Three Years Later

Posted on December 10, 2014 by kenlininger

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.

I 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.

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.

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…)

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.

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!

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!

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.

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.

She 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.

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

6 months seizure free…

Posted on October 1, 2013 by kenlininger

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, father, and friend today.

What has changed since the last post at 4 months?

Savanna 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.

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!

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.

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.

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.

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!

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.

Sunshine After the Rain

Posted on July 17, 2013 by kenlininger

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.

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].

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.

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

Posted on June 13, 2013 by kenlininger

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.

: The clarity and symmetry in her eyes now is stunning. It was never like that if you look back through her pictures.

: 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.

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!

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.

: 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.

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.

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

Each Day there is a Climb and a Summit.

Posted on May 23, 2013 by kenlininger

Savanna is 53 days post op from a TPO resection.

Many people have commented on how well they think Savanna is doing, and how whenever they see her she looks so good, happy, and healthy. They are right. As her primary caregiver, I have different perception of the situation. Each day she experiences a sinusoidal track of mood and behavior. But this is not your normal roller coaster of emotions. As a result, our house has become a compound for Savanna. Not just a home base, but a safe zone where I am comfortable at all levels. Rebecca feels differently I am sure, as she is such a free spirit even after all we have been through with Savanna.

I am a planner at heart. I thrive on knowing the what, where, when, and who about every outing. Free spirited, unplanned activities outside the compound are few and far between for me when Savanna is in tow. Instead, each day is backwardly planned, managed for maximum pleasantness for Savanna when we leave the compound for a scheduled outing. Some would say this is a character flaw on my part. At some level I agree, and am trying to live more freely now that her seizures seem to be controlled. That doesn’t stop the overwhelming desire to make sure I have Diastat®, Ativan®, water, syringes, extra clothes, extra food, extension sets, sensory toys, etc, etc, etc. I pack light (relative to previous years), but I pack strategic items only with survival in mind if faced with a crisis with Savanna.

Even something as simple as a play-date with the mom’s group in our neighborhood is carefully managed. I can ill-afford to have Savanna in complete breakdown mode when we leave the compound. Austin is too mobile and vulnerable to a big fall on most of the playgrounds we attend. And, trying to hold Savanna when she is having a bad day is like trying to hold a 26lb mealworm on steroids. (For those of you fish, you get the idea.) And, even if it is ‘just a play date’, it is the summit of my day. It is a personal goal just to be able to attend, aside from my daily goals for Savanna’s progress. Once upon a time, I like to think I had significant impacts on not only companies I worked for, but their customers. It seemed very important at that time. Now, my primary job is to keep Savanna alive and make sure she can thrive. The contrast from then to now in my daily activity is stark. There was a time for me though, like many reading this, I took my kids for granted. Work was the most important daily task due to not only the sense of loyalty to the company and those I worked with, but also our family’s financial well being. My, what I have learned in my 40 years on this planet. Work is still important. As all parents of special needs kids know, having access to good health insurance is key in surviving. But the roles in our family have become more defined as the dependence on others to raise our kids has lessened substantially. It has been a difficult adjustment, and still a point of contention at times in our house.

Rebecca has been travelling almost every week in May and it has been a quite an adjustment. I have had to step back at times and make decisions about what has to get done during the day. Some days, the list is very fluid as Savanna is on a new path now and needs a new diet of sensory input. Learning how to feed her this input so she can thrive takes time, some days more than others. I am hoping some of the unhappiness is her expressing herself and needing additional and different kinds of input. The sensory swing I built many months ago has finally emerged as a worthy project. She can be completely inconsolable by any means and you put her in that swing and give her a big push and she stops crying and starts laughing. In many ways, we are starting over with her from a parenting standpoint.

I must give a shout out too, to Tristan, our 5 year old. He has been a great helper and guardian of Savanna when I am not looking. Brandon helps too, but he is 3 and his level of awareness is on and off, depending on what mischief he is currently undertaking. And, these 4 kiddos have really become closer in the last few weeks. I have tried to make it a point to do something with each one of them every day, though I spend a lot of time working with Savanna.

Savanna has a lot of therapy in the compound too, and those days too are carefully managed the same manner. This allows maximum benefit from the therapy. If Savanna is really upset or asleep, it can nullify the therapy visit. When the therapist is an hour late, it can really void the effort as an hour awake for Savanna is a long time. I have come to realize right now that her wake cycle is about 4 hours. The first hour now she seems happy, and it goes downhill from there. The kind of input she receives makes a difference and I am learning how to help her help herself.

When I have to leave for an extended period of time, I take the nebulizer in the car and run it while on our way to wherever we are going. If she is sleeping it is easy. If not, I probably look like a drunk driver. The extra inhaled steroids and ipratropium bromide really help with her stridor and wheezing and general upper airway congestion. There is something still going on in her throat. I am not sure, nor is the ENT. Savanna has stopped eating again almost entirely. The past 7 days, I managed only about 1 container of yogurt, and 1 container of baby food – that is it. So, she back on tube feeding which is really demoralizing. No one is really helping us with this situation, so I feel like I am on my own in figuring out what to do. She will put anything in her mouth and chew it, but won’t swallow it for nothing.

I have noticed now too that she is spitting up randomly throughout the day and smells like vomit a lot. She sometimes stops playing and starts to make that sound like she is going to vomit, but doesn’t. Not sure what to think. Doctors don’t think she is ‘hydro’ as they call it, short for developing hydrocephalus. But, as a parent, I just think something is not quite right with her, pardon the pun. I started her on Zantac to see it helps with the reflux.

In reflection, I have looked at my time spent with the kids lately and realize it is about a 50-50 split. 50% with Savanna and 50% with the other three total. Unfair for the older ones, but I sure hope one day they understand and can forgive me.

I couldn’t get this posted in time for Mother’s Day, but for the mom’s out there this is for you. You can tell something is bothering her, but it is indeed a great little clip.

For Savanna right now, everyday is climb. It is a challenge. God is showing us the way, one day at a time knowing we can’t handle much more than that.

Take care,

Ken

Savanna's Journey

Infantile Spasms. Partial Epilepsy. Surgical Treatment. ASD.

Category Archives: Sensory Diet