Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly

Open Hands

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This week, I attended a two-day cognitive rehabilitation training sponsored by the American Congress of Rehabilitation Medicine. I’d been looking forward to the training for months, which was designed to train rehabilitation professionals such as speech pathologists, occupational therapists, nurses and physicians how to use evidence-based interventions for impairments of executive functions, memory, attention, hemispatial neglect, and social communication. (All of which are common after hemispherectomy. Evidence-based, by the way, is just a fancy way of saying, “We know this works because we did studies!”) 

Even though I’m not a medical professional, I thought it would be beneficial for me to attend the training since I’m responsible for guiding Joscelyn’s rehabilitation and choosing the therapists who work with her. We couldn’t be more pleased with her current therapists, who are extremely dedicated and highly skilled. Joscelyn’s speech therapist and occupational therapist actually attended the training with me along with a fellow “hemi mom” who is just as committed as I am to doing everything within her power to help her child meet his maximum potential.

Day 1 of the training brought the disappointing news that no pediatric brain injury rehabilitation studies were included in the cognitive rehabilitation manual on which the training was based. All of the case studies presented were adults. Upon hearing of my disappointment, one of the presenters graciously agreed to share a few pediatric case studies with which she was familiar. (If you’re interested in reading those, please leave a comment with your e-mail address and I will happily forward them to you.)

Finding out that the training was geared toward adults was difficult news for me to digest; not just because I have a large, great, ok, consuming need to help my daughter right NOW but also because lately I’ve been feeling a lot of anxiety about her future. “Will she ever be able to live independently? Who will care for her when I’m gone? Who will keep her safe? Who will remind her to complete important daily tasks?” 

It may seem silly to you that I often stay awake at night worrying about things like that when she’s only two years old and we probably have quite a few years before we need to be concerned about such things but considering how things have unfolded in my life over the last couple of years, you can hardly blame me for wrestling with some pretty dark “what-if” scenarios.

 The thought of my daughter, vulnerable and alone at any age, with me unable to care for her, is something that haunts me daily. We are working to provide for her legally and financially but that doesn’t take away my fear that she might someday feel abandoned by me or that whoever is responsible for her will fail to love her or take care of her like I would. 

But back to the training…

Imagine if you will, a room full of clinicians watching a video of an adult patient recovering from a brain injury, working with a therapist on an exercise designed to improve his memory.

This particular patient had been having trouble remembering his actions from the day before, so the therapist had asked him to write his activities down on a Post-it throughout the day and keep the Post-its in his “Memory Notebook”. (More on this in my next post) In the video, the therapist asks, “What did you do over the weekend?”, which prompted the patient then turned to a page in his memory notebook and begin reading from the notes he took.

“At 1pm on Saturday, I went to the grocery store. At 4pm, I did laundry.”

All around me, the clinicians in the room were all focused on the practices and techniques of the therapist in the video but when I looked at the screen, all I could see was Joscelyn twenty years from now. 

And I started to cry.

(My hilarious sister, upon hearing this, assured me that this was probably a welcome sight for the physician who presented the video. “Finally, someone gets my work!”, he must have thought to himself.) :)

I was sitting there, feeling despondent and overwhelmed and woefully inadequate to address the myriad neurological deficits which my daughter now faces after having half of her brain surgically removed, when the presenter remarked on something I hadn’t noticed before.

“What was the patient’s reaction to using this technique?”, he asked the audience.

“Very positive!”, remarked one attendee. “He was happy!”, commented another.

Wait…What?…He was happy?

I looked up at the screen again and replayed the video in my mind.

He was! He was happy! The therapist asked him what he had done over the weekend and instead of feeling frustrated or angry because he couldn’t remember, he used the tools that had been given him and happily answered the therapist’s questions.

I often tell people that all I want for my children, all of my children, is just for them to be happy.

Nothing upsets me more than the thought that Joscelyn might never, because of her condition, despite ALL of my best efforts and ALL of the best interventions known to modern science, be happy; that she will always on some level, feel frustrated, inferior, lost, isolated and alone. 

That fear torments me. It’s what drives me with such intense passion to try to “fix” the damage to her brain.

But there it was, evidence to the contrary; proof that even with profound memory deficits, a person could still be happy; could simply enjoy chatting, just like anyone else would, about what he did over the weekend with a friend.  

Amazing.

Later in the day, we learned about another memory aid, this one electronic, called “QCard“. According to its developers, QCard is a life changing app for those living with Brain Injuries, Concussions, Alzheimer’s, Dementia, ADHD, Amnesia or anyone with memory impairments. QCard’s founder was involved in a serious motor vehicle accident, which resulted in an acquired brain injury that changed his life. His struggles and frustrations lead him to develop Qcard as a tool for himself.

We watched a video a young man who had gained independence after learning how to use the QCard app. Prior to its use, he had been reluctant to admit to anyone that he was having a problem remembering to do things like take his medicine or complete household chores. After successfully using the application for a time and gaining independence, he readily admitted his need for it.  The presenter explained that the ego often can’t admit impairment until it has found a way through it. Once the way through has been found, the patient feels empowered and no longer fears nor feels threatened by their limitations-

But the choice to embrace and use the tool was up to the patient. One has to be willing to open one’s hand and let go of something in order to receive.

We must let go of the life we have planned, so as to accept the one that is waiting for us.”, said Joseph Campbell.

The training this week didn’t give me the instruction I was looking for in how to help my child recover from severe brain injury but it did teach me that I’m not done letting go.

I’m still clutching the full responsibility for Joscelyn’s future health and happiness as though it belongs solely to me, when in reality, that’s an impossible burden for one person to assume. 

I need help.

Fortunately, there are more tools available than I ever imagined.

All over the world, people with brain injury are leading full, happy lives. Technology is advancing all the time and brain research is now a high priority.

 I gained a great deal of insight into how the brain works over the last two days and I learned a variety of rehabilitation techniques and strategies which I promise to share with you in a follow-up post. (And which may or may not still be in practice by the time Joss is an adult) But more importantly, I strengthened the one key element that makes any rehabilitation strategy work: 

Hope.

Right now, I drive Joscelyn back and forth to her various therapies because I have hope that her therapists will be able to help her. I have to open my hand to let go of my fear of an uncertain future for her in order to embrace a newly imagined future in which she finds healing and happiness.

As Joscelyn grows, she could very well reach a point developmentally in which she needs to take more responsibility for her own rehabilitation and recovery. At that time, she’ll have to open her hand to let go of her own ego in order to admit that she needs help and to embrace the tools and techniques offered to her in the hopes that they will make her life easier and more enjoyable.

Her wonderful therapists: past, present and future, open their hands every day to let go of strategies that are outdated or simply don’t work in order to embrace new, more effective tools and techniques for their patients.

This training reminded me that I’ve been keeping my hands clutched in fear instead of open to receive.

Lord, help me to grasp only what YOU want me to hold onto and help me let go of everything else that keeps me from fully embracing the life that is waiting for me.

 

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Joss is in “Healthy Living Magazine”

Joscelyn’s story was featured in Healthy Living Magazine this month! 

You can read the story by clicking here. (The story is on pages 88 and 89.)

Talented photographer Fred Lopez took the photos in the article, as well as this precious photo:

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Joscelyn has been doing very well since her shunt placement surgery a few weeks ago. She will undergo neuropsychological testing next week which will give us a better idea of how her brain is functioning. The results will help us to better plan her education and rehabilitation for the next few years. 

I will also be attending a training session later this month to learn how to best use Joscelyn’s AAC (Augmentative Alternative Communication) Device at home. Then, in November, I am excited to have the opportunity to learn from some of the best brain injury rehabilitation specialists in the country at a Two Day Cognitive Rehabilitation Training at the 90th American Congress of Rehabilitation Medicine convention.  I will share what I learn at both of these training sessions here on the blog for the benefit of those of you who are following us and are also working with brain injured children.

I leave you today with a quote by Jessica Lange that the editors at Healthy Living Magazine added to Joscelyn’s article. I found it to be not only beautiful but also very inspiring. This is the kind of mother I strive to be!

I hope it inspires some of you, as well! 

“The natural state of motherhood is unselfishness. When you become a mother, you are no longer the center of your own universe. you relinquish that position to your children.”

-Jessica Lange

 

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Bilge Pumping

Last week, I wrote that Joscelyn would be undergoing testing to determine the cause of her intermittent vomiting. 

A CT Scan at the hospital revealed that the ventricles of her brain were swollen with cerebrospinal fluid. Her neurosurgeon diagnosed her with progressive hydrocephalus. On Thursday, September 5, Joscelyn underwent surgery to have a VP shunt inserted to help drain off the excess CSF fluid her brain is producing.

It was her 7th surgery. 

Her daddy (aka “Pringleman“) told his co-workers in his out-of-office e-mail that he wouldn’t be at work that day because doctors were installing a bilge pump in his baby’s brain. :)

(For those of you unfamiliar with nautical terms, the bilge is the lowest compartment on a ship, below the waterline, where the two sides meet at the keel. It also refers to the often dirty and smelly water that collects in this area. Water from rough seas, rain, leaks in the hull or spillage that does not drain off the side of the deck drains down through the ship into the bilge and must be pumped out to prevent the bilge from becoming too full and threatening to sink the ship.) 

He was kidding of course, but the words have stuck with me since the procedure.

We have spent close to three of the last fourteen months in the hospital. The longest stretch that we’ve managed to stay away since Joscelyn’s initial surgery in July of 2012 has been 5 months. 

I don’t know about you but I’m a planner by nature. 

I have a smart phone but I still keep all of my appointments written down in an old-school Daytimer, just because the visual learner in me likes to see “the big picture” for the month all in one place. I like routine. Don’t get me wrong, I enjoy spontaneity on occasion but I find that too many changes to our schedule brings a level of chaos that I’m just not comfortable with.

Nonetheless, the last fourteen months have been filled with inordinate amounts of chaos, stress, confusion and turmoil. Having a child with special needs tends wreak havoc on one’s schedule. 

I’ve had to cancel so many plans and back out of so many commitments over the last two years, I finally just stopped making them entirely. 

Did I resent feeling a need to do that? Yes. I didn’t want to turn down speaking engagements because they involved travel but I was afraid to leave Joss. I didn’t want to be fearful of planning a family vacation because we’d be too far from our local hospital and doctors if she developed a problem. I wanted us to be the poster family for a catchy slogan like, “We might have epilepsy in our lives but it doesn’t have us!” I wanted to be like this amazing, intrepid family who travel all over the world with their five children, one of whom has special needs.  I promised myself that once we’d been out of the hospital for at least six months, I’d be more open to accepting more opportunities, letting others care for Joss more and being braver about making plans.

We made it five months.

Just this morning, I called to cancel the appointment we’d made for today at the Harmony Barber Shop in Walt Disney World to get Joscelyn’s first non-surgery related haircut. When I made it, I was hopeful that today would be a day of fun and healing; filled with pixie-dust and magical photo opps-

Instead, I find myself trying to pump bilge,

nasty, smelly, brackish, yucky bilge,

Not bilgy water exactly but bilgy thoughts; negative thoughts that threaten at times to sink me entirely.

The negativity  (like water) that flows onto and over the deck of the ship (my mind) doesn’t become bilge until there is much of it that it begins to collect. In the same way that sailors have to monitor the level of bilge water to protect the ship, I have to monitor my negative thinking and pump out those negative thoughts before they overwhelm me.

How do I do that?

1) Gratitude: Joss just celebrated six months of seizure freedom. The hemispherectomy surgery was finally declared a success! We also weaned her from ALL of her anti-seizure medication! She is learning to walk, learning to speak through sign language and the use of a speech device and even uses Righty on occasion to help stabilize herself. She is recovering well from this last surgery and shows every indication of only getting better as time passes.

2) Teamwork: On a ship, no one crew member is responsible for monitoring bilge. Every crewman shares that responsibility. If I think that I alone am responsible for Joss’ care, I can easily get overwhelmed. The reality is that her father, her extended family, my friends, her doctors, her therapists and many others are standing by to help me whenever I need it. (And when I follow through with the courage and willingness to actually ASK!) The degree to which I allow others to share in the responsibility of Joscelyn’s care has a direct effect on my bilge level.

3) Awareness: On one level, I have despised every second we’ve ever spent in the hospital. No one wants their child to be sick or to see them suffering and in pain. Add to that, the fact that there’s a fine line between a hospital room and a prison cell. You can’t leave. You have little control over your environment. Your privacy and personal freedoms are largely stripped from you. The average hospital stay is alternately stressful, depressing and boring. The policies and procedures, while necessary, almost seem designed to produce maximum irritation on the part of the patient and their family. 

But whenever I focused on the people we met at the hospital, instead of the circumstances that led us to be there, I seemed to always find something inspirational, beautiful and healing to celebrate. 

One day, when Joss was watching the Wiggles perform a traditional Caribbean folk song called “Brown Girl in the Ring“, a woman from housekeeping walked into our room. She started mopping the floor and then stopped suddenly. She stood still for a moment with her eyes closed and then started humming softly and swaying from side to side. When she opened her eyes, she smiled broadly at us and explained, “I’m from Jamaica. I remember dancing to this song with my brother and mother when I was a little girl. I haven’t heard it in many years. Thank you!” She then finished mopping the rest of the room, still humming, with a faraway happy look in her eyes. 

On another of our stays, we were visited by a young woman in a wheelchair who was giving away books to the sick children in the hospital. She was born with a condition that left her unable to walk and had, herself, spent much of her  childhood in and out of the hospital. Now that she was older, she refused to let her physical limitations keep her from serving others.

This last visit only lasted about 36 hours but in that short time, we met a young man who had been considering epilepsy surgery. After meeting Joscelyn and hearing her story, he was inspired to go forward with it. Joss may only be two years old but she is making a huge difference in people’s lives!

I don’t feel guilty anymore when my thoughts take a bilgy turn. I know that people don’t want me to feel discouraged and are often quick to correct try to encourage me.  But just like water, life is unpredictable. Sometimes the sea is calm and sometimes it comes at you with unbelievable force and fury. It’s hard not to take on a little water when the waves are towering over and crashing into you in the rapid succession that we’ve experienced over the last couple of years.

But I also know that the storm won’t last forever. Even monsoon season has to end some time, right? :) 

We were really hoping to avoid getting a shunt for Joss. Shunt technology hasn’t really changed much since the 1950′s and failure is quite common.  Shunts can become clogged, individual parts may malfunction, they can become infected, they can under or over-drain the CSF fluid, they can become reprogrammed and they can be damaged or broken through accident. Some patients with shunts have gone 20 or 30 years without a problem and others have had to undergo multiple shunt revisions in a very short period of time. Joscelyn’s doctor estimated that she might go 5-7 years without needing an adjustment.  Once a shunt malfunctions, the dangerous symptoms of hydrocephalus typically return very quickly and a surgical fix must be sought immediately. 

The truth is, every day of Joss’ life is a day in which we may need to return to the hospital, possibly with very little  notice. That’s just part of our “new normal”.  I will likely never feel totally comfortably leaving her for long periods of time or going anywhere located very far from a good pediatric hospital. (You probably won’t catch me placing non-refundable deposits on reservations, either.)

But that reality doesn’t necessarily preclude a reality in which I can someday make at least some plans. 

I just need to learn how to go with the flow a little better. The simple fact is,  I may set course for one destination and end up somewhere else. That’s not necessarily a bad thing. It’s just the nature of the sea. We never know where the wind and waves will take us.

But we also never know what unexpected gifts the tide will bring in.

So, we’ll just keep swimming.

And we’ll pump, pump, pump.

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Two Big Milestones…and a Mystery

Joscelyn’s last surgery to remove malformed brain tissue from her left hemisphere was on February 27th, 2013. 

You can see the before and after image here:

brain

As you can see in the “before” image, the majority of her left hemisphere had already been removed. The tiny highlighted portion which was taken in February measured approximately 1cm x 1cm but was still large enough to cause her to seize uncontrollably. Since this surgery, we have seen (almost) no signs to indicate that she is having seizures. (More on this later)

Many people are curious as to what fills the space in the cranial cavity after hemispherectomy. In early experiments with the surgery, doctors thought they would need to fill the space with something and tried all sorts of filler, including sterilized ping pong balls!

Eventually, they discovered that the cavity fills with cerebrospinal fluid, the same fluid that cushions the brain normally.

Cerebrospinal fluid is mainly produced by a part of the brain called the choroid plexus, in the lateral, third and fourth ventricles of the brain. Any extra fluid produced is reabsorbed into the bloodstream through arachnoid villi, which are located on the brain. 

Boston Children’s Hospital made a great video explaining this process here: 

 One of the potential side effects of hemispherectomy surgery is hydrocephalus (“water on the brain”): a dangerous buildup of cerebrospinal fluid within the cavities of the brain. (This makes sense when you consider that the surgery removes at least some of the villi responsible for draining the excess fluid.)

Some of you may remember that after Joscelyn’s second surgery in July of 2012, her brain proved to be unable to effectively process the amount of CSF (cerebrospinal fluid) her body was producing. A shunt was installed to drain the excess fluid from her brain to her abdominal cavity via cathether. This shunt was later removed in a subsequent surgery, when it was discovered that more malformed tissue on her left hemisphere needed to be removed. 

Since that time (and by no reasonable explanation whatsoever), Joscelyn has managed to process the excess CSF fluid on her own but we have continued to be on alert for any potential signs that she might be developing hydrocephalus. (This will require life-long diligence on our part, as hydrocephalus can develop at any time.) Signs of hydrocephalus include:

  • Abnormal enlargement of the head
  • Headache
  • Nausea or vomiting
  • Fever
  • Delays in walking or talking
  • Problems with previously acquired skills, such as walking or talking
  • Blurred or double vision
  • Unstable balance
  • Poor coordination
  • Irritability
  • Change in personality
  • Problems with attention
  • Decline in school performance
  • Poor appetite
  • Seizures
  • Sleepiness
  • Difficulty remaining awake or waking up

Unfortunately, I’m not bringing all of this up simply because it’s Hydrocephalus Awareness Month

About three weeks ago, Joss began vomiting intermittently. At first, we hoped it might just be the normal tummy upset that often strikes little ones but since it has continued, we have to treat it as a sign that she may be having trouble processing the excess CSF again. 

We are headed back to the Children’s Hospital this week for testing. :(

While it’s possible that the vomiting may be seizure related (especially since Joscelyn has had some seizures in the past that presented with vomiting) it seems far more likely that she is having pressure related issues.  So, for lack of any definitive evidence to the contrary, we are continuing to proclaim the hemispherectomy surgery a success and to celebrate six months of seizure freedom. 

Many of you know that we also began weaning Joscelyn from her anti-seizure medication a few weeks ago and might be wondering if the vomiting is related to that process. Joss began vomiting before the weaning process began and the reduction of medication hasn’t increased the frequency of her episodes, so as of right now, we don’t think the two are related. If the vomiting was due to seizures, it stands to reason that the number of episodes would have increased as her medicine was reduced and that has not been the case.

She is now completely weaned from all of her anti-seizure medication and we’re left with a bit of a mystery.

In all other respects, she seems fine. She is progressing very well in therapy and overall, seems very happy.

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We are hoping to avoid having a shunt, since they can be quite problematic and our sweet girl has undergone so many surgeries already but we will, of course, do whatever is ultimately best for her. 

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As always, we welcome your prayers and good thoughts! Thank you!

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Sam Moran Contacts Joss!

Oh, my goodness! 

I am in TEARS!

A few weeks ago, I posted a message on Sam Moran‘s Facebook fan page thanking him for sharing his wonderful gift of music with the world and most especially, with our baby girl, Joscelyn.  

As the mother of five, I know first hand that keeping little ones amused and entertained is always a challenge.  I’ve always appreciated the creators of Barney and Blue’s Clues, educational TV shows that bought me a few precious minutes of sanity while raising busy, rambunctious preschool aged boys.

Many of you might recognize Sam as the “Yellow Wiggle” in the Australian children’s musical group “The Wiggles“.  Joscelyn has always loved the Wiggles and I made sure to always bring their CDs and videos to the hospital with us whenever she checked in for epilepsy monitoring or surgery.

Seeing Sam on the computer or TV screen never failed to make Joss smile. When the nurses would come in to take her blood pressure or take blood from the tiny IV in her pudgy hand and Joscelyn would stiffen and cry out in fear,  I would turn on one of Sam’s videos and we’d listen to him sing “Twinkle, Twinkle Little Star” or another favorite Wiggles tune. 

Slowly, the numbers on the bedside monitor recording her heart rate would begin to go down and Joss and I would both relax.

When I posted the message on his fan page, I wanted Sam to know that all of the hours he spent practicing his music as a child, all of the professional dues he paid as an up-and-coming performer and all of the hours he spent away from his family touring with “The Wiggles” were appreciated; not just by mommies who enjoy having someone else entertain their  healthy, neurotypical children for 30 minutes so they can drink a cup of tea or read a chapter of a book in peace but also by a very sick little girl, in a far flung hospital room on another continent, fighting to recover from having one half of her brain removed.

And also by her mommy; an exhausted, stressed-out, under-slept, fearful and anxious mommy desperate to find something, anything, that would help take her baby’s pain away and restore some tiny measure of the carefree childhood joy that being born with epilepsy had denied her.

Joscelyn just celebrated five months of seizure freedom. Her recovery is progressing well and those dark days in the hospital are finally becoming a faded memory but still Sam Moran’s music plays a big part in Joscelyn’s recovery.

Three times a week, I drive Joscelyn to Orlando, Florida to receive occupational, speech and physical therapy. My daughter might be non-verbal but she made it quite clear to me early on that I would either be listening to her music in the car on the drive there and back or be made to suffer her wrath. :)

As you’ve probably already guessed, I now the words to every Wiggles song ever written. :)

You can imagine my delight, glee, joy, Nay! Sheer ecstasy… at finding out a few months ago that Sam Moran was releasing a SOLO project called “Play Along With Sam“.

NEW music! Hooray

As soon as it was available on iTunes, I immediately downloaded it and we’ve been happily rocking out to the fun and catchy songs on “Play Along With Sam” ever since. (Twinkle, Twinkle, Little Star is still Joss’ favorite.) :)

Joss’ therapists have also wisely figured out that the best way to get Joscelyn to cooperate with their requests is to bribe her with a Sam Moran song on the iPad. :)

Today, I went to the mailbox and found this:

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A package addressed to Joscelyn all they way from Australia!

Seriously, could these stamps be any cuter??

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Adorable!

We excitedly opened it to find:

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An autographed card!

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And an autographed copy of Sam Moran’s latest CD! 

Look, Joss!

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“Hey! That’s Sam Moran!” :)

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“Look, Everybody! I got mail from Sam Moran!” 

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“I’m gonna kick back and enjoy some tunes now!” :) 

You might have noticed that the CD has “Nick Jr” at the top of it. Sam Moran is the star of a new Nick Jr show called, “Play Along With Sam“. Unfortunately, it’s not yet available in the U.S. 

If you feel led to do so, Joss and I would love it if you could send a quick message to Nick Jr in the U.S. and ask them to bring “Play Along With Sam” to us! You can do so by clicking here: http://www.nickjr.com/home/write_to_us.jhtml

We are so grateful to Sam for his thoughtfulness and generosity! Thank you, Sam! 

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Please Help Us Share Joscelyn’s Story at the Mayo Clinic’s Social Media Conference!

 

Joss

I recently submitted an essay  to win a scholarship to the Mayo Clinic‘s Social Media Conference in October. (The contest information is posted here.)

According to the contest organizers, “The Mayo Clinic Center for Social Media is offering an opportunity for patient advocates to participate in its Social Media Week at Mayo Clinic, Oct. 21-25, 2013, in Rochester, Minn. through its third annual scholarship contest for patients and caregivers. ‘We want patients and caregivers to be represented in these events,’ says Farris Timimi, M.D., the center’s medical director. “Medical professionals typically have training and travel budgets to cover the costs of conference participation, while patients don’t. Our goal through the scholarship contest is to remove the expense barrier and make it practical for highly motivated patient advocates to join us.”

Scholarships are available to individuals who have been engaged with the patient experience, either as a patient or caregiver, and:

  • have already demonstrated a strong commitment to enhancing health and healthcare delivery via patient empowerment; and
  • have not, because of financial constraints, been able to attend this type of conference.

The Center for Social Media is now taking applications for three full scholarships to its Social Media Week events, including Social Media Residency, the #MayoRagan Social Media Summit and the annual member meeting of its Social Media Health Network. The scholarships will cover registration fees and tuition for the recipients to attend all three events and also will pay airfare and lodging costs.”

My goal is to travel to the conference and share Joscelyn’s story of hope and healing with some of the most influential medical professionals in the world so that many more children with epilepsy can benefit from her experiences.

At this point in the contest, I need to get enough “Likes” and “Comments” on the page where the article is posted to be among the 15 most popular posts submitted. A “Like” is great but a “Like and a “Comment” gets counted twice. (“Comments” on this blog post are always appreciated but are not counted in the contest.) If I make it into the top 15, judges will then select the 3 scholarship recipients from those entries. Voting will continue through August 9th. (Note: You have to click the “Like” button at the bottom of the post in order for your “Like” to count for the contest. If you click the “Like” button on the side of the essay, it helps to spread the word on Facebook but it doesn’t count for the contest. Thank you!)

 Whether I win the contest or not, I already feel like a winner because of the incredible way that all of you on “Team Joss” continue to support us on this journey!

Here is the link to the essay:

http://network.socialmedia.mayoclinic.org/discussion/jennifer-dempsey-patientcaregiver-scholarship-2013?pg=1

Again, Thank you!!

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Joss is in the News Again!

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(Photo courtesy of Tom Benitez, Orlando Sentinel)

Orlando Sentinel reporter Steve Hudak wrote this wonderful follow-up story to let readers know of Joscelyn’s progress since her first surgery one year ago this week.

We are thrilled to read the optimistic comments from her doctor and positively overjoyed to be celebrating four months of seizure freedom!

http://articles.orlandosentinel.com/2013-07-07/health/os-baby-joscelyn-dempsey-brain-surgery-20130707_1_seizures-brain-joss

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Four Months Seizure Free!

Next week marks the one year anniversary of our sweet baby’s hemispherectomy surgery. If you’ve been following the blog for any length of time, you know that the last year has been an absolute  roller coaster of ups and downs, dashed hopes and false peaks but finally, after a total of 5 surgeries (and several additional hospital stays), I am thrilled to report that Joscelyn is now four months seizure free! This is the longest our little girl has gone without a seizure since she was born!

Now 2 years old, Joscelyn enjoys many of the same activities that neurotypical children her age enjoy:

“Cooking” in her toy kitchen:

kitchen

Swinging on the swing at the playground:

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Splashing in the pool:

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Visiting the animals at the zoo:

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And getting tickled by her daddy:

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Physically, she is making great (albeit slow) progress in her various therapies. She “army crawls” everywhere, sits up by herself, stands independently for a few seconds at a time, walks with assistance and is beginning to “cruise” along the furniture unaided. Though still largely nonverbal, she is learning sign language and consistently signs “All done”, “More” and “Bye-bye”. She also nods her head “Yes” and “No”.

Mostly “no” ;) 

As for her right sided weakness from the hemispherectomy, she uses her right leg nearly as well and as often as her left leg but she is still reluctant to use her right hand (aka “Righty”) for many tasks. We continue to encourage her in occupational therapy to use it as a “helper hand”. 

People often ask us how long it will be until she begins using her right hand or walking independently or talking. The truth is, we really don’t know. We believe that given time and continuing therapy, she will continue to improve and that her brain will continue to find ways of rewiring itself and creating new pathways for learning.

Our hope is that she will walk, talk, sing and dance one day- but it will be in her own way and in her own time. 

We take such joy in Joss’ every accomplishment, no matter how large or small, but we don’t want her to be defined strictly by what she does or doesn’t do.

We want her to be appreciated for who she is

And who she is, is an amazing, precious, fiercely determined, inspiring little girl! 

Four months seizure free…and on her way to a great life! 

joscelyn

 

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The Last, the Least, the Littlest

Epilepsy has been in the media several times this week but unfortunately, it’s been for all of the wrong reasons.

First, Marc Forster, director of the upcoming zombie film, “World War Z” proudly admitted to Film Journal International that he based his depiction of zombie infection on epileptic seizures:

 “I based the zombies on natural biology; I studied insects and how they move, how they swarm. From the moment the humans are bitten, it’s a seizure transformation into becoming a zombie. I did some research on epileptic seizures prior to making the film, and I incorporated this into when humans get bitten, so when someone turns into a zombie their movements are natural, but violent and seizure-like.”

Currently, 80, 95 people have signed a petition on Change.org asking Mr. Forster to apologize for his insensitivity.

Actually, his portrayal of someone suffering a seizure and then being converted to a zombie is more than simply insensitive, it’s literally dehumanizing.

Human beings cease to be human once they experience a seizure in Mr. Forster’s film. Instead, they become monsters.

But it’s just a movie, right? What’s the big deal? No one really thinks that people with epilepsy are monsters.

The big deal is that “World War Z”  will be seen by thousands of pre-teen/teenage children.

What do you think will happen when one of these children has a classmate who has the misfortune of having a seizure at school?

Do you think they’ll be more likely or less likely to feel that their classmate with epilepsy is different from them in a profound way? 

Will it make them more or less afraid of their classmate with a seizure disorder?

Will they be more or less likely to try to help their classmate during and after a seizure episode?

Worse yet, can you hear the cruel taunts of “zombie” coming from the bullies in the classroom?

I can.

For thousands of years, epilepsy sufferers have battled the idea that epilepsy is contagious.

In ancient times, epilepsy was thought to be caused by demon possession. Epilepsy sufferers were made to live alone, even kept away from other inmates housed in insane asylums for fear of spreading their disease. They were kept from attending church and up until as recently as the 1970′s, were not allowed to marry or bear children.

Today, at our local library, I came across a strange and rather disturbing autobiographical graphic novel called “Epileptic” by David B. “Epileptic” chronicles one man’s life growing up with a brother who suffered with epilepsy. In one passage, he writes of how his family decided to move from their home because his brother’s seizures were frightening the neighbors.

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That was the 1970′s! 

Not ancient Greece. Not the middle ages. Not the Renaissance.

The 1970′s.

Do you think that in the 40 years that have passed since then we’ve successfully eradicated the social stigma regarding epilepsy?

Think again.

According to a recent study by the organization, “Young Epilepsy“, one in five children with epilepsy in Britain have been accused of being “possessed“. 

One third have been told that epilepsy is contagious.

18% have been asked if they could speak to spirits.

In fact, the biggest risk to young people with epilepsy is lack of understanding

So, in an attempt to increase understanding and hopefully counter some of the negative effects of Mr. Forster’s film, I’ve decided to get a group of concerned individuals and epilepsy advocates together to pass out informational flyers to movie goers on the opening night of “World War Z”. Since the film is primarily aimed at 18-35 year olds, my goal will be to help these young people understand the following:

1) Epilepsy is NOT contagious!

2) What seizures really look like (There are many kinds and often the symptoms are quite subtle.)

3) How to help someone in your school or place of work who is having a seizure

3) Where to go for help if you, or someone you know is diagnosed with epilepsy

Human beings, by nature, fear what they don’t understand. As a result, we ostracize and mock those who are different from us.

For example,  just days ago, when describing dance moves by a radio DJ, singer Robin Thicke commented that the moves were “Fine…for an epileptic.”

Did Mr. Thicke mean to be cruel? Probably not.  In fact, I believe that it never occurred to him that his words could potentially cause harm to anyone because it’s still perfectly acceptable in this day and age to make fun of people with epilepsy.

Can you imagine someone mocking a child with cancer? Or diabetes?

And yet, when I referenced Mr. Thicke’s comment on my Facebook page recently and called the remark “insensitive”, several people accused me of overreacting.

“What’s the big deal?”, they asked.

“It was just a joke.”

“It was meant to be fun.”

If you’ve been following this blog for any length of time, you already know that there’s nothing “fun” about epilepsy. 

Having epilepsy isn’t fun. Having a child with epilepsy isn’t fun. Having your brain hijacked by seizures that can occur at any moment with very little or no warning, losing control of your body, losing consciousness, being discriminated against, being the brunt of jokes, having people tell you that your condition is contagious when it isn’t, being accused of demon possession, being called a “retard”, “mad”, “not right” (We can add “zombie” to that list now, thanks to Mr. Forster), being rejected by your peers-

None of that is what I would call “fun”.  

I guess I lost my sense of humor about epilepsy right around the time I handed my baby over to a surgeon so he could remove half of her brain in one of several desperate attempts to stop intractable seizures.

Joscelyn has been through so much in her young life. Within the four walls of our home, she is safe, she is loved and she is accepted. I know that I can’t force the rest of the world to accept her and I can’t protect her from every  insensitive comment or comparison, but I can (and rest assured I will) continue to speak up on her behalf and on the behalf of the 300,000 other children under the age of 15 in the U.S. who suffer with epilepsy.

“Any society, any nation, is judged on the basis of how it treats its weakest members ; the last, the least, the littlest.”-Cardinal Roger Mahony

Surely we can find humor and entertainment elsewhere than at the expense of our weakest members.

We can do better.

We must do better.

 

 
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In Spite of it All

 This weekend was the 11th Annual “Make ‘M Smile” event sponsored by Nathaniel’s Hope.

We attended this fun event, designed to celebrate “VIP” kids with special needs and their families, last year. (You can read about our visit in 2012 here.)

When we attended the event last year, Joss had just been diagnosed with hemimegalencephaly and had not yet undergone  hemispherectomy surgery. We were still reeling from the news and were completely unsure as to what the future held for her. I remembering stopping at almost every vendor booth and hungrily collecting brochures, business cards and flyers from therapy facilities and schools. We were filled with doubts and questions:

What kinds of therapies would she need after surgery? 

Would insurance cover them?

What if it didn’t?

Would she able to walk or would she need a wheelchair?
Would she be able to communicate with us? 
What if we didn’t get her the right kind of help?
What if we missed something?
Though we left the event that day feeling encouraged and fortified with far more knowledge than when we arrived, doubt and worry still plagued us.
One year (and five surgeries) later, we returned to “Make “M Smile”; wiser, more experienced and with a renewed sense of hope.
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(Joscelyn is making her “Let’s get this train moving here, People! Places to go, people to see!” face.)
After arriving, we headed right for the amphitheater, where “Ellis and Tyler” from christian radio station Z88.3 were hosting a concert and other performances. Ellis was leading the audience in a scavenger hunt and I won for having a receipt in my bag for something less than $2.00. (It was for a McDonald’s sweet tea, if you’re curious.) :)
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We were especially excited that Joss was going to have the opportunity at “Make ‘M Smile” to see Elmo live and in person! She adores Elmo and we were sure that meeting him would, indeed, “make her smile”. We weren’t wrong! :)
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She was thrilled!
I was crying, I was so happy!
Actually, I spent the most of the day crying. (Which you might think is rather odd considering the name of the event but there you have it. It’s been a tough couple of years. Sometimes, it doesn’t take much to get the tears flowing.)
As we were standing in line to meet Elmo, we heard Pat Benatar‘s song “All Fired Up”.
I was holding Joss, bouncing her to the music and singing the lyrics to her:
“Ain’t nobody livin’, in a perfect world,
Everybody’s out there, cryin’ to be heard.
Now I got a new fire, burnin’ in my eyes,
Lightin’ up the darkness, movin’ like a meteorite !
All Fired Up!
Now I believe there comes a time,
When everything just falls in line,
We live an’ learn from our mistakes,
The deepest cuts are healed by faith.” 
As I stood there singing and swaying along to the music, Joss just smiled and bounced right along with me,  snapping her fingers. I started crying right then, not just out of relief because my baby obviously has great taste in music but because we were enjoying the same music together. It was a typical, ordinary mother/daughter moment; mom introduces daughter to killer beats from 80′s rock legend and daughter totally gets where mom is coming from in liking it. :) One of the hardest things about having a child with a disabling condition (especially a neurological disorder) can be the inability to connect with them or share experiences with them. As parents, we all have a desire to pass on our love of our favorite hobbies, activities, books, movies, cartoons, foods, etc. to our kids. When a disability prevents us from doing that for whatever reason, it hurts.
So, “Teaching my daughter to love Pat Benatar”- Check one more item off of my parenting checklist. :)
The park was filled with bounce houses, games and other activities for the kids. Joss and Daddy made their own fun, too.
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(Joss is wearing her, “I Train Neurosurgeons” shirt. I knew everyone at the event would appreciate it.)
On the grass near us was a mother sharing cotton candy with her son. He had Down’s Syndrome and they were so beautiful and happy together that I almost asked her if I could take their picture but I didn’t want to intrude. I wondered if on the day that the doctors told her that her baby had Down’s Syndrome, she ever imagined that she would feel such carefree happiness sitting on a grassy hill with him in the Florida sunshine and sharing a cotton candy.
More tears.
Then they started playing, I Believe I Can Fly” and I literally had to excuse myself.
“See I was on the verge of breaking down.
Sometimes silence can seem so loud.
There are miracles in life I must achieve,
But first I know it starts inside of me.

If I can see it, then I can be it!
If I just believe it, there’s nothing to it!

I believe I can fly! I believe I can touch the sky!”
Last year, I hadn’t been a part of the special needs community long enough to understand or appreciate what the children and families in attendance at this event go through on a daily basis. I was still an outsider.
This year, I truly felt like I was part of the family.
Every emotion of the last year- the grief, the hope, the defeat, the struggle, the determination, the fear, the uncertainty, the  joy and relief-washed over me. 
I looked around me at the sea of faces in the crowd and I thought that all of us owed a great deal of gratitude to the  founders of Nathaniel’s Hope, Marie and Tim Kuck.
Marie and Tim Kuck’s precious son Nathaniel was born prematurely on June 6, 1997. He was diagnosed with an undiagnosed syndrome which led him to have multiple birth anomalies including Duodenal Artesia and Craniosynestosis. The Kucks spent the next several years lovingly caring for Nathaniel in and out of the hospital until, at the tender age of 4 1/2, he, as his parents say,  “Relocated to 777 Heavenly Lane”. 
Marie and Tim could have retreated from the world. Certainly, no one would have blamed them. But instead, in Nathaniel’s memory, they committed themselves to reaching out to special needs families.
They could have easily turned bitter at the unfairness of it all, not only because of Nathaniel’s condition but also for having to say goodbye to him at such a very early age. Instead, they let their experiences as special needs parents soften them. They allowed their struggles with Nathaniel to make them more compassionate, more giving, and they continue to use their pain and their struggles to comfort and assist other families going through similar trials.
I was thoroughly and completely inspired.
By far, the most moving part of the day was the butterfly release ceremony held in honor of VIP kids who had passed away. 
Some of those children had attended the “Make ‘M Smile” event with us in 2012 but are no longer here.
I couldn’t help but think of Nick, of course.
My heart was already tender and to look up on the stage at the tear-stained faces of the bereaved parents, each holding an envelope containing a butterfly waiting to be released in their child’s memory, just wrecked me. I heard Marie say that while all of us were having so much fun at the event that day, it was nothing compared to how much fun our kiddos were having in Heaven. 
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As each of the butterflies were released, singer Heather Williams sang her powerful song, “Hallelujah” and gave her testimony which included losing her own sweet son to a heart defect.
Afterwards, she wrote the following:
“On my knees here I fall.
In spite of it all,
Hallelujah! 
And though it seems hard, I’m still trusting you Lord.
Hallelujah!”
In spite of it all…Marie and Tim Kuck held tightly to their faith and created a ministry that helps thousands of special needs families every year.
In spite of it all…Heather Williams continues to use her gifts and talents to bless and encourage others struggling to understand and overcome the difficulties and trials in their life.

In spite of it all…We can each use our pain, our disappointments, our losses and our struggles to bring hope and healing to a hurting world.

In spite of it all, we can help someone else find their “Hallelujah” again.
Hallelujah.

 

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