A Published Essay in the Dads of DisAbility Project

Posted on April 15, 2014 by kenlininger

When you search around for the paternal viewpoint of having a child with a disability, you struggle to find information. The maternal viewpoint on the other hand, plentiful information all around.

Gary Dietz authored and collected 42 pieces and organized them in a strategic way than keeps you wanting to read more. The book is titled Dads of Disability, and it is a compelling read.

Some essays are about an acute period, such as a specific event or moment in life which was poignant. Some describe the author’s life experience more broadly by discussing multiple events that span significant periods of time.

Gary divided the collections of essays into sections that resemble the cycle of life. Such as life, there is a beginning, middle, and an end. Some parts very joyful, some parts somewhat dark. All are important and provide borders for a portrait of life, life as a dad…

View original post 1,015 more words

Another Diagnosis Day: Autism #2 (Video)

Posted on March 10, 2014 by kenlininger

My apologies. I included a video in the original post (at the end), but it didn’t work for some reason. It is fixed now, or you can view it here.

It begins at Christmas after returning from our long trip to see family. A few clips of time on the Christmas gift of a trampoline, Austin falling asleep in the booster seat at dinner, Savanna during O/T, and then some selfie video trying to get her to talk for the camera. Enjoy.

dad life.

Posted on January 29, 2014 by kenlininger

Reflection. I can do this sometimes late at night or very early in the morning. I think about our family, what an amazing journey it has been. In less than a month, I will be the Dad of a 6 year old. Good grief, where did the time go? I often find “mom” stories out there, written as family stories. It is rare that I find the “dad” stories.

Today, I want to share a post from a Dad named Ross. They have twins along with a older child, very similar to our situation. Their pregnancy was rife with danger and uncertainty, yet the conclusion was pure joy and miraculous. This particular post from this Dad exudes thoughts and feelings I had not only when our twins were born, but when I unplugged from the workforce to be a SAHD. He does follow up with another post (part 2) that does describe the fun moments in their day to day journey. It is amazing how small those were at the time, but how big they become later. Our twins are older now, but boy does this post bring back memories.

I have many things to share about Savanna’s Journey as of late. It has been a fast start to 2014. We have already met our insurance deductible (in theory), and January is not over yet! Stay tuned. Ken.

dadlifeblog

I haven’t written a blog post in awhile and that’s mostly due to the fact that every day is the same. Wake up around 4, hold a baby until 6, feed the twins at 6, Maebyn wakes up at 8:30, feed Maebyn breakfast, feed the twins again, feed Maebyn lunch, put Maebyn down for a nap, feed the twins again, Maebyn wakes up from her nap, feed Maebyn a snack, feed twins again, MaK gets home from work, feed Maebyn dinner, feed twins again, put Maebyn to bed, feed twins again, space out on couch, feed twins and hope to go to bed for a couple hours…. And repeat.

The day to day adjustments have been hard and taking care of three kids is not easy but by far the hardest thing that I’ve learned through these last couple of weeks is I no longer have a life outside of…

View original post 691 more words

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

2 Years Ago, It Was Christmas 2011, and…

Posted on December 24, 2013 by kenlininger

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Have a Blessed Christmas everyone and safe travels!

-ken

Epilepsy Awareness, Disneyland, and a New Savanna Video

Posted on December 10, 2013 by kenlininger

I know this post should have come last month, but my time to write has been very limited lately. I wanted to share two moments that because of Savanna, I experienced completely differently than I would have otherwise. I have come to realize that Epilepsy is an invisible syndrome for most that don’t have other identifiable features that would indicate a problem. I have found that once I briefly describe Savanna’s situation to someone I don’t know, I usually hear in return “I have a sibling/friend with epilepsy.” And therefore are educated, right? Sometimes. I find it amazing that epilepsy touches so many in the world. It can have a great impact on a significant number of people around that person.

Most recently, I was at a chiropractor getting muscle work done. This is one of those times when small talk content is a decision. I want as many people to know about Savanna as possible, because there is simply not enough awareness out there that this happens and sometimes dramatic treatment alters the trajectory of the patients life in magnificent ways. The first step to the solution to any problem is awareness. IS is rare, and often misdiagnosed far too long. Anyway, do I say I have a daughter with epilepsy in remission from surgical treatment, or just leave it out? It takes some experience to decide on the spot whether or not to mention it. I decided to mention it this time, after all I am in a healthcare organization and there is usually more awareness than other places.

I have learned how to condense the situation into one or two sentences. She seemed interested. Then here comes the statement (big surprise): “Oh, my best friend has epilepsy.” She continued, “Yes, she has trouble maintaining her driver’s license because of the seizures.”

Engaged at this point, thinking she understands at least a little, I respond, “What kind of seizures does she experience and what medication is she taking?” I ask this not to pry, but rather I am always very interested in people who battle this and live somewhat normal lives. This person responds “Uh I don’t know anything about any of that.” At this point, I became upset. I tried to stay calm and understand her perspective. After all I have learned, I now know some people can only handle so much information. But, I really couldn’t say another word to her after that. I pretty sure she understood the silent treatment, and I hope it left an impression.

So, you have a ‘best friend’ who has seizures, and you don’t know anything about it other than she has trouble maintaining a driver’s license? That just seemed idiotic at that moment. A best friend knows far more than your driver’s license woes. What you have is a texting buddy who happens to have epilepsy, is what I thought to myself.

Maybe the best friend with the epilepsy doesn’t want to share any more information than that with you, true, but doubtful. If I could go back and relive that moment, I would have crawled out of my turtle shell and said something. What exactly, I am not sure. But, if I had a best friend with epilepsy, I would want to know what kind of seizures they experience and the triggers. I would want to know what medications they were taking. I would want to have a clear understanding of what to do if a seizure happens in my presence. Mostly, I would want to know how I could be the best friend possible.

My second experience is disability related versus just epilepsy, but it fits the theme. When Savanna was just starting to have breakthrough complex partial seizures, we had plans to visit Disneyland. The experience was excruciating, yet I felt surprisingly calm at the same time. We scheduled a 36 VEEG months prior for 2 days from that point. It was the best scenario possible. (What are the odds?)

While at Disneyland, I noticed scores of children special needs and disabilities. I had just never seen them before, for various reasons. There was a couple near us when we were getting lunch. It was clear they both had Down’s Syndrome. The young man seemed normal other than the typical physical features people with Down’s Syndrome develop. The woman appeared to have more physical challenges and had a custom wheelchair.

They gathered their things and took off for the bathroom at one point. I wanted to say hello, and ask them if I could help them in any way, but I hesitated and don’t know why. It became clear they were not there with anyone else, or if they were, they were not around at that time. I watched as the navigated the huge crowd and suddenly imagined a very difficult situation when they actually found the restroom. The mechanics of what they were about to undertake seemed impossible.

I remember my heart overflowing with emotion for a second (or two), and thinking about Savanna’s future. Who is going to take care of her if she needs a lot of assistance? What about when I die, who will take care of her? Will she out live me? Will anyone love her the way that man loved that women? Will she even be able to understand Disneyland? I also remember talking to Rebecca briefly throughout the day, and as it turns out, she too had a heightened awareness of the people around us. We both noticed so many people who that day at Disneyland opened our eyes wide to challenges some people and families face.

Infantile Spasms wrecks the emotional stability of the parent, as well as the brain of the child. It is so easy wallow in the ‘what ifs”. It can consume you. As I think back about that day, I probably would not have noticed these people in the same way nor would their presence have affected me as much. Why is this important you might ask? It is important to me now because I have to chance to help others affected by this syndrome by sharing our story, our testimony. Through this mission, I now am closer to God, and just a better person.

Savanna has helped me be aware. She has inspired me to further my education through researching all aspects of her syndrome, treatment, and overall care. Savanna is doing well, really well. She teaches me everyday. I leave you with a video of her latest progress. It speaks for itself.

-dad

Three things you didn’t know about epilepsy and genes

Posted on November 13, 2013 by kenlininger

We continue to explore the genetic cause of Savanna’s epilepsy. Our local genetics group has given up. At first, I wondered why they ended the relationship on their terms, which was a bit unusual considering our experiences.

We engaged a lab at the University of Arizona that has a particular interest in these scenarios, and helping families like ourselves. We are on the cusp of receiving their findings, although I have been notified in advance there is little to share that is different from facts already known. Very disappointing considering the out of pocket money invested even though we knew this may be the result.

Shortly after receiving that communication, I saw this blog post. I cannot say ‘the light went on’, but I can say my laymen understanding of our situation has been enlightened.

Beyond the Ion Channel

Fall colors. Just a brief summary of how this post originated. Eckernförde is a small city north of Kiel and the weekly Sunday destination of my daughter and me because of the wave pool. This past Sunday, daylight saving and the fact that she didn’t like her dinner had confused the little girl, and we had been awake since 4AM. As a consequence, she fell asleep on the way, and I kept driving to let her sleep. We made it as far as Haddeby, and I used this time to mentally put a post together that I had been planning for some time. These are the three things that are often misunderstood with regards to epilepsy and genes.

View original post 889 more words

Guest Post – Mixed Up Mommy

Posted on November 10, 2013 by kenlininger

Infantile Spasms are not diagnosed early in many cases due to a lack of knowledge, even by physicians. I am not putting any blame on physicians, but the fact is that this is so rare, most practicing pediatricians simply won’t even see a case in their career. Parents are almost always blindsided by such a diagnosis. In some cases, a family has warning of a symptomatic onset of this epilepsy. All scientific evidence indicates early diagnosis and aggressive treatment gives the patient the best chance at the not only stopping the seizures, but the best developmental outcome as well.

The only thing I have obsessed over more than my son’s tuberous sclerosis complex diagnosis was the possible onset of infantile spasms. Since we had Connor’s diagnosis shortly after birth, we were in an uncommon position of knowing to be on the lookout for this rare and catastrophic seizure type. We were fortunate about that, though it certainly didn’t feel that way at the time.

Connor was born with TSC, a genetic disorder that causes benign tumors to grow on the organs. The tumors can wreak havoc with the functioning of the organs. He was born with several brain growths called tubers that caused him to have complex-partial seizures from the time he was a few hours old. He spent five weeks in the NICU as his seizures proved difficult to control with medication. We thought he would undergo brain surgery in his first month of life. One (of many) 48-hour EEG recorded 82 seizures, the majority of which were subclinical (not visible to the eye). Eventually they decreased enough that doctors felt he could go home — on a cocktail of three seizure medications — and return for surgery when he was bigger and it was safer. He underwent a resection of the right frontal lobe at four months and we entered a new seizure-free life.

For a month.

Then it happened. The moment I had lain awake dreading, watched countless YouTube videos in preparation for and prayed a whole lot not to happen(for someone who has never been particularly religious). That jackknife movement, arms flying up, knees up ever so slightly — the spasms were here.

Infantile spasms occur at a far higher rate in the TSC population than in the regular population. I believe the statistics said that 40 percent of children with TSC are estimated to develop this complication. I was so sure we could be part of the 60 percent. This wasn’t based on any sort of logic, just grasping at straws of hope.

I knew what I was seeing immediately. I had feared this moment for so long that the shock of it brought on a panic attack. I became dizzy and had to back into the chair in his room. My husband asked me if I was sure. I was, but I still — grasping at those desperate straws — said that maybe, just maybe I was wrong. Let’s wait and see if it happens again.

I took Connor into our room and we both fell asleep, him drained from the seizures, me from the panic attack. We awoke a couple hours later and went to the kitchen. I laid him on his playmat and sat down to eat. He was hanging out peacefully when it happened again. And again. And again. No more time for denial. I got on the phone to his neurologist. We already knew what the plan was.

I should mention that when I worry about stuff, I like to get really detail oriented. So one of the things I had obsessed over was that the spasms would start on a weekend when his doctor would be unavailable. But it was only a little after noon on a Friday. Thank goodness.

The office message began to play. Oh. My. God. They close at noon on Fridays. How had I forgotten that? Would I have to go to the ER? Wait, I could page him, the message told me. Relief washed over me.

The partner of my son’s primary neurologist called us back. He’s great too, and he was actually the one that originally diagnosed him. Ironically, Connor had an office EEG earlier that week as a follow up to the surgery. He didn’t sound optimistic when I describe what I saw, but he told me he would take a look at Connor’s EEG which hadn’t been read yet. When he called me back, I heard the dreaded word — hipsarrythmia, the chaotic brainwave pattern associated with infantile spasms (I want to note that many TSC parents report that their child presented with infantile spasms, but no hips on the EEG. So if you see something suspicious but the EEG is clear, push the issue!)

The hips was there before the spasms started. Well, at least the definite spasms. There were a couple strange movements he had done in the couple weeks prior that didn’t repeat and weren’t so obvious, that I now questioned.

An emergency prescription for Klonopin was called in to get us through the next couple days until we could get him started on vigabatrin. Vigabatrin/Sabril is the front line recommendation for TSC and is only available through mail order specialty pharmacies. ACTH has been effective for some, but at lower rates than in others with infantile spasms. The spasms stopped within a couple of weeks, though he persisted to have some strange eye rolling episodes that never showed up on EEG and were never defined.

Connor was already pretty delayed, but we were lucky that we saw no regression. He was subdued and giggled less, but the day after we saw the last spasm, he woke us early shrieking and laughing happily.

For many kids, spasms are the first sign of a problem so they go undiagnosed or misdiagnosed due to how rare they are. As much as my obsessing drained me, it likely allowed us a better outcome. We didn’t have to wait for a diagnosis — we had it within hours and were able to start treating it immediately. Many aren’t so lucky and the spasms cause irreversible damage as parents struggle to find out what is wrong with their child.

I wish I could say Connor was seizure free, but unfortunately his complex partials have returned. In spite of that, we have seen an incredible amount of progress in the last few months. His first 14 months were extremely slow progress. But just since June he has started crawling, pulling to stand, cruising and climbing the stairs. He’s happy, opinionated and in love with Click Clack Moo and Super Why.

The blog, Mixed up Mommy, is a wonderful and inspirational blog about all things TSC and life in general.

Here is a YouTube video of his spasms which I have uploaded in the hopes of helping other parents identify them quickly.

Guest Post – Happy Being Trevy

Posted on November 7, 2013 by kenlininger

A thunderstorm of emotion washed over my heart as I read her recent essay entitled “4 years ago today…” I can relate with everything Danielle describes about their day in the waiting room as Trevor underwent a complete hemispherectomy to control the spasms. Our day with Savanna and her second surgery was strikingly similar. Their blog, Happy Being Trevy, has information about Infantile Spasms and how it affected their son Trevor and their family.

She has taken the time to construct a video of Trevor’s journey, their journey. The video is incredible and a great way to tell the story.

The link to the video is below. But first…

4 years ago today…

4 years ago today…we’d already hugged and kissed him goodbye by now. I’d run my fingers through his curls one last time. God, I miss those curls. And kissed every inch of his sweet face. Inside my heart was screaming “NOOOOOOO!”. There was an intense soul battle raging. One part of me desperate to snatch him off that stupid gurney and run away to the furthest reaches on the earth. The other part knowing we were here to rescue him. Knowing we HAD to be here. My love for him was the gravity force that held me down that day.

4 years ago today…we survived the longest, the most emotionally draining 13 hours of our lives. No day before could compare and no day since has yet to. We spent that day in a waiting room at Detroit Childrens. Feeling so very alone. So far from home. We wanted to wrap our arms around Toby and Bristel but were thankful we had left them behind. Because this was too much for us. It would certainly be too much for them. We watched party after party called to collect their loved ones from the recovery room. Until most of the lights were turned off in preparation for closing down for the night. Until the secretary had long gone home. And security had begun making rounds. And we, who were the first in the waiting room that morning, were also the last to remain. Until I thought if one more minute went by I was going to explode into a million pieces and float away. Because the emotional intensity was that strong.

4 years ago today…I sobbed when the doctors took us to a private room and told us they had successfully removed most of his left hemisphere. Those poor fellows. Asian men are known to be stoic and it was clear they felt awkward with my unrestrained mourning. But one of them had tears glistening his eyes too. My heart knit with his in that moment.

4 years ago today…over 14 hours after we’d kissed him goodbye…we finally saw him again. And he was breathing. Puffy from the fluids. Pale from the blood loss that two transfusions couldn’t hide. Wrapped like a mummy. But he was breathing. And in that moment…that was all that mattered.

4 years ago today…our son survived the Nightmare Miracle surgery that would not only save his life but would give it back to him!

4 years ago today…I had never heard my son’s voice make any intentional speech. This morning he called “Moooooommy” from his bed when he was ready to wake up. This morning he hugged my neck and said “love you”. This morning he told me “No call me Brick” because his new haircut makes him look an awful lot like the youngest child from the Middle. This morning he said “Wednesday. Tuesday yesterday…today Wednesday”. This morning he adamantly demanded chicken nuggets for breakfast. And drove me a little crazy with his cheek. Until he returned my “I love you” sign when he was leaving for school. Which melted me from the inside out.

Not every day these past four years has been easy or fun or miracle filled. But when I stop and remember 4 years ago today…how can I be anything other than joy saturated and thankful?

I confess that it was harder than I thought going back in time like that. Difficult…but also healing. It’s easy to get caught up in the sadness of the now and overlook the joy of how far you’ve come.

If someone had asked me to write the wildest script I could imagine for our family six and half years ago…it would not have come close to the path that has unfolded. Even though this journey with Trevy is very heavy and extraordinarily exhausting, we are SO thankful for where he is today. How far he’s come. For the people who have come beside us to advocate for him and support and believe along side us.

Guest Post – Living With Superman

Posted on November 6, 2013 by kenlininger

This is our story about Living with Superman.

Superman is unable to leap tall buildings in a single bound, he does not fly faster than an airplane and he is not faster than a speeding bullet. He is SO much more impressive than that.

Superman was born at 27 weeks due to high blood pressure causing a placental abruption and preterm labor. He was only 1lb 10oz when born. I can think of a million things I could have done differently. I can think of a million moments that might have changed the outcome. But I will never know for sure. What I do know is that since the moment that little tiny boy, who could only be measured in grams, came into this world; he hasn’t stopped fighting. And, that to me is way more impressive than the comic book hero. I live with a true life hero and my heart beats with joy.

Superman had lost his oxygen supply during the birth and was born not breathing (hypoxic ischemia encepholopathy – or HIE) and in the first 24 hours on the ventilator that was sustaining his life and allowing him to fight, he began to bleed in his brain from the lack of oxygen and then the reintroduction of oxygen. Very similar to a stroke but on a much larger scale. They call this a Intraventricular Hemmorage (IVH). This left him with a condition called Diabetes Insipidus (DI) from a portion that was damaged and now he takes medication daily for it and will continue to do so for the rest of his life. While considered a “rare disease” by the NIH – I have met many people online that have this condition from birth or by accident or because of a brain tumor. And while it is not the easiest of conditions to live with because it is VERY finicky, it is manageable. Just requires A LOT of blood work. Some days I think people that do blood for diabetes mellitus (the sugar kind) have it easy! Blood draws for us are vials not pricks.

Any brain bleed has the chance to cause delays in development and other areas, however Superman now has hypotonic Cerebral Palsy. They told us he would probably not open his eyes, move, sit, eat or anything.

In addition to all the rest, after a period of seizures in the NICU that resolved themselves, Superman now deals with a type of epilepsy called Infantile Spasms. This is a very devastating type of seizure as it basically shuts down the brain and affects development. Most children that have IS will experience an instant delay in development as well as often regress in the development they already had.

In April 2012, Superman had to have laser surgery done on both eyes for a condition called Retinopathy of Prematurity (ROP). Left untreated, in many cases it will progress and cause permanent blindness. Due to the mass amounts of oxygen used, it causes the blood vessels in the eye to basically sprout off and create new ones, overloading the retina with blood vessels that have no purpose. Although his eyes were fixed (and are still perfect over a year later) he now has what is called Cortical Vision Impairment or CVI where the brain doesn’t always register what it is seeing. Because of this condition he has been diagnosed as legally blind.

Superman came home from the NICU after 117 days – gtube dependent. Today, 14 months old, he is completely orally fed and we are on our way to mobility.

As of August 6, 2013 Superman is now again with a g-tube. He is showing signs of eating orally still as long as he is alert but is now somewhat dependent upon it to make sure he gets the proper amount of fluids.

It’s a slow process but as a family we make it together.

Superman has a sister; we call her Diva because, well… she’s a little diva with an addiction to shoes and headbands. She is his #1 supporter. For a girl who didn’t want a brother he is her world. She doesn’t know that Superman is different than other babies; she just knows he is Superman. And that’s how we like it.

Living with Superman is a challenge, it has its ups and downs – but living with Superman has brought us all more love, compassion, knowledge, and gratitude than I thought I could see in a lifetime. I look forward to learning and growing with my little boy on this crazy journey we call life.

[The following is an excerpt from her most recent blog post titled: Blatant Honestly]

But I have not been completely honest with you all.

I can explain the medical diagnoses with precision expected in medical facilities, I can update with day to day happenings with a parent’s expertise but I have never explained the situation with the realities and the gravity of the situation being the focus. Often times I shrug it off, ignore it. Not because I am not aware of it, or I live in some fantasy land where I believe everything is going to be okay. But because I don’t tend to focus on the ‘what if’s’ and the ‘what might be’ and sometimes ‘the what really is’. I know he is non-mobile and non-verbal. Of course, its right in front of me. But most days I don’t see it until I am confronted with the reality of it.

And when I post online, I don’t focus on the negatives. Maybe its because I don’t want to appear weak or overwhelmed. People actually comment on how positive I am since his birth and how they could never do it. As far as the ‘doing it’ part – if you have to you will – the positive part is a choice.

But there is a huge reality that sits in the back of my mind that I haven’t shared with many – if any. Because if I speak it then it’s real. And no parent ever wants their fears to be real. I have two fears in my life that would leave me devastatingly crippled: fear of being homeless, and fear of losing my children. I literally lose sleep at night in fear that my daughter could be kidnapped. Think its crazy? Turn on the news. Check your Facebook page. Missing pictures pop up almost daily. Scares the ever living something outta me.

But the other part of that is losing my son. Now this one is somewhat more rational but yet less rational than the first. Because we were always told he wouldn’t live. He wasn’t supposed to make it through the first week. He wasn’t supposed to make it out of the NICU. Granted he is still here 19 months later. And for that I am grateful beyond words.

But the reality of that situation, the part that sits in my heart, the one that leaves me crying in the bathroom after everyone is asleep (yes, that’s where my tears live – not on Facebook) the ones that have me crying in my car after another long doctor’s appointment – is that at any moment my son could be gone. Of course that is true for all of us, but statistically its less likely to happen to you or me. Superman is missing 45% of his brain. A large portion that reminds his body to work. My biggest fear is I am going to turn around to kiss him or pick him up and he will just be gone. With no warning, nothing. Just gone. And sadly, its not crazy – and its not out of the realm of possibilities. I don’t post these things publicly because I don’t want to post sob stories. We don’t really have any. This is just the reality for us. Its a daily awareness, something we live with every moment of everyday. There is no dramatic illness, no traumatic incident. Just reality. He could be here one minute and gone the next.

I am sharing all of this because I want to be blatantly honest with you all of what really goes on here with us.

What would you do if you lost your child and you knew you hadn’t done everything you could to try to prevent it?

That is also a fear that cripples me, but it goes along with the other part. Like everyone else we have lived in this rough economy for the last 4 years, searching for a light in the dark. When my son was born, laying there in that isolette only days old – knowing he had a brain bleed, the only words that kept running though my head were ‘stem cells’. And I was angry. Angry at politics, lobbyist, religion, anyone and everyone that had some weigh in on why or why we shouldn’t pursue stem cells. My irrational mind screamed that there was something out there that could have helped my son. My proposal for that issue in a different post. I don’t want to stray too much tonight. Then months later, I met a group of parents with children like mine that were pursuing the same alternatives I had searched for his whole life. And I found it. I believe it was divine intervention. Right place, right time. And since then the right pieces of the puzzle have fallen into place. This treatment can not only help his brain to function but repair damaged parts. While I am not naive, I know it won’t grow back what is gone, but it can help what’s there to start working like the parts that are missing. Its the best chance we have to help him survive. I wish I were just talking about having the chance to walk or talk or play with toys. But I am literally talking aboutsurviving. If those parts could be repaired that make his heart beat erratically, those parts that don’t remember to tell him to breathe because they are focused on fighting his chronic congestion or a minor cold… what if.

I won’t lie, I make my way around the special needs pages on Facebook. Like many other parents, searching for kids like theirs, parents in similar situations. And through these pages I have found many fundraisers. Some are for trips to Disney, some are for Christmas gifts, some are even for Xbox 360s. And they have people falling hand over feet to help them get these wishes for their children.

I am asking you to pray – pray for it to be laid on someone’s heart to help us. Stem cells have been shown to help improve the visual cortex and improve vision. A trip to Disney would do us no good because he can’t see enough to even enjoy Mickey’s ears. Honestly, I would never ask for Christmas gifts, but what is a gift going to make a difference of if he’s not here. And he’s non mobile so he can’t even help Dad play the Xbox – but the controller vibrations seem to get a small response.

Please. Share our story. If you can help and you feel its been laid upon your heart to do so we appreciate your generosity. If you can’t, please share our story with others, we never know who God is speaking to. I have tried my best to raise the money needed by selling things, I am trying to pull things together to make things, but I have come to the conclusion that I just cannot do it all on my own.

I am asking that you pray for my son to get a life saving treatment. I don’t want to just IMPROVE his life, I want toSUSTAIN his life. Give him EVERY chance he can have.

I posted the other day that he grabbed my finger and stuck it in his mouth. I cried – because I could see the possibilities. I said to my husband – just think of how much the stem cells can do with this. And most days I feel as if its slipping away. Since we have stopped the seizures, some minor development is taking place, and I know at this point, time is of the essence. They tell you that the first years of childhood is when the brain develops the most – its even more so for those with brain damage. This is when any rewiring that is going to happen will take place.

So please share, please pray. I am not asking that anyone give until it hurts – that is reserved for God, but if you are called upon to share our story or help us – I am not asking anyone to make our day a little easier with gifts – I am asking you to help change our lives. Change Superman’s life.

Here are the current ways to donate:

http://www.gofundme.com/2yttsw

Local and National branches of Wells Fargo Bank – Account name: Living With Superman

Paypal: livingwithsuperman@satx.rr.com

She has a wonderful blog at www.livingwithsuperman.com

Savanna's Journey

Infantile Spasms. Partial Epilepsy. Surgical Treatment. ASD.

Category Archives: Epilepsy