I intend to share stories from people affected directly or indirectly from epilepsy. If you would like to share your story of how epilepsy touched you or your family, please contact me at ken lininger @ gmail com. (no spaces in the name)
Many of you know, we did battle IS in the beginning. Savanna exhibited classic signs of Focal Cortical Dysplasia. That is, intractable simple/complex partial seizures even though successfully controlling the IS.
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.
Our hospital (Memorial Hermann) here in Houston is marketing their MEG lab capability, and wanted to use our story as a ‘compelling patient story’. ABC13 decided to air the story. Some misinformation aside, the underlying emotion and theme are true to form.
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.
4 months since complete TPO resection. No seizures that we know about.
This is great news. 6 months is the industry bellwether. Seizure freedom 6 months after a surgical treatment to remove a seizure focus, generally indicates an upcoming long Honeymoon period if not permanent cessation of the seizures. Specifically, it means the dysplastic lesion was completely resected.
Savanna’s blog has a new page titled “Savanna’s Story“. I have re-written her story from start to finish. It is not a compilation of the posts. Those of you who have met Savanna along her journey or have known her from the beginning, I invite you to read her entire story here. “Like” it, if you choose.
Also, I have upgraded the “About Savanna” page to an abbreviated timeline of events, with a little commentary at the end.
Thanks for all your prayers, support, and comments,
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.
In the shadows, we see great things from Savanna. She responds like never before to the world around her. Strength, she is gaining every day. Finding the blessings in each day are easier as she smiles now when she sees me and then deliberately crawls towards me and wants me to pick her up. Amidst the unending housekeeping, I see a toddler in the shadows exploring furniture and a house she has never seen on her own. Instead of seeing only the neighbor’s little girls play, I see mine play. I see things that scare me when she climbs something on her own the first time. Through teary eyes, I see the innocent love from her brothers who don’t really know what is going on yet. I see a toddler nearly 21 months old, functioning emotionally at a typical 6-9 month level. I see a toddler we are just getting to know. From what I have read, she is just getting to know us as well. I see all of this in the shadows of very short moments throughout the day.
Brandon will at anytime, even if she is crying, jump in the swing and start to do his thing to make her laugh. I have to restrain myself at times, as it almost always works out great. She laughed here from her belly, it was a moment to to shut off the faucet, put the dish rag down, and just watch and absorb.
The clarity and symmetry in her eyes now is stunning. It was never like that if you look back through her pictures.
She now surprises me with what she can do sometimes.
Austin with Savanna on the swing. She is happy here, but definitely in her own world.
Out in the open, she is in pain. It is inexplicable and no drug helps. Most feedings devolve into an act of futility within minutes. She is in pain. She veins out like a devoted weightlifter. She exhibits stridor when upset and is still retracting a little in her tracheal area of her throat even when not upset. She has failed a swallow study, but we were told “it was mostly normal”. A recent clinic visit with a Dr. GI planted a new seed in my mind for differential diagnosis: Candida in her throat below the esophagus. What you say? A yeast infection in her throat, really? Why yes. And I understand it can persist over long periods of time. If I play Dr. House on TV and populate my white board with symptoms and probable causes, Candida wins over re-flux handily (especially since we are already treating for re-flux in an effort to affect the situation – Dr. GI didn’t care about that). This day, like so many others, Savanna seemed ‘okay’ in the clinic at that moment. Why is that? It is because that is the way it goes. I know you were expecting a scientific or smart-a$$ statement, but no, ‘that is the way it goes’ is my answer and I am sticking to it. As soon as we left, all hell broke loose. In fairness, treatment of the patient depends a lot on presentation at that moment in time – in most cases.
Oh great, let’s treat the Candida, right? Wait, treating it without formal diagnosis would be ‘sloppy’ according to Dr. GI. We have to scope her in the OR under GA to confirm. But, even though we don’t know if it is re-flux or not, we will treat that right away. What? What kind of fuzzy ethical line is this I ask myself? I my heart, I know if this were Dr. GI’s kiddo suffering, the treatment plan would be different, or at least on a different timeline. Sometimes, it is what it is. I have accepted that for Savanna, suffering is just part of her life. As her caregiver, I work hard to learn how to help her, but sometimes you have to accept that there is some suffering still to be had by all. In His plan, I think this suffering helps reduce the mediocrity toward life when there are good times. Without doubt, it has changed the way I see the world in terms of special needs people. For starters, I see them now, which is in and of itself a big step for many people like me with virtually no background whatsoever.
“Oh don’t worry…” says Dr. GI, “If the situation gets worse, call us.” And, you will do what, exactly? Gosh, can it get worse? For a split second, I forgot. Yes, it most definitely can get worse. I count my blessings along with each day she seems to be seizure free. So for now we wait. We wait for the day she goes under the cloud of anesthesia and away from us – again. To a place where helping her as her parent, we have to let her go. From there, we are actually helpless. It is a dark feeling. It feels like you are at the bottom of something where no one understands, where you are unimportant despite great lengths that have been taken to educate yourself, despite the emotion surrounding the sacrificial, endless love and care that is required each day to survive. I will wait for something miraculous to take place yet again on that day. I will wait for that moment in the waiting room, where I hope to get good news. And like past experiences, hope a problem is identified that can be repaired with restorative measures. I just wait.
Tristan ‘graduated’ pre-school after only 4 weeks of enrollment. I did this so I could have a little break while Rebecca was travelling. The lady in the very middle in the white runs the school and could not have been nicer to me. Then I learned she had a daughter with special needs who has since gone to heaven. I am not sure how much harder it can be on this earth to watch your child slowly succumb to a rare, horrible syndrome. Even with what we have been through, I can’t imagine what she had to handle as a parent.
On a lighter note, Tristan, Brandon, and now Jackson have continued the pirate gold hunting activity started when Grandpa Squiz was here last (thanks….) Our neighborhood is still being developed which includes a lot of lake digging. So, we head when the weather is good and the equipment is resting to ‘look for pirate gold’ that might have been uncovered while they were digging. These are fun times indeed.
In the excavator bucket!
How many people can say they have been on a D6 dozer…
With friends, exploring the new sections of lake being dug in our neighborhood.
What color is my tongue?
It’s summertime!
Having Rebecca working from home has been well, interesting. great! She traveled away from home the first 6 of 8 weeks (6 consecutive weeks) which was very difficult. The last day of the last week of this travel marathon, the kids were bound and determined to say up to meet mommy, not scheduled to come home until around 1am. The last one asleep was Tristan who made it until 11pm. This was a moment I took to low light photography and got a cute picture with a 30 second exposure. It came out great with wonderful color and detail. Austin is passed out face down on the floor, and Tristan and Brandon who are best buds, were inseparable as usual. Savanna, where else, in the sensory swing.
We have wonderful neighbors who help me with the kids. They are willing to let me nearly kill myself on their boats trying to learn how to wake-board. (I am forecasting the need for services from adult doctors at Memorial Hermann one day if I keep trying.) They too have little ones and we are having fun teaching them all how to ski. Tristan and Brandon have skied now several times and are loving it.
Tristan skiing on a small arm of our lake very close to our house.
We have entered a contract with another Au Pair agency to accept an Au Pair, so full-time help is on the way! Her arrival will be early July and we can’t wait. There are projects around the house that need attention, things to paint, things to fix, things to change, just things to do. None of which I can do while spearheading Savanna’s care and keeping the other three kids alive entertained, well fed, and clothed. Somewhere in the middle of all the therapy, appointments, and ‘entertainment’, there is endless daily cleaning and housework that in spite of the effort, still leaves the house in a somewhat embarrassing state at pretty much all times while I am on duty. I am sure Rebecca can expound greatly on this issue.
I feel like I am on an island, far away from land, but close enough to see it. I am walking a fine line, tip-toeing on eggshells, carefully navigating freshly frozen ice on a pond. I am deliberately trying to starve her just enough to stimulate the desire to eat, but also making sure she is healthy for recovery from major surgery. Some people might read this and have differing opinions on what we should be doing to help her. Help her we are though, as she continues to improve. In retrospect, had Savanna not already have a G-tube placed, this situation might have been resolved a long time ago. Dehydration would surely have set in within a week or so of being discharged, and she would have been back in the ER. We might not have been discharged at all looking back. What can I say? It is a recovery in the shadows.
These four of mine, they trudge out to the middle of that hay field to satisfy a mother’s need for remembering moments. My sister looking through the viewfinder seeing us all laugh at posing just so, and smiling on cue.
She is Kaptured by Kelly and capture she does. Capturing moments this mother’s heart needs. Not just for the picture to be framed, but for the laughter of the day to sink deep into my soul, so that on days we are apart I can remember those special smiles we had out there in that field.
Small moments made big in my search for simple joy. Simple pure joy that fills a heart that overflows love. A kind of love that spills out when there are tough days. On days that we are separated by space or days when there is an empty house quiet and still.
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’. 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.
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.
Savanna's Journey 