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

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.

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

Posted on August 16, 2013 by kenlininger

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

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

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

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

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

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

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

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

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

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

I encourage you all to read her post.

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

-ken

Sunshine After the Rain

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

Our baby is home….

Posted on April 8, 2013 by kenlininger

Savanna was discharged early Friday morning and we made it home by lunch time. It was so nice to be home, feeling like we were back in the driver’s seat again with her care. Savanna is doing better, but still has a long way to go in terms of recovery. She is in a lot of pain, and the best we have to manage the situation is ibuprofen and Tylenol.

The past few days have been rough trying to manage her pain. It comes and goes. We seem to get good moments all of a sudden, and then as quickly as it became good, it deteriorates into crying and fussiness. She has absolutely no interest in taking a bottle, so we are back to bolus feeds only (through her feeding tube). This is tricky when she is just agitated beyond consolation, and squirming like you would not believe.

I decided to make some adjustments to her medication to see if we could level out her mood without too much sedation. I split her onfi back to TID (tri-daily) versus morning/bedtime only. And I went ahead and started scheduling .5mg of ativan, TID. This has helped tremendously. She is much happier and playful, with a lot less ibuprofen. Once we get completely off the dexamethasone (steroid for her stridor), that will help this situation too.

She used to crawl by doing a bunny hop, versus alternating opposite leg/arm movements and now she is crawling like a normal baby. Albeit not much, but when you see it, it takes your breath away at first.

She is eating, like a horse. She is chewing well. Against normal intuition as a parent, dicing food into incredibly small pieces enables babies to simply swallow food versus chewing. One piece just the wrong way and she chokes or her gag reflex kicks in full force. So, the O/T (occupational therapist) we have recommended giving her larger pieces, so she would not naturally want to swallow the food, but rather naturally realize she has to chew it first. Even if she doesn’t swallow it at first, that’s okay, she is getting over the aversion to having food in her mouth. This has been a long process with Savanna. A process that honestly, we almost didn’t even notice with our other kids – that is how different they are from a developmental standpoint. It is all good.

One step at a time.

These guys are three pees in a pod. They are the best of brothers, and worst of enemies when it is time for ‘warfare’ – aka ‘playing wrestle’.

Tristan, Brandon and Austin are such good helpers. They love to do things for Savanna to help us. Most of the time, it is a good help. Sometimes, like when Brandon wants to spin Savanna on the sensory swing, things get a little out of control. I picture in my mind puke spraying out from Savanna splattering the walls all around her as she spins wildly…. and then… well, I slow down the swing of course. We have yet to see the puke, but I have to admit, she likes to spin.

They just crack me up with their antics and how Tristan (the oldest) can interact so well with Austin, (Savanna’s twin and the youngest). He is so protective and makes sure Brandon does not hit him too hard, or ‘wrestle’ him too hard. They drive me to my wits end, especially when Savanna is having a really difficult time. Then they turn right around and do things that are so touching and so thoughtful.

Sometimes, I have caught myself making parenting mistakes with Tristan (oops! did I say that out loud?) Yes. When my patience is the thinnest, I act my least thoughtful. I am so focused on something going on with Savanna, that I have said things in a voice that was not called for, but was heard. These situations are difficult.

Like seeing a picture you shouldn’t see…you can’t ‘unsee’ it. Once I hurt his feelings, it can take a long time for him to get over it no matter what I do or say.

In the beginning, he (Tristan) would ‘forgive’ (more like forget) pretty quickly, but not now. He is older and smarter. His feelings are genuinely hurt, and most times it goes into the next day.

I am learning as a parent and person in this situation. It is still a work in progress, but this ‘stay-at-home’ situation is far more difficult than I thought it would be when I signed up for it. With that, of course, goes the reward far beyond what I could ever achieve in any company, at any level.

Seeing Savanna learn and progress, knowing that I am big part of that effort, just can’t be explained in words. There are not words that I can put together to characterize the emotions involved, especially since this last surgery.

So, overall, Savanna is progressing and doing well. We are really anxious for the next few months to see what happens. We continue to learn as a family what it takes to care for someone like Savanna. More challenges are forthcoming. Just as I have said before, God is preparing us for the future with the situations of today.

A special thanks goes out to Grandpa Squiz, Grandma Lou, Mama Barbara, and McKenzie and Eric for being there when we really needed help. They allowed us to devote 100% of our time to Savanna during the operation and recovery period in the hospital. Their help was a blessing.

Breathe Eat Poop

Posted on April 4, 2013 by kenlininger

Savanna is three days post-op since her second resection for epilepsy. It is too early to tell about her seizure activity, but we see activity that is very concerning from our perspective. We have been told to give it another 3-4 weeks before sounding the alarm.

Savanna is moving around now, and her demeanor is dominated by discomfort and irritation versus acute pain and rage. This is good.

Still in the hospital, here we sit. Like waiting in the in the airport terminal and the boarding status just keeps getting delayed. Then delayed again. Then delayed again. Ugh! The reasons to continue to keep Savanna in the hospital seem convoluted and mired in bureaucracy. We know our daughter. We understand their genuine concern. But life in the PICU for someone like Savanna (and her family) is corrosive. She is ready to go play, roll around, and be a slightly-delayed toddler. The PICU was supposed to be a pitstop for her for the first 12 hours and then she was to be moved on to a more outpatient facility for monitoring and released 12-24 hours later. What a disaster ensued when we were admitted.

The unexpected respiratory situation confined Savanna to the PICU for 3 days, tipping the balance of the our emotions resulting in a more combative relationship with the staff than one that needed to be harmonious. She was having problems I admit, but looking back, the initial 12 hours of care should have been in the PICU and then Savanna should have been moved to the general floor for care. Maybe some of the nurses/doctors out there who follow this blog can elaborate on what I am saying. Or, maybe I am off base too, and by all means let me have it. Comments are not moderated. But, the PICU staff is used to seeing a certain type of clientele. Being the #1 trauma facility in the region, most patients here are completely different than Savanna (and so are the parents). By day 2 in the PICU, we had scuffled with 3 doctors and 2 nurses. Looking back, I am not sure why it took 2 whole days to get in that much trouble – it could have been accomplished in less time.

The doctor overall in charge (the neurosurgeon) had been called twice in the middle of the night during the first two days too. These unfortunate actions create an environment of ‘us against them’. The heat from the friction generated at times is tremendous. And the sad part is that it didn’t have to be that way. The thought that any one person knows 100% of what a baby like Savanna needs is naive. I say that without callus and arrogance, but rather a humble realization that the above statement includes me (the parent) too. Near the end our crime and punishment in the PICU, I asked the neurosurgeon, “What is required for Savanna to be discharged?” He replied simply “Breathe, Eat, Poop.” He elaborated, but I thought it was a great title for a blog post.

I was ready to take Savanna home now, but I also knew a brief stay in the EMU was more or less required. I tried to wiggle out of it, but the sentence was handed down and time served was not enough punishment. Savanna’s journey continued in the EMU. Luckily, the EMU is like ‘Celebrity Hospital for the Rich and Famous’ when you are there for observation without EEG equipment installed. It can be a desolate place too with little to no activity at night – very unlike the PICU. What is odd though, is just when you think it is safe to pick you nose, you realize you are being watched through the video system. You are reminded by the sound of the discretely placed camera panning and zooming under remote control of the EMU nurses. Haha.

Breathe.

No it is not a call for us as parents to take a deep breath, as though the person holding us underwater decided to let go and allow us to surface. Savanna has to maintain Oxygen saturation level of at least 90% on her own. Savanna is still struggling somewhat with stridor, which is due to the swelling in her upper airway. This is a potential result of being intubated for nearly 12 hours. It is not permanent, and will take some time to dissipate. It has to be remedied or markedly improved for discharge. As of now, the ENT doctor and neurosurgeon are happy with how she is breathing and feel this is not holding her back from moving forward. We checked this box.

Eat.

So, with her right vocal chord not closing all the way, there exists significant risk of aspiration if she were to spit up or vomit. It presents a delicate situation with respect to feeding her given the nausea from the pain medications and anesthesia. If she is enraged and hyperactive due to pain, she could aspirate while feeding. If she is sedated too much, she could aspirate while feeding. Dilemma. The neurosurgeon does not want her sedated post-operative as it could mask presentation and symptoms of complications. But, if she can’t be safe in a crib that looks more like a cage more than a place to sleep, what is the point. His answer is just to try to console her and redirect her pain with magic. We need her to be manageable and not in so much pain. We have four children, I can’t just sit with her for hours at time and try to keep her from being in pain with a little tylenol. There should be some common ground here, and I feel like I am being fought tooth and nail about keeping my daughter healthy while not in a lot of discomfort. And, the weird thing as this was not the case at all after the first surgery. Maybe I am missing something as ‘just the parent’. I don’t feel like an irresponsible parent, though there is some innuendo in the conversations with the different doctors. I have to say it is not appreciated after all we have been through with Savanna.

How does this rant apply to feeding? Okay, so if she really is in pain, it is really difficult to feed her. Bolus feeding is difficult to impossible as well. She has a G-tube, why can’t we just use that you might ask? Savanna does have a peg style g-tube, but not a fundo. So she can still eat normally as the stomach doesn’t have a ‘reverse flow’ limiter – if you will. So even bolus feeds are in question now, which I think is reaching too far in maintain Savanna’s admission. Even during Savanna’s most difficult times, sedated far more than now, she never had a problem with reflux with bolus feeds. But my historical experience as a parent is being ignored for the most part. I know why, but it is still frustrating, especially when I am right.

So, I still have a speech therapist consult scheduled tomorrow to prove I can feed my child safely. Amazing. An empty box that I have to get checked.

Poop.

I wore my lucky ‘poop’ shirt to the hospital and Savanna had an extra dose of miralax this morning. This box is checked, a couple of times over I might add.

Breathe, eat, poop. Breathe, eat, poop. Kind of sounds like a meditation phrase. Let’s go Savanna, find your happy place!

-dad

A Day to Give Thanks, to God.

Posted on November 22, 2012 by kenlininger

An update on Savanna’s situation.

She is 4 weeks post-operative, and she is well. We have started to titrate down some of her medications, but she is still on basically the same panel of medications that she was prior to the operation. This is keeping her quite sedated. We are starting to reduce the Onfi first, and see how she responds. Despite the level of sedation, we are happy to report significant changes. The biggest change we have seen is the engagement in her environment. She seems to see her world differently now than she did prior to the surgery. I looked at her over the crib rail one day and she smiled at me without any stimulation or sounds from me. To most of you that may sound silly or trivial to bring up, but for me personally, it was profound. She had never done that before and more importantly, it was a sign that at some level, her brain is working correctly.

She has periods where she tolerates sitting up in a bumbo seat or bouncer or something similar. It is really rewarding to see that type of progress. We still harbor a guarded optimism for her immediate outlook as we know some of the facts. We know that the Sabril could be helping to suppress the Infantile Spasms. Should we lower that dosage and the Spasms return, it would be another fork in the road of her journey to put it nicely. Also we know that if Savanna would not have struggled as much as she did during the surgery, the surgical team would have expanded the resection. While not trying to be an eternal pessimist, it is important that we have some emotional preparation for what the future may hold. Another surgery is quite probable, and a life-long battle with seizures is also quite possible.

Unfortunately, we are still seeing abnormal activity at times. Just last night, she was having a really difficult time sleeping, and I witness about 6 hours of what I would consider a seizure-filled period. I am not positive that what I saw was seizures, but it would appear she has some partial activity still in the background, and it occasionally spikes enough to cause complex or clinical indications. I am certain that a VTM/LTM is in her near future to diagnose what we are witnessing. She has become quite cross-eyed lately and it is asymmetric in nature. What is weird is that the opposite eye is effected than prior to the operation.

We are told she may be experiencing many circumstantial situations as she develops a new baseline. In the mix too is that she is growing, and with infants, things can change fast as we have learned. So, it may be possible she doesn’t reach a baseline for quite some time. We have scheduled clinic visits to see the doctors in the neurosurgery, neurology, ophthalmology, and genetics departments next week. We will send our blood samples to a couple of different labs to sequence her exome and our genome. We are starting therapy again for motor skills, speech, and cognition.

I have included some pictures here that are from the last couple of weeks. She truly is an angel and while we live the myth of Thanksgiving nowadays, we are very thankful this year for what God has given our family. The true story of Thanksgiving has long since been white-washed and papered over with liberal textbooks. It is a day that requires some inward thought about the real story, our past, and the future of our country.

For those of you who might want a closer look at what she underwent 4 weeks ago, there is a hidden link on our website that shows a few pictures from the surgery. [taken down, as of 2-2013] I am not posting the link, to the pictures, just to the website. The link is the homepage picture. It is mobile friendly. Warning: they are graphic.

www.kenandrebecca.com

Have a great Holiday this weekend, and hope this email finds you and your family well.

Mom and Dad

(Ken and Rebecca)

Savanna's Journey

Infantile Spasms. Partial Epilepsy. Surgical Treatment. ASD.

Tag Archives: epilepsy surgery recovery