I’m Going with Them Dad. Okay?

Posted on January 19, 2016 by kenlininger

Fireworks. Looking for inspiration I came across some fireworks pictures I snapped last July 4th. This picture shows a typical firework just after the in-air explosion to 3.2 seconds later; revealing the path of each burning ember.

Metaphorically speaking, I see Savanna’s development the last 6 months like the firework picture, several areas of growth exploding independently, creating a wonderful overall effect, but also showing signs of stall as the burning embers drift with the wind – propellant exhausted.

Like the firework picture, I actually see Savanna as she was 6 months ago and how she is now – all at the same time.

I hear her opine on and on about different subjects! To the point I find my self asking her to be quiet sometimes. I hear grammatically proper and phonetically correct sentences. I hear an exploding vocabulary, with nearly unlimited parroting.

Phrases such as ‘fwench fwies’, are quickly being replaced with the correct phrases. Suddenly, her social interaction and behavior looks normal? Her physical ability now allows her to ‘hang with the boys’ for the most part, feeding the positive social interaction.

I praise her advancements since our last outing to the play place, playground, or the stairs that lead to the Speech Therapy facility. I do not praise mediocrity but rather encourage exceptional performance and behavior; both with our boys and Savanna. She responds to that fuzzy but hard line.

I am amazed!

I also still hear the struggle in her language. I hear the difficulty pronouncing complex sounds. I hear echolalia. I see the inappropriate grading of physical gestures towards her brothers. I see the undeniable speed difference with which she processes and reacts to new environmental input.

Like the drift evident in the fireworks picture, I see her coasting for the moment. And when she can’t respond to the fuzzy but hard line like her brothers, well….

I am concerned.

I am both amazed and concerned at the same time.

For the first time, I have observed Savanna realize her challenges with expressive speech. Watching her put up emotional walls and turn inward was profound. My mind raced forward 10 years regarding her emotional health.

Discharged in September from facility-based ABA, she has progressed to a level where she can function in mainstream environments, or so we think. Similarly, she was discharged in November from in-home OT services for the same reasons. These 2 months were like letting go of the bike when you have been running along with your 5-year-old for miles holding them upright…. And suddenly; there they go; on their own. And all the ‘what if’ scenarios start to play out…

Her BCBA at the ABA facility recommended that we start in-home ABA services to surveil her progress. Her developmental pace is what we now monitor. Is she keeping up or does she need help? A neuro-psychological evaluation in the coming years will help us identify specific areas which might need extra attention.

Right now, life with Savanna is such a blessing and joy as she seems to fit right in with her peers.

Well, there are moments of course that are very unpleasant, like when she goes # 2 in her pants. Yeah, that sucks – still. It sucked a lot less when she wore a diaper, but she has mastered #1 and I find she loses that mastery when the diaper goes on or when the routine changes, so now what? We are going on a year of #2 training. She has no desire that I can see to accomplish this task, despite all our incentives. I feel defeated in this area for sure.

She is in fact, only 4 years old. While I see her as a professionally trained child with nearly 2000 hours of formal therapy, most see her as just a 4-year-old little girl with a short haircut and cute sunglasses. She has what? She is missing what? She can’t see what? Really?

Yes, really. That is amazing I know! God be praised!

Savanna follows much more than she leads, which is okay I guess. She does initiate activities Austin enjoys, like building anything Lego, coloring, etc. She will mimic just about anything Austin does. Thankfully, she still sits to go pee pee! But, I won’t be surprised if she decides to stand up like Austin, lol.

She is also great at being mischievous. A hidden talent, no doubt. A short example:

Not long ago, we went to ‘Hot Wobby’, Savanna lingo for ‘Hobby Lobby’. I only needed a picture frame that was already in my mind. They (her and Austin) walked away around the corner and I thought to myself, “they will be okay” as I let them go. I could not find my frame, and then I heard ‘the devious laugh’. I turned the corned and found them with a couple hundred gift cards and envelopes scattered in two distinct piles in the aisle. It almost looked competitive, like who could make the bigger mess! I was too embarrassed to even take a picture.

Savanna was proud of herself and the look on Austin’s face turned from priceless to fear as he realized I was there. He knew he did wrong and immediately covered his butt with his hands, because Yes, I am one of those parents! Savanna still has both frontal lobes but, sometimes I wonder about the function as she didn’t get the ‘wrong’ at all? lol.

Noteworthy is the increased tolerance and patience from her brothers including her twin brother. Not just the expected empathetic response to your sister being hurt, but truly being patient with her knowing she isn’t behaving appropriately. Just when I think they do not ‘get it’, I see the interaction when a friend or classmate comes over who has no awareness whatsoever of Savanna’s challenges.

It is then that I realize the real affect of Savanna on them. Heavy is my heart during these moments of reflection. What will they be burdened with when I am gone from this earth and Savanna needs a lot of help? Their preparation is under way already.

In June we ‘graduated’ a pre-K and 1st grader to Kindergarten and 2nd grade. Savanna regularly proclaims “I will ride the bus Sunday!” (she means some day). She is right.

Early into summer, I thought Swim Lessons would be a good idea! Savanna’s relationship with the water is sinusoidal love-hate. This period was one of hate unfortunately. Challenged by her own behavior, she had difficulty responding during the lessons, despite this cute picture.

Despite all the protest and hassle, Savanna did learn. And, she demonstrated that later in the summer.

Vacation! FL-VA-KY this year. Destin, FL, was our first stop for some time in the white sand with Rebecca’s family. Still enrolled in facility based ABA at this point, Savanna’s day included immersion in all things ‘appropriate social interaction’. She was happy showing off her skills and getting all the positive praise. She loved the beach and the pool, but not the ocean. NOT the ocean. I don’t know why. She didn’t even like us being in the ocean.

She talked constantly during our stay in Destin. Proving she generalized a skill, she learned everyone’s names quickly, 16 other people besides our little family of 6. She initiated a lot of conversation.

But still, she was three. And, so was Austin. This picture during our attempt at a group picture, pretty much says it all – or a lot of it anyway!

Our clown show arrived at Grandpa Ken and GranShe’s in VA house where Savanna once again amazed them with her independence, happiness, and seemingly new-found language. Our boys love their house as it is on the lake with a large piece of mature woods, perfect for adventure and exploration.

Savanna was in a period of love with the water at this point, despite her recent protest at the ocean! Once unthinkable, I now envision her someday riding the inner tube, or whatever, by herself.

A quick stop in KY to see more family. Savanna was such a joy during this trip.

Returning from our trip, we ushered off the other kids to school. While it felt good to put them on the bus, the unrelenting waves of unnecessary financial solicitation began; whereby the school and the PTO ransom the emotions of our children to puppeteer our check-writing hand. I wish they would just ask straight up for money and stop the nonsense. Soon after, the homework followed. You know, the homework that always leaves you wondering what do they do all day at school? (Austin is such a character in this picture!)

We have a lot of Veteran’s in our family and to them, I say Thank You!

We have 4 birthday’s in our house during the fall. This year, Mommy celebrates the big Four O! (I am sure she is glad I added this, lol!) Then Austin and Savanna turned 4! Their journey: amazing! God’s plan is at work. Finally, Brandon turned 6. He is the middle child, enough said. HaHa! Austin is a little poser!

This picture of Brandon’s SpiderMan cake is a great one of Savanna. Photographing her is often challenging. Her eye contact is far less than her brothers – it is a constant battle. Just about every photo moment takes about 100 pictures to get a decent one, and she often is still looking away. Not today! (Yes, Daddy made the cake – that’s right!)

Despite the cute rainbow dress in this picture, Tom Boy best describes Savanna’s typical behavior. She usually wants to wear Austin’s underwear, Austin’s socks, Austin’s pants, Austin’s shirts, and for sure Austin’s Jackets. Her latest wish is Austin’s shoes, (that are like 4-5 sizes too big.)

These pictures are the best. Taken on September 20th, their birthday, Austin is her Angel for sure. Yes, Savanna is able to interact with him on his level, but he is patient and tolerant of her as she learns.

Girl toys? Not so much.

Swords. Power Rangers. Ninja simulation. Lego blocks. Yes!

Girl pajamas, sometimes. But, only over top of the boy ones, lol.

Here she is just wanting to do what the boys are doing, shortly before Halloween, field testing the Halloween gear of course. (Almost none of this gear actually survived to see Halloween.)

Then Halloween arrives. Sigh. Oh yes, Daddy’s favorite Holiday – not! A day of memorial has morphed into extreme candy entitlement. An elementary study of the foundation on which we celebrate some of our ‘Holidays’ reveals significant migration from the original intention. We participated anyway because it is in fact Rebecca’s favorite Holiday, second only to Christmas.

Here is a cute video showing Austin taking his daily medicine from Savanna. You can see in the video that Savanna hit Austin hard with the plastic sword on accident. She displayed zero empathy and zero outward understanding she made a mistake whatsoever. This kind of behavior is still a bit of a problem.

And then Brandon… He decided to start a game of ‘Hit the Butt’. Yes, I know, judge me. I have let it go because Savanna loves it so much. Here is a little snippet of what that is like on the platform swing.

By the time October 31st actually arrived, most of our costumes showed significant signs of wear and (ab)use, as the daily play routine 3 weeks prior included mandatory use of all-things-Halloween. Luckily this event happens at night. Savanna did well, still quite slow, but she participated far more than the previous years.

Thanksgiving was great this year as we hosted family from CA. By now, Savanna was really warming up to Mommy. She has really been a stinker in that regard, being a ‘Daddy’s girl’ to a fault. (it was an ABA goal…to address Mommy) But, mommy handled it well. And finally, the pendulum changed direction and we started hearing her ask Mommy to “come help”, “come see”, “take me with you”, “No! I want Mommy to brush my teeth, wash my hair, etc…”

Here she is in a video compilation performing in a ‘Sing-A-Long’ for Thanksgiving at her school. A familiar daytime place presents 3 opportunities for nasty falls in the evening as her visual field cut gets the better of her at night. Knees scraped up, she begins to derail emotionally as I usher her into the staging area. Only Mom’s in there (Mom’s I don’t know), I feel the eyes of judgement from all around. For a second, I contemplate giving up and giving in. Then, I get right in her face and we work it out with tactical technique and surgical conversation I re-engage Savanna in the activity. I promptly leave without looking back while Savanna cries, knowing she will be okay. The onlookers thought I was a complete a-hole Dad for sure, but Savanna responds. And respond she did! Tristan, 7-years-old, captured these video snippets.

Recently we were in KY for Christmas and were eating lunch at Aunt Kathy’s house. Savanna wanted Mommy to come see something. Mommy assured Savanna that she would ‘come see’ once done eating.

Savanna could not wait. She came to the table, security blanket in hand (finger in the loop formed by the tag), and grabbed Mommy’s hand proclaiming “Mommy! You are done. Come with me!”

Everyone got a good laugh, and was impressed at some level.

November was epilepsy awareness month, with a special week in December for Infantile Spasms. It passed quickly for me this year. Watching my Facebook news feed turn purple, I failed to address it out loud this year in any meaningful way.

I often struggle with Savanna’s amazing progress given the prognosis that comes with such a devastating neurological condition. Why?

I could leave that life behind and operate under the assumption she is healed or cured. But science doesn’t see Savanna’s situation as healed or cured; the same science that provided the course of treatment that helped her.

It may just be semantics to some, but I see Savanna on a path to resolution, not healed or cured or even on such a path. My wife recently told me 99% of people would think I am wrong; that stopping the seizures is equivalent to cured or healed in their minds.

Cuts and broken bones heal. Healing involves restoration of health, like ‘as it was before without loss’. Removing brain cortex to gain seizure control is not a healing process in the true sense of the word, but one of resolution. And no one truly understands the condition of the remaining cortex, as the underlying etiology is unknown to a large extent.

One could argue she is past the age of her West Syndrome, thus classifying this as resolved. The cold truth is that Savanna is still very early in her journey with epilepsy. Relief of her seizure burden by removing the offending tissue only guarantees seizures won’t come from that area of the brain ever again, nothing more, nothing less. Her risk of experiencing more seizures is elevated.

Savanna remains seizure free, nearly 2 years and 9 months. She also remains medication free, more than 2 years now! (Still an Engel/ILAE 1a surgical outcome for sure.)

I will always watch for seizures. I can’t even look at another baby or child the same way, let alone Savanna. The innocence is long lost, stolen in the dark of night. In broad daylight I work each day to regain a little bit of security. I do this without anger toward God. I do not believe he wanted epilepsy to be part of her life.

I believe God’s plan is for each of us to find the good in life. I consciously choose not to look away from Savanna’s past partly because it fuels my passion in actively helping others navigate once finding themselves on a similar and unlikely journey as a parent to a child like Savanna.

Segway to Dance Party! This is a girl who had global discontinuities on her EEG (proverbial EEG ‘flat line’), global hypsarrhythmia, and really nothing at all normal happening in her brain at 12 weeks old. Look at her today!

As long as we are able, we will make the pilgrimage back to KY and VA to visit family over Christmas. At Grandpa Ken’s and GranShe’s house, we went on a ‘hiking adventure’ in the woods, well kind of anyway. I encourage Savanna to go with her brothers.

Then, Savanna paused, turned towards me and proclaimed:

“I am going with them Dad. Okay?”

A Message from Mom: Dear Dr. Von Allmen…

Posted on January 15, 2014 by kenlininger

First a little context….

We set out on our trip to Kentucky and Virginia for Christmas early, so Rebecca could squeeze in a work trip to Kettering, OH – which meant we would be compensated for traveling. A day after we arrived in Louisville, she left on her business trip. Scheduled to return on the 18th, she called me to tell me she leaving at 12:30 pm.

I got a call around 5:30 pm from her saying she was now just leaving. I was frustrated. I was sick. Savanna was sick. Tristan was sick. It was becoming unpleasant as Savanna was a complete handful. We all lived through it-

A few weeks later back home in the routine, she sends me an email with a response to a letter she wrote to Savanna’s doctor. The timestamp was 3:28 pm on the 18th of December. But she told me at 12:30 she was on the road? Something must have happened in Kettering that kept her there but also allowed her the time to compose such a beautiful letter. She never mentioned to me that she sent a letter. I sent one too, but not nearly as articulate (sorry GVA!) Rebecca rarely has time to contribute to the blog directly and this wonderful piece deserves sharing.

It captures her thoughts and feelings at this time of the year. I completely agree with her expressed feelings about Savanna’s treatment, the regard for her doctor, and the wish to help others. I might have a wider field of view with regard to ‘how she is doing’ than Rebecca, but that is just me. More on this in a future post…

…………………….

Dear Dr. Von Allmen,

I want to thank you with all my heart for the amazing care you have given Savanna (as well as me & Ken) through our journey. When her spasms began, I was afraid to even dream that she might be one of the rare “lucky ones” who could be spared from a lifetime of seizures & the many associated challenges through a miracle surgery. I prayed like I’ve never prayed in my life for God to guide us and give us the strength and energy we needed to survive and care for her. I know in my soul that he led us to you. The confluence of factors that had to come together for us to move to Houston, for Savanna to get the right diagnosis and treatment as quickly and effectively as she did could only have come by His hand. Why she (we) were found worthy, I will never know.

I have so much admiration and respect for you, as a mother, as a woman, as a doctor, and as a bold entrepreneur in your field. You saved Savanna’s life, her quality of life, and in doing so, mine as well.

She’s doing amazing. We traveled to Louisville, KY for Christmas, and it’s pleasantly reassuring to see her go through the common childhood illnesses of Strep throat, ear infections, and the like.

She’s happy. She’s healthy. She teases us by walking and looking back over her shoulder to make sure we are watching / following her. She dances and shakes her booty on request. She waves and blows kisses. She plays cars with Austin, and wrestles with Brandon. She giggles when thrown in the air or on the couch. She runs and giggles from “I’m gonna get you” when I chase her and eventually give her zerberts on her belly. She’s putting things into containers & taking them out. She’s starting to show an interest in books with a few torn pages as casualties. She’s social and likes to explore and meet new people. She snuggles. She climbs up and down the stairs. She’s starting to make more sounds in addition to “mama & baba”. She’s starting to use more inflection, and saying pa pa, da da, … She’s starting to do puzzles. She’s graduated from AFOs to less intrusive orthotics. Ken feels good enough about her progress that he is talking about possibly going back to work next year, which will allow me to possibly cut back to 20 hours / week, down from way too many hours.

None of this would have happened without you, your dedication, your training, and your willingness to aggressively treat her.

Savanna was first diagnosed on 12/19/11. We spent that Christmas Eve & most of Christmas Day in the hospital before Ken broke her out. It was hard to hear “Merry Christmas” that year. My dad wished us a “Blessed Christmas”, and we found that to be more appropriate.

If you have anyone going through a similar situation that needs someone to speak with, especially at Christmas time, please provide them with my phone number.

Have a Wonderful, Merry, and Blessed Christmas with your precious family. If you ever, ever wonder between long hours or thankless tasks, if what you’re doing is worth it, know this, it absolutely is, and I’m so grateful to you, Dr. Tandon, and your entire team for what you’ve done for us.

Rebecca

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

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

Milestones: Savanna progresses while Daddy falls over the hill…

Posted on May 2, 2013 by kenlininger

32 long days since Savanna’s elective multilobar resection. What can I report? Well, it has been really difficult, but I think she may have finally turned a corner with all the crying and pain. And, it probably had more to do with two of four incisor teeth finally breaking through the gum line. One thing I have learned is that life’s normal challenges for young children are just that much harder for Savanna. Unfortunately, she doesn’t know any other way. Just before the grandparents left, we were able to get a few good pictures where she wasn’t sleeping and wasn’t crying.

Grandma Lou and Savanna

Mama Barbara and Savanna

I have come to realize that these periods are core training for parenting special needs kids. It is a bit like that darn underwater board in Super Mario Bro’s Wii, (…need some special thumb exercises or something). It is really difficult, but necessary to master (or at least pass) in order to progress through the game. With faith in God, living through these periods and not losing your sanity is actually possible. And, in turn, it helps me see the happy times more clearly and not to be so callus in social situations. Otherwise, I would probably go bonkers with typical conversation with people around me at any given time. We did document the good times when they happened and here are some pictures of the kids doing fun kid things. Tristan and Brandon are two pees in a pod and they do everything together.

Tristan and Brandon being silly at lunch.

Tristan in 'Time Out', Austin thought it was cool and wanted to join in.

Tristan in ‘Time Out’. Then Austin thought it was cool and wanted to join in. I couldn’t help but laugh, and that didn’t help the ‘time out’ situation, as Tristan knew what was going on – head down and laughing at me laughing at the them…. lol.

Play time after a bath with twin brother. Austin and Savanna.

Back yard fun with a planter box on a Saturday

Savanna in a moment of happiness, with Mommy.

Pre-school and then playing at the splash pad all afternoon is tiring. This is 6:15 at night, and Brandon falls asleep at the table.

Warning: yucky image forthcoming. One morning Savanna was having a particularly difficult time. She cried and fussed for about 5 hours straight starting at about 5 am. At 10 am, I decided to just buckler her into a car seat on the sensory platform swing I built and let her swing. She was worn out from all the fighting. She got quiet. I left her to deal with some laundry. I was at the putting away stage with about 4 loads, so I grabbed what I could and walked back to put it away. The smell hit me like a wall. It was obvious what had happened and who did it. She wasn’t just quiet but laughing. I already knew I had a big mess to clean up, but I was still amazed at what I saw when I turned the swing around to see her. Savanna was happy and laughing and I realized this was worthy of a photo. It pretty much speaks for itself.

Savanna happy about poop in swing

As Savanna navigates this unpredictable sea of difficulty, Daddy turned 40 this month. Yes, I feel older. No, I can longer just decide to do the P90-X Plyometrics workout at will and expect to make it through even half of the routine. No longer can I just decide to go run a few miles, with or without the kids in the stroller. Yes, I have a lot more grey hair – but no need for ‘Just for Men’ yet. Yes, I have another hernia in need of surgical repair. But, there is good news: I don’t need the little blue pills yet! The kids and mommy felt it necessary to make a cake and actually put 40 candles on it. Nice.

During all of this discomfort, Savanna has made strides in development. This has a somewhat calming effect for me, as I know this would not be happening if seizure activity was occurring in the manner it was prior to surgery. Right now, we have to stay focused on that fact. We have obtained the compression vest to help her with the awareness of herself as she moves around. It is like a custom wet suit that is adjustable in terms of tightness of fit. Savanna now has custom AFO’s (ankle-foot orthotic) that helps prevent hyper-extension of her knees when she stands. She is much more responsive when she sees you in the room and when you call her name. This is really a feel-good reaction from Savanna that both mommy and daddy needed to see finally after this surgery. It could not feel better when while not looking at you, you call her name, she turns to locate you, makes eye contact, smiles, and proceeds to crawls toward you and going to tall kneeling with her arms out and up to hold you. For some reason, I never thought that was actually going to happen with her. Then comes the inconsolable crying and fussing. Her movements and behavior when you hold her sometimes is like trying to hold a 25 lb mealworm. She is just everywhere, every which way, and really low tone at times.

Savanna decked out with a compression vest, AFO’s, and a medical walker.

She is crawling all over the house now. This is amazing to see, and is causing me to have to put things up off the floor in area’s she never bothered to explore or care about. She has climbed 2 steps unassisted (…and then… fell backward as I knew she would, so I caught her before she landed on her head. “Good daddy, good!” as Brandon says.)

She is standing now on her own with the help of furniture – meaning she can transition from sitting to standing on her own. This is a milestone for sure. I have attached a video showing her standing on her own. For me it was breathtaking while also very rewarding. This particular clip was about 5 am, and I heard her active in her room. Austin (her twin) was still asleep, so I flipped the light on to capture this sequence. Because of her visual field cut, I don’t think she saw me until I said something.

Going from laying down to sitting up, to standing up, all have their mechanics of motion. And those mechanics are broken down in movements or elements. The training includes correctly positioning the correct limb, at the correct time, with proper weight transfer, etc., etc. Learning to dance is similar when you really break down the movements. We have to teach Savanna each element and how to put together the movements to accomplish the overall goal, sitting up, standing up, walking, etc. It is amazing how normal kids just do it naturally and without any trained guidance. It is a good outward expression of how Savanna’s brain is different from a normal brain. Learning other skills require a similar approach.

Speaking of normal kids, we have been able to witness some normal twin activity that was never really seen in our house in the past. It has been great to witness even if it only lasts a minute or two. Austin sometimes mimics Savanna’s bunny hop crawl, and she gets the biggest charge out of that. Wish I had some video of one of those moments to share, but it starts and stops very abruptly and I just haven’t been quick enough on the draw to record it yet. Here are a couple of pictures of a rare during the day bath time for just the twins while the big boys were at school.

Austin, close up…

In the tub fun, without the big kids. A rare moment worthy of a photograph for memory.

She really likes tilting her head toward the resected side, and actually putting it on toys and such. She continues to do this a lot and we are not sure how to interpret this activity, especially when she is usually so happy when she does it. She also is increasingly insistent on banging her head against walls, mirrors, floors, table legs, etc. She does it repetitively, so she will crawl over to a door with a low glass panel, move to tall kneeling, and just start bumping her head against the window. It progresses to the point I feel the need to intervene. I think this may be sensory related, but are not sure. A protective helmet is on order as she is getting really aggressive with this activity.

Since her second surgery, Savanna gets pleasure from putting her head/ear on whatever is around her.

Unfortunately, Savanna is still battling something in her throat – or at least I think she is anyway. She makes funny sounds when she is sleeping, kind of whistle-like. When she gets really worked up, she has significant retraction in her throat. Her swallow sound is really labored and noisy. It is almost like when you have a really sore throat, and all seems well, then you swallow – ouch. A swallow function study recently indicated Savanna is in fact aspirating thin liquids, what a surprise. I had already ordered the infusion pump as a last resort option, and had been bolus feeding her through the G-Tube since surgery because my daddy instinct indicated she was having problems. Plus she refused to suck after the second surgery and that to date has not changed. So bottle feeding is over and done with for her. She has a follow-up scheduled with her ENT soon that will shed light on the situation I hope.

She is otherwise very healthy and just generally really unhappy about half of her awake time. It is somewhat concerning for us as parents, and we are really hoping her situation is just circumstantial regarding her teeth. We have already asked for guidance once from her doctors. Thus far, I think this just may be the way it is for some time yet. I noticed during the swallow function study that her 2 year molars are right there too. (This is a study done with x-ray ‘always on’, so there is plenty of time to see a lot of things in her head.) I don’t see bulges on her gum in those areas, but the teeth are right there. So, this could be a long six months or so. God watch over her.

-dad

Savanna's Journey

Infantile Spasms. Partial Epilepsy. Surgical Treatment. ASD.

Tag Archives: parenting special needs kids