it almost always works out great. She laughed here from her belly, it was a moment to to shut off the faucet, put the dish rag down, and just watch and absorb.
May 2013-6694
The clarity and symmetry in her eyes now is stunning. It was never like that if you look back through her pictures.

May 2013-6684

She now surprises me with what she can do.
She now surprises me with what she can do sometimes.
Austin with Savanna on the swing. She is happy here, but definitely in her own world.

Out in the open, she is in pain.  It is inexplicable and no drug helps.  Most feedings devolve into an act of futility within minutes.   She is in pain.  She veins out like a devoted weightlifter.  She exhibits stridor when upset and is still retracting a little in her tracheal area of her throat even when not upset.  She has failed a swallow study, but we were told “it was mostly normal”.  A recent clinic visit with a Dr. GI planted a new seed in my mind for differential diagnosis:  Candida in her throat below the esophagus.  What you say?  A yeast infection in her throat, really?  Why yes.  And I understand it can persist over long periods of time.  If I play Dr. House on TV and populate my white board with symptoms and probable causes, Candida wins over re-flux handily (especially since we are already treating for re-flux in an effort to affect the situation – Dr. GI didn’t care about that).  This day, like so many others, Savanna seemed ‘okay’ in the clinic at that moment.  Why is that?  It is because that is the way it goes.  I know you were expecting a scientific or smart-a$$ statement, but no, ‘that is the way it goes’ is my answer and I am sticking to it.  As soon as we left, all hell broke loose.  In fairness, treatment of the patient depends a lot on presentation at that moment in time – in most cases.

Oh great, let’s treat the Candida, right?  Wait, treating it without formal diagnosis would be ‘sloppy’ according to Dr. GI.  We have to scope her in the OR under GA to confirm.  But, even though we don’t know if it is re-flux or not, we will treat that right away.  What?  What kind of fuzzy ethical line is this I ask myself?  I my heart, I know if this were Dr. GI’s kiddo suffering, the treatment plan would be different, or at least on a different timeline.  Sometimes, it is what it is.  I have accepted that for Savanna, suffering is just part of her life.  As her caregiver, I work hard to learn how to help her, but sometimes you have to accept that there is some suffering still to be had by all.  In His plan, I think this suffering helps reduce the mediocrity toward life when there are good times.  Without doubt, it has changed the way I see the world in terms of special needs people.  For starters, I see them now, which is in and of itself a big step for many people like me with virtually no background whatsoever.

“Oh don’t worry…” says Dr. GI, “If the situation gets worse, call us.”  And, you will do what, exactly?  Gosh, can it get worse?  For a split second, I forgot.  Yes, it most definitely can get worse.  I count my blessings along with each day she seems to be seizure free.  So for now we wait.  We wait for the day she goes under the cloud of anesthesia and away from us – again.  To a place where helping her as her parent, we have to let her go.  From there, we are actually helpless.  It is a dark feeling.  It feels like you are at the bottom of something where no one understands, where you are unimportant despite great lengths that have been taken to educate yourself, despite the emotion surrounding the sacrificial, endless love and care that is required each day to survive.  I will wait for something miraculous to take place yet again on that day.  I will wait for that moment in the waiting room, where I hope to get good news.  And like past experiences, hope a problem is identified that can be repaired with restorative measures.  I just wait.

Tristan ‘graduated’ pre-school after only 4 weeks of enrollment.  I did this so I could have a little break while Rebecca was travelling.  The lady in the very middle in the white runs the school and could not have been nicer to me.  Then I learned she had a daughter with special needs who has since gone to heaven.  I am not sure how much harder it can be on this earth to watch your child slowly succumb to a rare, horrible syndrome.  Even with what we have been through, I can’t imagine what she had to handle as a parent.

Tristan - 'Graduation' from Crossbridge pre-school, where only a

On a lighter note, Tristan, Brandon, and now Jackson have continued the pirate gold hunting activity started when Grandpa Squiz was here last (thanks….)  Our neighborhood is still being developed which includes a lot of lake digging.  So, we head when the weather is good and the equipment is resting to ‘look for pirate gold’ that might have been uncovered while they were digging.  These are fun times indeed.

In the excavator bucket!

In the excavator bucket!

How many people can say they have been on a D6 dozer...

How many people can say they have been on a D6 dozer…

With friends, exploring the new sections of lake being dug in our neighborhood.

With friends, exploring the new sections of lake being dug in our neighborhood.

What color is my tongue?
It’s summertime!

Having Rebecca working from home has been well, interesting. great!  She traveled away from home the first 6 of 8 weeks (6 consecutive weeks) which was very difficult.  The last day of the last week of this travel marathon, the kids were bound and determined to say up to meet mommy, not scheduled to come home until around 1am.  The last one asleep was Tristan who made it until 11pm.  This was a moment I took to low light photography and got a cute picture with a 30 second exposure.  It came out great with wonderful color and detail.  Austin is passed out face down on the floor, and Tristan and Brandon who are best buds, were inseparable as usual.  Savanna, where else, in the sensory swing.

May 2013-6665

We have wonderful neighbors who help me with the kids.  They are willing to let me nearly kill myself on their boats trying to learn how to wake-board.  (I am forecasting the need for services from adult doctors at Memorial Hermann one day if I keep trying.)  They too have little ones and we are having fun teaching them all how to ski.  Tristan and Brandon have skied now several times and are loving it.

Tristan skiing on a small arm of our lake very close to our house.

Tristan skiing on a small arm of our lake very close to our house.

We have entered a contract with another Au Pair agency to accept an Au Pair, so full-time help is on the way!  Her arrival will be early July and we can’t wait.  There are projects around the house that need attention, things to paint, things to fix, things to change, just things to do.  None of which I can do while spearheading Savanna’s care and keeping the other three kids alive entertained, well fed, and clothed.  Somewhere in the middle of all the therapy, appointments, and ‘entertainment’, there is endless daily cleaning and housework that in spite of the effort, still leaves the house in a somewhat embarrassing state at pretty much all times while I am on duty.  I am sure Rebecca can expound greatly on this issue.

I feel like I am on an island, far away from land, but close enough to see it.  I am walking a fine line, tip-toeing on eggshells, carefully navigating freshly frozen ice on a pond.  I am deliberately trying to starve her just enough to stimulate the desire to eat, but also making sure she is healthy for recovery from major surgery.  Some people might read this and have differing opinions on what we should be doing to help her.  Help her we are though, as she continues to improve.  In retrospect, had Savanna not already have a G-tube placed, this situation might have been resolved a long time ago.  Dehydration would surely have set in within a week or so of being discharged, and she would have been back in the ER.  We might not have been discharged at all looking back.  What can I say?  It is a recovery in the shadows.

-dad