Tag Archives: Georgia

What’s blowing my mind tonight?

So glad you asked. What’s blowing my mind is that it is so hard for sick people to obtain medical cannabis when THESE are the kind of people that oppose it.

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And my personal favorite from Captain Creeper who apparently is stalking me even though I wasn’t featured in the WSB story under which this was posted:

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Yep. That’s me. Magnum PI(diot) found me out.

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Update–My little friend’s real first name appears to be Darin and he’s dating someone named Jessica Callahan. It’s hard to fight the temptation to swing by her workplace (on her profile) and ask her if she knows what a POS he is. He appears to be in the NW part of the metro Atlanta area (Cherokee or Cobb, maybe Woodstock or Kennesaw) with several connections to people that went to Pope High School. And I’ve satisfied my curiosity about what he looks like thanks to her page. Here’s his Facebook with his racist rants and if you’re curious about his pictures, check out his girlfriend’s page. And if you know who he is, please let me know.

And I guess this is why I get the pleasure:

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Another update : Think I’ve found him AND his mug shot. You’d think someone so opposed to marijuana would have a clean record 🙂

 

 

When will Georgia’s medical cannabis refugees come home?

In the months since Georgia’s 2014 legislative session ended without passing proposed medical cannabis legislation (due to political games, not lack of support), the community of medical refugees in Colorado has grown.

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Notice anything funny about the south? Sing with me! One of these things is not like the others… Admittedly, the laws in the bordering states are of varying efficacy. South Carolina, for example, is only an immunity law that protects you if you are caught with high CBD strains, but does nothing to help patients obtain it. Florida, on the other hand, is allowing for the  growing and selling of high CBD strains next year. If Amendment 2 passes in November, Florida will be able to enact an even more comprehensive program that will benefit more people and conditions.

So now meet some of the Georgia families that are waiting to return to their homes, families, doctors, therapists and friends.

The Cox family

The Georgia bill HB 885 was also named Haleigh’s Hope in honor of this little girl who turns five this month. Shortly before this year’s legislative session ended, Janea and Haleigh packed up and moved to Colorado because Haleigh, who has Lennox-Gastaut syndrome, was suffering life-threatening seizures that caused her to stop breathing. Her dad, Brian, was unable to go with them because of his job and now they have to live apart.

Haleigh before. 
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Haleigh after.

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As I scrolled through the Hope for Haleigh page I was struck again by the change in her. Janea takes and posts a lot of pictures and I could see the improvement, but in looking for before pictures, I was struck by how difficult it was to find photos of her looking at the camera or smiling. Now we see quite a few of those. Sitting in a swing by herself wasn’t possible a few months ago. She also said her first word in Colorado — Mama. Haleigh is not seizure free and still has some rough days, but she has also had some seizure free days. That simply didn’t happen before she started on Haleigh’s Hope provided by the Hope Foundation. Janea has said that she felt like she was finally meeting her child these last few months. Haleigh has even been able to wean off one of her seizure medications. But living apart from Dad is emotionally taxing and they hope that 2015 will bring legislation that will allow them to be a family again.

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The Oliver family

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Tripp had his first seizure on April 9, 2009 and was diagnosed with Dravet syndrome. He has tried more than a dozen medications since then and in April of this year, he and his mom moved to Colorado where he started THCa through Realm of Caring. It was hard to leave Dad and his team of therapists who have spent years working with Tripp in speech, occupational, feeding and physical therapy, but since then he has had two separate three-week streaks in which he had no convulsive seizures. Mom describes him as brighter and happier with improving speech capabilities. You can follow his journey at Tripp’s Trip.

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The Klepinger family

The Klepingers left for Colorado late last year. They still own their Georgia home with the hopes they can return to it and their extended family and support network. Hunter is still doing well on Charlotte’s Web. I shared Hunter’s successes previously in this post. Since then, Aaron and Dawn have a welcomed a third child, lovingly nicknamed their Colorado Tumbleweed.

Julian, Chase and Hunter.
Julian, Chase and Hunter.
Hunter with Rep. Allen Peake, sponsor of Georgia's 2014 medical cannabis bill. Peake flew out to Colorado to meet the families.
Hunter with Rep. Allen Peake, sponsor of Georgia’s 2014 medical cannabis bill. Peake flew out to Colorado to meet the families.

Aaron invites any legislators with doubts to come to Colorado and meet the kids. “Seeing is believing,” he says.

The Clark family (follow them at Hope for Caden)

“My Caden has had thirteen completely seizure-free days! Understand that was never a possibility before! He no longer seizes during the daytime at all, only at night,” Kim Clark posted in May of this year. “There was no hope before this, nothing. Caden’s life was seizing somewhere between ten up to into the hundreds times a day. There was no life. Coupled with the side effects from medications, my boy was miserable. Now we are so blessed that he is 10 years old and we are trying to learn how HE CAN LIVE!”

Kim posted this photo recently with the caption "Slowly healing."
Kim posted this photo recently with the caption “Slowly healing.”

But Caden’s healing has come at a price. The Clarks are also a split family. Kim is in Colorado with the kids and Dad Chris has had to stay behind in Georgia for work. They share the same reality as the other families living hundreds of miles apart. Dad can come visit them, but they can’t go home to see him because they can’t legally travel with the oil. Recently, Kim and Chris traded places for a short period so she could make a trip home.

Kim sits on the front porch of her Georgia home, possibly for the last time, as they plan to put it on the market due to the expense of maintaining two households.
Kim sits on the front porch of her Georgia home, possibly for the last time, as they plan to put it on the market due to the expense of maintaining two households.

The Sumlin family

Sheryl and her daughter Trinity arrived in Colorado earlier this summer.

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It’s early to gauge the response of Trinity’s seizures to Haleigh’s Hope since mom opted to titrate up to the usual starting dose, an incoming tooth is causing seizures and Trinity is requiring supplemental oxygen as she adjusts to the altitude. However, Mom is seeing beacons of hope in small things like wiggling her toes, calmness, awareness, making sounds and sleeping better.

But leaving her support network has been extremely tough. “It is harder than I thought it would be,” Sheryl says. “Although it’s beautiful here, it is not home. My daughter’s school and that whole network has been a huge part of our lives for the last 5-6 years. Also, friends who knew us since forever. I think it’s unfair that we have to move so far to have an opportunity to try this medicine.”

The first dose.
The first dose.

Sheryl is out there without nursing help or a car. Prior to flying out she donated her vehicle to another family in need. A fundraiser was set up by a third party to help her with expenses, but she never received any of the donations that were made on her behalf. She is grateful to the Journey of Hope foundation, a non-profit started by Rep. Allen Peake,  for coming through and helping her financially with the move.

The Lowe family (follow them at Paws for a Princess)

Corey worked tirelessly during the 2014 legislative session to persuade Georgia legislators how badly we need access to cannabis. She was devastated when it didn’t pass, and by May, her daughter’s seizures were getting out of control. She had a tough decision to make.

Interviewing with CBS 46 about their impending move after Victoria was admitted to the hospital.
Interviewing with CBS 46 about their impending move after Victoria was admitted to the hospital.

In June, with help from Journey of Hope, they packed up the car and drove across the country leaving behind Corey’s job, her husband and Victoria’s siblings.

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Since starting on Haleigh’s Hope, Corey tells me Victoria has had an 80 percent reduction in seizures. From several a day to this:

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The incredible eye contact and improved communication Victoria is showing now helps alleviate the pain of leaving their home, but Corey still worries.

10564845_10152238336840905_49063206_n“It’s great, but at what cost,” she told me. “How will this affect my children, who I left behind, in the long run? Will they resent Victoria because I had to leave them behind? How is not having a mom around affecting them?”

She also feels guilty about the families that simply don’t have the means or circumstances to move across the country. “The absolute worst part about having this medicine is seeing kids back home that need it. It’s hard to celebrate the success when kids are going into the hospital because of seizures.”

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The Klepinger, Clark, Lowe and Sumlin family sharing their 4th of July celebration in Colorado.
The Klepinger, Clark, Lowe and Sumlin family sharing their 4th of July celebration in Colorado.

 

 

Related Posts:

The Side Effects of Medical Cannabis

U.S. Representative John Fleming Is Out to Prevent Access to Medical Cannabis for Our Kids

 

I got soaked at the Hose the House fundraiser for Journey of Hope.

This last week did not get off to a great start. I’ve mentioned we’ve had some issues with an increasing number of seizures breaking through in spite of the modified Atkins diet. We finally bit the bullet and raised his vigabatrin dose Tuesday night when not only were we seeing him have 2-3 a day of his typical seizures, but then he also appeared to be having some sort of activity with no clear stop and start — he just wasn’t right. His eyes would look unfocused and he was physically weak. Sometimes after a rough seizure he has trouble moving around and his arms can’t support him when he crawls, but that’s not always the case and it usually goes away in 30 minutes. But he was like this for three days. I had hoped the diet would be successful enough to allow him to wean meds, but it appears he needs the combination of a therapeutic dose of vigabatrin with the diet. He had gained five pounds since the last time we adjusted his meds, so clearly vigabatrin is just far too essential to his well being. We have now gone four days without seeing any seizure activity since the upped dose and he’s back to his normal active self — a great relief as the idea of possibly having to relocate to Colorado had started rear it’s ugly head again. We are trying to hold on with traditional medicine until the option of medical cannabis is available closer to home.

After all that, it seemed like an appropriate way to end the week by taking part in the fundraiser for Journey of Hope, a charity started by Rep. Allen Peake (who sponsored HB 885 this past session in an unsuccessful attempt to legalize CBD oil here in Georgia) to help families, who have exhausted traditional medical approaches to treating their children’s seizure disorders, relocate to Colorado to get the medicine they need. It all started several weeks back when Kim Clark challenged Corey Lowe to the cold water challenge, a method of raising money for charity via the Internet that has gone viral recently. Kim (a mom from Georgia treating her son Caden in Colorado) challenged her on behalf of Realm of Caring, the nonprofit that has become famous for providing the strain Charlotte’s Web to sick children at a reasonable cost. Corey (a mom from Georgia who will soon take her daughter Victoria to Colorado) chose to challenge more people on behalf of Journey of Hope which started the chain of events that led to me floundering my way into an inflatable pool ring in an Olympic sized pool Saturday morning in the Hose the House for Hope event.

Several representatives, senators and Georgia law enforcement officers accepted the challenge to raise money and participate, jumping into the pool to swim out to the moms from families that were involved in fighting for HB 885. You could also pay $50 to douse a participant of your choice in ice cold water. Oh, and some of the dads dressed up…but I’ll let the photos do the talking on that.

I am happy to say that this much money has been raised so far:

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If you are interested in making a donation, please check out the web site for more information — Journey of Hope.

Most of the photos are mine, but a few are borrowed from Facebook…please let me know if you want credit for a photo. I didn’t pay attention when I snagged them 🙂

I'm impressed my pasty white legs didn't blind anyone.
I’m impressed my pasty white legs didn’t blind anyone.

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Oh, and those dads I mentioned…

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I agree to jump through your hoops. Can’t you just agree to just hold them steady?

I had the most ridiculous morning Friday thanks to the Georgia Department of Human Services. I am unconvinced they know the definition of either “human” or “service.”

It started Thursday evening. I received an automated phone call from them informing me that they had tried to mail me something on behalf of Connor, but it had been returned to them due to an incorrect address. Since it must relate to one of the programs Connor has qualified for, either Katie Beckett or HIPP, this concerns me. We’ve changed our address with them, but whatever, right? I was given two numbers to call the next day — as it was after seven (thanks for making me worry when it’s too late to do anything) — a local and a toll free.

Friday morning around 8:30 I attempt to call the local number. Call fails, so I call the toll free number. I spend seven minutes, according to my phone log, trying to navigate the automated system to get a person. I end up trapped in a dead end when I make a selection for which I don’t have the information to input that they want. So I hang up and call again. I try hitting anything to get a person. After I slam my phone down still connected, Chris takes it and successfully gets a person on the line who informs him that she can see us in the system, but she doesn’t know what was mailed. She gives us another number to call.

I call it. Then I spend almost 45 MINUTES on hold. In the time I wait, I give Connor breakfast, get dressed and carry my phone and Connor’s KB Medicaid card around the house with me in case they need his Medicaid number. When she finally picks up, I realize I’ve left the card somewhere and I have no idea where. She’s asking for his social or some other number. I am already about to lose it, so I’m shrieking, “Shit! I had it the whole 45 minutes I was on hold and now it’s gone!”

She keeps telling me to give her some other identification number I don’t have, so I run up to Chris to get Connor’s social security number that I so desperately need to memorize, but agencies like this have left no room in my brain to keep it, and I give it to her. She keeps asking me for some other number and I tell her I don’t know what she’s talking about. At this point Chris takes the phone and goes off. He basically has to tell her to shut up and listen and use the social security number. A total of 49 minutes was spent only to be told, again, that she can’t see what was mailed to us either. Call your local agency.

By now, I’m late taking Connor to music therapy and about to have an angry, ugly cry meltdown because my morning has been ruined, my happy baby trying to get my attention to no avail, all so I can return a phone call to an inept agency when I don’t even know if it actually matters or is important.

Well, we’ve been getting our monthly HIPP checks with no issue. And I sent in all the paperwork for Connor’s Katie Beckett renewal last week. KB is the only thing up in the air, so in order to save my sanity, Chris makes the call to our local agency and to Connor’s caseworker leaving a voicemail to find out if she has received the paperwork and if she knows what was returned to them to trigger this auto call. Well over an hour spent returning a phone call and I still don’t know what the problem is.

This is after the recent ordeal of renewing Connor’s Katie Beckett Medicaid. KB is a fantastic program. It provides a secondary insurance to kids who have private primary insurance and major medical issues, but it is not based on income. It helps cover costs that are not covered by our primary insurance. We first applied last year with the help of Connor’s early intervention caseworker. The application is a lot of work and a lot of information to gather, but worth the end result. Then the letter came that it was time to renew. We were directed to fill out an online application. We were naive and new to the game so we did it. Several weeks later, we received a denial stating we hadn’t submitted all the requested information. I quickly garnered in FB support groups that 1. it’s better to have them send you the full paperwork packet all together — the online form consistently spells trouble as it’s not really intended for KB recipients, and 2. even if I do fill out the online form, I should then receive a packet asking for additional information, doctor forms, and — naturally — a lot of the same information already asked online. We never received the packet. Just a rejection. I started trying to call for help. You know what you get? A lot of voicemail boxes. Boxes that are full. The denial letter offered me the opportunity for a hearing — you know, in a court. With judges and lawyers. I don’t pay anything out of pocket, except as a taxpayer. Like you. All to get a benefit for which my son no doubt qualifies. I learned in the support groups that this is very common and that you pretty much always get it on appeal at that pesky additional cost to the taxpayers. Then I speak with someone else who advises getting in touch with Connor’s caseworker and seeing if she’ll just give me an extension. Once I finally get the VM when it’s not full, I finally can leave a message which results in the needed extension. We currently await the results of our completed renewal application.

This renewal will happen every year even though Connor has an incurable condition. That’s how it is for everyone.

I’ve been hesitant to be critical of programs that I am so grateful for. We’ve been very lucky in Georgia. I read terrible stories in my support groups of people in other states trying to get their children into the early intervention programs and being wait-listed (which defeats the entire purpose of EARLY intervention), some states  have Katie Beckett wait lists so long the kids age out before receiving benefits and HIPP — which is a huge financial support for Connor — isn’t available everywhere. He receives KB and HIPP because our family has too much income for him to qualify for social security disability.

I agree to jump through your hoops. Can’t you just agree to hold them steady?

I have filled out your paperwork and gathered your very specific requirements of what kind of specialists must provide evaluations of my son (ironically, this leads to you considering an evaluation from someone who saw him once to a much higher value than anything submitted by his regular doctors and therapists that see him all the time). I have made the drives back and forth to the office when my carefully organized packet still turned out to be lacking something.

If we screw up, the penalty for our kids is huge. That’s why we parents jump these hoops. That’s why we give each other tips in support groups. That’s why countless parents lose sleep every year when KB and HIPP renewal rolls around.

Yet the hoops keep moving and changing. Full voice mails, directions to call numbers where no one can help, paperwork not being sent, paperwork being sent minus essential forms, required forms not being available online, people having to go to hearings when if the process was clear and streamlined, it wouldn’t be necessary. You have made it impossible to return a simple phone call.

How much taxpayer money is wasted on these inadequacies? I’ve heard more people are losing benefits as the belts tighten. Maybe if this system worked, more money could be spent helping people. I’m more than happy to submit the proof you need, but perhaps we can agree that an annual renewal for kids who have incurable conditions is excessive? How much time and paper and manpower could be saved on that alone?

Truly, Georgia, I appreciate these programs. I don’t feel entitled. I feel grateful. But special needs parents have to reserve our energy and sanity for more important things.

I need my energy to stay positive on the days when Connor has a setback with his seizure control and wakes up with a violent tonic clonic.

I need my energy for being patient while waiting for my 2-year-old to say his first word.

I need my energy for carrying my 2-year-old who WILL walk…but isn’t YET.

I need my energy for mixing meds twice a day.

I need my energy to fight a government that thinks my child’s access to medical cannabis should be based on his zip code.

I need my energy to keep track of 4- 7 therapy appointments a week.

I need my energy to coordinate an MRI and doctor’s appointment in a very narrow window of when we will be in Boston for a TSC study and when his doctor is actually available.

I need my energy to make multiple follow up calls to hospitals and doctors to remind them they should have billed secondary or that they never sent a form I asked for three times already.

I need my energy to trouble shoot my son’s medical diet for seizures and figure out why it isn’t working as well now as it was in the beginning, and also to force him to eat when he doesn’t want to, because not eating = more seizures.

 

You see, I simply don’t have anything left for you. I will fill out your forms and collect your documents. I will meet your deadlines. I will provide you whatever evidence you need to believe that my son has an incurable genetic condition that causes seizures and developmental delay. But that’s all I have to give. The energy supply is gone. I can’t sit slumped in the waiting room of music therapy, drained from trying to return a phone call.

Please, please stop moving the hoop.

 

A Parallel Universe

Second Annual “Blogging for TSC Awareness Month” Day 29

by guest blogger Sara Weathersby  (Decatur, Georgia) 

At a UGA football game circa 1999.
At a UGA football game 1998 or 1999.

Unlike many who have blogged about TSC, I am not diagnosed with it or caring for someone who has the diagnosis.  I became aware of TSC and the havoc it wreaks through my friends Becky and Chris and their son Connor.  Becky and I went to college together and remained friends in the following years.  We were delighted to find out we were pregnant at the same time.  Connor was due just a month before my second son, Malcolm.  My older son, Max, was a young toddler at the time, so I would share product recommendations and advice with Becky over the next several months.

One day, Becky told me that the doctors found something irregular with Connor’s heart on an ultrasound and were going to observe him more carefully and call in a specialist to examine him once he arrived.  I honestly, confidently believed with every fiber of my being that the doctors were being overly cautious.  If ever there’s a time for doctors to be so cautious, it is certainly when the health of a baby, particularly my friend’s baby, is at stake.  Neither of us were very worried as we talked about ponytail holders and chapstick going into the bags to go to the hospital.

When Connor was born, Becky and I texted back and forth.  The delivery went well and she and Chris were just waiting for the nurse to bring him back to them after some observation.  They waited to hold and cuddle their precious new son.  I waited for the obligatory pictures to pop on my phone.  They waited to gaze into his eyes and memorize every inch of his perfect face.  I waited to hear once and for all that everything was great.

Becky's wedding reception 2010.
Becky’s wedding reception 2010.

But it wasn’t great.  While in the nursery a nurse noticed Connor was having a seizure.  While Becky and Chris waited, the nurses and doctors were trying to figure out what was going on with Connor and how to treat him.  They diagnosed him with TSC and kept him hospitalized for a month.  They determined that he would need neurosurgery to remove a tuber from his brain to hopefully stop the seizures.  The doctors expected him to have developmental delays but didn’t have a clue what that would look like.

This is not the kind of thing that happens to me or my friends.  We work hard, pay taxes and make good choices.  How could this be happening?  How could someone that I know and love have to go home from the hospital without her baby?  What could I possibly say to Becky and Chris?  I certainly had no “been there, done that” mommy advice to offer.

Somehow, Becky and her family were absorbed into some kind of parallel universe where you don’t get to room in with your newborn and take him home to his new nursery in a day or two.  Instead, my friend stayed at the side of her baby’s incubator surrounded by tubes, wires and machines that allowed the doctors to best figure out a plan for his treatment.

Meanwhile, I’m waddling around, near the end of my own completely healthy pregnancy with my completely healthy son.  I wondered what in the world I had to offer this friendship while Becky was going through so much.  I felt a strange sense of guilt and sadness.  All the while I shared in Becky and Chris’s joy that their son was born.

Sara's wedding 2009.
Sara’s wedding 2009.

If I was feeling all these emotions, how much more intense it must have been for Becky and Chris!  I grieved for all the expectations, spoken and unspoken, I had for this new phase in my friendship with Becky. We were both moms now and our sons were supposed to play together.  But what now?  How was TSC going to change our friendship?  I determined that it was better to show up not knowing exactly what to say or do and risk putting my foot in my mouth than to do or say nothing.  Becky and Chris sat in that parallel new parent universe where nothing comes easy.  They were so sad that Connor was having seizures and had been diagnosed with TSC but yet overjoyed to have a son.  They were devastated that there son is not typical but hopeful that his growth and development will come along such that TSC will not put any limits on what he can do.

In the universe I’m accustomed to of course parenting is tough and an emotional roller coaster.  In the parallel universe where Becky is, it seems more intense.  There are more doctors and appointments to keep, more worry, more money to spend, more resources to find.  Everything is just more.  Meanwhile, my own little one made his way into the world and disrupted everything in just the way you expect.  How do I step into this strange place where Becky and Chris are without sounding trite or lacking compassion?

It actually turned out to be pretty easy to be maintain our friendship.  We just kept texting and talking about our boys.  Connor’s milestones look different

Connor in the cow costume, Malcolm as the monkey, Max as the big pirate, and their friend David the pirate.
Connor in the cow costume, Malcolm as the monkey, Max as the big pirate, and their friend David the pirate.

from Malcolm’s.  Connor has to work so much harder to get from milestone to milestone, but he’s doing it.  I was afraid Connor’s diagnosis would put awkwardness in my friendship with Becky because I just wouldn’t understand how different it is to parent a child with special needs.  When the boys play together (as much as they do as young toddlers) it’s clear that Becky and I have a lot more in common as moms of toddlers than there are differences in parenting a special needs child and a typical child.  The fact that Connor has special needs actually didn’t alter our friendship all that much.  Perhaps that’s because Becky and Chris love Connor so completely and have managed to accept that TSC is a part of their lives now.   They haven’t let TSC cast a shadow on their lives or rob them of the joy of parenting.  They have made it easy to ask questions about TSC and what it means for Connor.

As the months went by, I started to realize the idea of the parallel universe where families with special needs children live wasn’t really accurate.  We buy the same diapers, and clothes for our kids.

Malcolm doesn't mind crawling around with Connor, even though he can walk already.
Malcolm doesn’t mind crawling around with Connor, even though he can walk already.

We live with the same healthcare system.  Instead of thinking of families with special needs children living off and away somewhere doing mysterious special needs things they don’t want people like me bugging them about, they’re actually at the same Target store I go to.  We live in the same world but unless you know someone whose child is ill, you can keep going along in your own circles and never hear the stories of these families and their precious children.

In Georgia, we recently had an opportunity to legalize medical marijuana for children with seizure disorders.  Our state representatives failed miserably to pass the very popular bill.  This experience made it clear to me the importance of raising awareness of TSC and the reality faced by families with special needs children.  Just because a policy, or law or healthcare plan works for you or at least doesn’t hinder you doesn’t mean that you don’t have a voice in improving the lives of our most vulnerable children.  Those of us who are blessed with healthy children owe it to our friends, relatives and the people in our communities who are raising special needs kids to keep investing in those relationships even when, and especially when, a child is diagnosed with an illness or syndrome.  We can make our healthcare system work better and our government more responsive.  But first, we all have to be aware.

In the dorm -- Myers Hall at UGA -- in 1998.
In the dorm — Myers Hall at UGA — in 1998.
Both pregnant at Becky's baby shower 2012.
Both pregnant at Becky’s baby shower 2012.

 

I never thought I would be writing this story. I never thought we would be living it.

Second Annual “Blogging for TSC Awareness Month” Day 25

by guest blogger Becky Ruppe  (Cumming, Georgia)


photoI will start off by saying how hard it is to sum up our journey as it is a never-ending battle and the past seven months seem like years. Our story with Tuberous Sclerosis Complex 2 begins with twins, after many times trying to start a family and after trying everything; as soon as we stopped trying, we were blessed with twins. We were so happy, but we would soon find out; everything was not as it seemed. As time progressed in the pregnancy, his twin sister passed in the womb from another rare disorder, Trisomy 13. Not long after all that, on ultrasound, the doctors found tumors in our son Ben’s heart. We were devastated by this news and still recovering the loss of his sister.  That day was tough and the first time we had ever heard the words Tuberous Sclerosis. I remember thinking there is no way we could have two rare things, but as time progressed more tumors popped up on ultrasound and we were told our son Ben had an 80% chance of having TSC. He had more than seven tumors in his heart and one that should have been blocking his outflow; it kept growing and growing. It was honestly a miracle that he was surviving, as the one blocking his flow was so large. We found every day was a challenge emotionally and we had nothing left to do but to pray for a miracle that we wouldn’t have to do an emergency c-section to try to save his life with open heart surgery to remove it.

We had fetal MRIs to look for tumors in his brain, but nothing showed up. Finally on October 23 we gave birth by c-section to our son James Benjamin Ken Ruppe, he went straight to the Nicu when born, he was not eating and was given a feeding tube and was given medicine to keep his blood flowing through his backup channel in his heart. We stayed hopeful, but by day three they did an MRI and we were walked into this tiny room and given the findings of his MRI. I remember that walk like it was yesterday, I had tears before we even made it to the door. They found multiple tubers and nodules in his brain and was given the actual diagnosis of TSC. It was heart wrenching, the hospital made it seem as though it was a death sentence, we had him baptized that night. We were clueless what was going to happen, would he need heart or brain surgery, would the medicine continue working, would he start having seizures, so many questions not one doctor could answer. Then two days later; our son Ben was able to come home. We followed up with three doctors the week we came home. It was overwhelming, scary and honestly I don’t know how we made it through all that.

Since giving birth, most of his tumors have reduced in size in his heart and he is currently in therapy once a week for muscle loss due to his TSC. He started photo-1having seizures New Year’s Eve and ironically those seizures did not show up on his EEG. He has had several EEGs,  and the seizures have become more frequent. About two months ago we were told his EEG reflected localization epilepsy with focal onset seizures. It has been really horrible to watch him go through all this. Every EEG brings tears for our son.

Thankfully, when we found out about the possible diagnosis of TSC, I reached out to the Tuberous Sclerosis Alliance and have met a really great support group. We also enrolled our Ben into two studies that we travel to Boston for.

Most recently we noticed Ben started to drop his head and we called his neurologist and went into the hospital for a VEEG.  Within an hour and half of him being hooked up, the doctor came in to tell us he was in fact having infantile spasms. The funny thing was that they give you this button to push every time he has an episode. I pushed the button twice during that hour and half. What I found out later, was that he had multiple spasms and clusters and other seizures that I did not even recognize. I will say it was very frustrating that nobody came in and showed me on the video — this is a spasm, this is a seizure. I was told by the Children’s Hospital in Atlanta that they do not have the medication Sabril, which I understand is the best med of choice to treat Infantile Spasms. This to me was a load of crap. How can you not have this medicine and why did we have to wait to get our son the best treatment when from day one we were told that Infantile Spasms can be deadly?

They said I had to wait and get it from his doctor’s office and they sent me home with Klonopin. He was already taking Keppra for complex partial seizures.  Thankfully, his local neurologist Dr. Flamini got us the meds in two days, but in my mind it was still unacceptable to be sent home without the best meds for his treatment.

Since coming home from the hospital Ben is having probably close to 70 + seizures a day.

We have increased some and lowered others of the meds he is taking. We are currently on day 4 and waiting for a change. His spasms have changed into something completely different, with the occasional head drop.  Now looking back, when Ben was 8 weeks old, he was extremely colicky. We took multiple videos and were always told it was nothing and that he was fine, but I know now, judging from his current colicky status (Infantile Spasms) that he was in fact having IS and or some seizure activity as a baby and because his EEG was not showing it and based on opinions of doctors, we delayed treatment. I also know that his infantile spasms are not the normal spasms you would see. They are not as defined and often rotate from one side to the other.  We also were told recently that he has multiregional epilepsy and that he is not the best candidate for surgery.

If I could go back, I would have started medication sooner, because who can help but wonder what damage has been done.  In five days, my son went from having excellent head control to having very little and he also went from being able to stand and put weight on both his legs to not being able to do that for more than a second.

This past Saturday we called 911, as Ben had a seizure that lasted over 20 minutes. The EMS came and they said his heartbeat was fast, but everything else was good and we just continued to watch him per his local doctor.  I am not sure how everyone else feels about giving your baby medications, but giving my Ben three medications twice a day is a struggle. It is hard… every time I have to mix it, I have to take a deep breath to get through it.

I will never give up on my Ben. My husband and I are in a constant struggle with acceptance, and no matter what people say, it is sad and it is hard. There is nothing that can describe watching your son, your sweet innocent baby boy, have seizure after seizure and all we can do is sit back, love him and watch. TSC is the worst pain in the world to us. We aren’t giving up, but we are giving in to the emotion that we are allowed to feel pure anger and a little helpless at times, as there are limits to what we can do for him — the rest is up to somebody else. I hate every second of every day that I have to watch him suffer.  Many will say that is not a way to live — nope, it is not — but it is our truth. We still check him to make sure he is breathing and we are still living and fighting and find massive amounts of joy in everything else our sweet Ben does — when he smiles and when he loves. Our relationship with TSC is completely unavoidable and that is what makes it suck and it is what it is.

Each day we face TSC, we face many challenges emotionally and financially and many sleepless nights. We want a cure so bad it hurts. You are never prepared for the what ifs. I never thought I would be writing this story. I never thought we would be living it. I never thought I would be giving our son three medications that make him totally not himself. I never thought I would be learning a whole new language. I thought I would be going somewhere completely different. I thought a lot of things. I have wanted to be a nurse my whole life, and I have wanted to be a mother my whole life. I thought so many times I would go to nursing school. I know now that that feeling of wanting all those things is now my reality, I got what I want and wouldn’t trade it for anything,  I am right where I am supposed to be. I thought having a child would be so different and that we would play normal people, but turns out we are, it’s just our normal day to day is just a little different than others.

I love every minute I have with my precious Ben, I love that I have been able to jump right in and take care of him. I love that I can make him smile. I love that my husband is such a great father and husband to me. I know that TSC affects us, but it also affects our friends and family, as they are constantly in this battle with us. We are thankful for all the support we have been given, by the TSC Alliance, the TS Mommy site, Dr. Flamini and all the doctors he sees.

photo-2We don’t know how the next year is going to go, we don’t know if he will stop breathing tomorrow from a seizure or if the next seizure will be the one that slows his development even more. Will he need brain surgery? Will his kidneys be affected? Will he be able to have children? Will he learn to walk and throw the ball? All the simple things in life; we are left wondering and hoping. We don’t know what kind of life he is going to lead yet. Will we as parents be able to afford the best treatment for him? Watching our son have seizures is something you can’t describe, there are no words. I do know that my son saved my life. If it was not for him, I am not sure I could have made it through the loss of his sister. So, now my husband and I are giving our life to him. I know now that his sister is in Heaven watching over Ben and our family and not a day goes by that I don’t think about how our life would be if we still had her with Ben, but I know now that that happened for a reason. Ben needed his extra Angel and she will take care of us and watch over our family.

We find great comfort with every second we have with him and every morning we wake up to his smile. The light at the end of our tunnel is holding onto hope that research in finding a cure for TSC 2 is continued and that one day there will be more options for treatment for our son and maybe soon medical Cannabis Oil will be legal in the state of Georgia, because after giving my son all of these  harsh medications, I have no doubt that I would choose that first before any of this stuff he is on currently.

My family is the best family in the world. We will never give up and we will fight every day.

Our story with TSC 2 will continue  and one day I hope we can look back on all these hard days and say, We showed you TSC… We showed you…

 

It’s not all about the TSC.

Second Annual “Blogging for TSC Awareness Month” Day 24

by guest blogger Sarah Gray  (Atlanta, Georgia)

Mary Stuart, 16, Julia, 14, Jackson, 12 and Millie, 8
Mary Stuart, 16, Julia, 14, Jackson, 12 and Millie, 8

I have four children, who are mostly a joy and a delight, despite their collective inability to clean up anything. We spent three years dealing with miscarriages and infertility (“the dark years”) , and my husband and I are incredibly grateful to be parents to the big family we always wanted. That’s not to say we haven’t had our challenges!

Our first child arrived perfectly on her due date, and was a ridiculously easy baby. Hardly ever cried. I nursed her exclusively for five months and for a total of 9 months. We had her head x-rayed at age 2 or 3 or 4- I can’t remember much with my addled brain- because her soft spot hadn’t closed up, but it turned out to be just a weird thing. She never crawled on all 4s; she went from commando crawl to walking at 16 months. When she was older she had pretty strong sensory issues, and could not stand to have any tags in her clothes, which made it tough when I was handing things down and couldn’t figure out what size anything was. In typical oldest child fashion, she is a perfectionist and has a lot of stress, but we are surviving teenager-hood and she is finishing her sophomore year, in mostly honors classes, at a competitive private school.

Our second child was really active in utero, and partly because of that, we were shocked when she arrived and wasn’t a boy! She was a pretty typical baby, and a hilarious toddler. I nursed her exclusively for about a month, and a total of 5 or 6 months. She walked at 15 months and was clumsy- she had a perpetual bruise in the middle of her forehead. She was late to talk in sentences, but after some speech therapy caught up with a vengeance and was chided for talking too much in Kindergarten. She is a star in a local junior dance company, and I can’t believe I have a child who can dance in toe shoes, since I am so uncoordinated. She is completing 8th grade at the same school, in mostly honors classes and on honor roll.

Our third delivery was really fun because we had the “It’s a boy!” moment when he came out peeing all over like a loose garden hose. I nursed him for about 4 months maybe? He was a great baby; walked at 17 months just before we were going to start worrying. He had sensory issues that we noticed from about age 1: he wouldn’t eat frosting or ice cream, didn’t like finger foods that made his hands dirty, and as a toddler wouldn’t walk on bark playgrounds with sandals on. At age 4 he was flagged for OT in preschool. In first grade we had him evaluated, and he was shown to have many deficits which I can’t really describe, but I remember when she blindfolded him and held his head he got really uncomfortable. He loved OT, but after 3 years of trying to make his hands stronger so he could write legibly and without pain, I gave up and asked his teachers to let him type his assignments. He’s finishing 6th grade at the same school as his sisters, doing very well academically, but has OCD-like tics like playing with his fingernails, and still doesn’t eat frosting or ice cream! He plays basketball all 4 seasons of the year.

Number four is an adorable, somewhat spoiled youngest child- the only one with light hair and her daddy’s beautiful blue eyes. I got really sick when she was 2 months old and had to quit nursing cold turkey- ouch. She has extremely pale skin, and was the earliest walker of the 4- 14 months!! Someone said, “well, that’s OK”, and I said, “Are you kidding? She’s a prodigy!” At the end of Kindergarten, her teacher suggested that we hold her back, so we moved her to the school her sisters went to so she could go to pre-first and catch up a little. Later that year we suspected Dyslexia or some learning issue and had her evaluated, and she is on the lower side of the ADD spectrum, and has some visual processing issues. She is obsessed with cats, and is very, very social. One of her 2 “BFF’s” has cerebral palsy and uses a walker.

So which one has TS? Just one of them. I know I cheated because I left out the seizures and skin issues, but I was trying to make a point, which is hard to articulate. I guess I am trying to say, clumsily, that every child is his/her own wonderful, amazing self, with abilities and flaws, with strengths and weaknesses, and TS may be something that they have, but TS is not who they are.

Julia about a year after diagnosis.
Julia about a year after diagnosis.
Julia in her middle school performance of Bye Bye Birdie- she was diagnosed with TS at 19 months, with the onset of seizures. She has all the typical “stuff”, and since it’s TS. she has weird stuff, too, like a big bump/growth/thing on her tongue. The world would definitely be an emptier place without her in it!
Julia in her middle school performance of Bye Bye Birdie- she was diagnosed with TS at 19 months, with the onset of seizures. She has all the typical “stuff”, and since it’s TS. she has weird stuff, too, like a big bump/growth/thing on her tongue. The world would definitely be an emptier place without her in it!
Julia’s Team at one of the TS walks.
Julia’s Team at one of the TS walks.

Connor started walking!

I’ve been doing a terrible job of updating on Connor lately. This post on medical marijuana went viral a couple months ago, and then a few weeks ago, this post on Athens, Georgia was even bigger with more than 9k shares just on Facebook and 50k views. So if you have been wondering why I have been mostly absent from the blogosphere, it is because I was attempting to ride the wave of popularity for the rest of eternity. Also because I was being lazy.

IMG_0441Connor’s been doing really well in spite of the fact that we’ve been seeing a few more breakthrough seizures on the modified Atkins diet. He took his first independent steps in the pool at aquatic therapy and about a week later, he was standing at the ottoman and suddenly marched away getting in a good 4-5 steps. I wish I had a recording of my reaction–looking up and rubbing my eyes thinking I was seeing things.

He is doing amazing at putting puzzle pieces in the correct spots and putting objects into containers. He has long had a love of destruction, but lacked any desire whatsoever for reconstruction. I’ve now seen him, in the course of two separate evaluations, doing a most spectacular job of putting things away, leading me to conclude that he has been keeping this skill under wraps so that he won’t have to assist in cleaning his playroom.

He found his music therapist’s wooden train whistle  quite enjoyable so my mom bought him one, which led to another milestone of bringing us objects in order to get a desired result. He drops that whistle in our laps and makes us blow it until we are dizzy. He has also started bringing us books and dropping them in our laps, then climbing on the couch next to us to hear them read. He’s awesomely relentless. Yesterday I was dozing off when he dropped Little Blue Truck on my stomach. When I didn’t respond immediately, he plopped it on my face.

It’s so great to watch his cognitive growth. Although he still has no words, he is understanding more and more. We can read books and he will point to objects on the page if we ask. We were working on a puzzle and were missing the lion. I was able to verbally instruct him how to go get it from under a piece of furniture in the room. He’s really into cars and trucks and I’ve noticed that he typically plays with two at a time, always choosing two that are similar in scale, which I find very interesting. I find it positive that he notices differences like that, as if he knows that a Mustang will never be larger than a fire truck! I was excited the other day when he was playing with his wooden hammer to push balls through the hole of the toy and, for the first time, when the ball came back out of the toy, he picked it up and put back on top to repeat the process.

We are dealing with a bit of separation anxiety. He does well when I drop him at Mother’s Morning Out, but phasing me out of the room at music therapy isn’t going so smoothly. Yesterday he had an OT evaluation and I watched through the mirror as he banged on the door to get out and find me. I hope he never notices how boring I actually am.

He’s still eating more pureed food than I would like, but every so often he surprises me by coming over and wanting to eat off my plate. We were late to aquatic therapy once because I was so overjoyed he wanted to share my salmon at lunch one day.

He had a one-hour EEG last week which showed improvement from the last one he had months before we started the diet. Results were still abnormal, which isn’t unusual for TSC. He had spikes coming from a couple of places that have shown activity before, but his left occipital lobe was quiet in contrast to his last EEG. Also, there was no subclinical seizure activity this time around.

IMG_0168Several of the families that worked to try and pass HB 885 here in Georgia have been interviewed for a documentary on the efforts to pass the medical marijuana bill. The filmmakers also recently traveled to Colorado to meet with families that have relocated there to treat their kids. I don’t know if my portion will make the cut, as undoubtedly someone else will voice similar concerns much more eloquently, but I enjoyed the process.

In the meantime, two more Georgia families I met during the legislative session are getting ready to make the move out west to save their kids from unrelenting seizures. The three Georgia families I know that are already there are already experiencing tremendous results. Rep. Allen Peake, champion of HB 885, has started a non-profit called Journey of Hope to help these families get the funds to go. Personally, I hope Sen. Renee Unterman has donated considering she played a pivotal role in killing HB 885 and devastated so many families to tears. I look forward to the 2015 legislative session, though I probably won’t waste much time on my own state senator, Judson Hill, this time around due to this

Since we bought a zoo membership this year, I will leave you with some pics from our two trips so far this season.

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Go, Grandma!
Go, Grandma!

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First time on a carousel.
First time on a carousel.

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Every Child Gets One Free Seizure in Life

Second Annual “Blogging for TSC Awareness Month” Day 8

by guest blogger Jordan Martin  (Brunswick, Georgia)

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Growing up all I ever wanted was to be a wife and mother.  I always wanted to have 4 kids — 2 boys and 2 girls.  I met my husband Thomas (T.C.) when I was 18.  We have been together for 10 years and married for 7 years.  We have 3 amazing boys: Conner 6, Preston 4 and Aiden 18 months.

Conner Thomas Martin was born on what at that time was the luckiest day of the year July 7, 2007. People to this day when they hear his birthday their first reaction is, “Wow, what a lucky boy!”   I always think to myself, “If you only knew what he has been through”.  To this day I still don’t remember what he looked like the first time I saw him.  I was put under for a cesarean.  Never have done drugs in my life or had ever been in the hospital.  So when T.C. showed him to me for the first time all I remember seeing is a head full of black hair and then passing back out.  I know a lot of parents say this but Conner was seriously the best baby. He was never fussy; he loved to sleep.  He did have acid reflux, but other than that he was perfect.  At around a month old I was sitting on our couch burping Conner and my watch pinched him.  He cried but I checked and didn’t see a mark.  A few hours later when T.C. got home he was changing him and noticed a mark on his lower back.  I assumed it was from my watch and told him what happened. “No Big Deal!!!”

A few weeks later Conner had a check-up and the mark was still there but bigger and risen above the skin.  He also had a red mark on his stomach of a different shape but also red and risen above the skin.  The pediatrician assured us they were “hemangioma.”  Nothing to worry about and would shrink as he gets older.  Well he was right about one red mark.

Conner hit all his milestones right on time.  He was the easiest going little boy.  Never sick, never met a stranger he didn’t know, loved to play outside but was also content being by himself in his room playing.  He was just full of life.  In 2009 we had our second son Preston Robert Martin.  He was born exactly 2 years 2 weeks apart from Conner.  He was by far not the best baby.  He was miserable.   Teething but couldn’t cut teeth.  I tell him all the time “I would never re-do you as a baby again.”  Conner loved having a little brother and being able to teach him things.  That is until Preston learned how to crawl and take his toys.  Life was “normal” as could be.  I hate that word “normal”!!!!

Our story begins on September 19, 2010 at 12:15 p.m. Conner was  3 years old.  It was a rainy Sunday afternoon.  The boys woke up at their normal time, considering the night before Conner woke up at 2:45 a.m. throwing up and Preston was up and down cause at this point all his teeth were coming in at the same time.  T.C. was still asleep.   He worked at a mill at the time working 12-14 hour days so on the weekends I let him sleep in.  At 12:00 p.m. I rocked Preston to sleep and asked my mom to watch Conner for me while I did so.

At 12:10 p.m. I laid Preston down and asked my mom where Conner was. She said he was in my room watching Tom and Jerry.  I went into my room and asked Conner to go to the bathroom so we could lie down and take a nap.  I kept calling his name and asking him to get up but he just laid there.  I assumed he was just caught up in the cartoon.  I went and stood in front of the TV and asked him again but NOTHING!!!  I turned around to turn the TV off and when I turned back around his face was turning red and his eyes — it was like there was no life in them.  I said, “Conner what’s wrong with your face!?!”  T.C. immediately jumped up from out of bed and picked him up.  Mind you neither one of us had ever seen a seizure before.  I went into the next room and got my mom.  By time I was back in the room he was foaming at the mouth, had peed himself and was convulsing.  T.C. handed Conner to me and told me to get in the car.  He threw on a shirt pants and didn’t even bother to find his shoes.

We live right down the road from the hospital.  We pulled up so fast they must have seen us coming because they came running out to get him.  They were asking all kinds of questions.  I couldn’t process anything.  Conner couldn’t talk for 4 hours.  He was completely out of it.  Once he was stable and coherent they moved us to a room for overnight observation.  They ran tests and did scans.  The next day the doctor came in and said everything came back “normal.”  It was just a spiked fever that caused the seizure.  I looked at him with my husband, Conner’s grandparents in the room with us and said, “My son doesn’t spike fevers”!  I can count on one hand how many times he has ever been sick.”  I just knew it was something more.  The doctor looked at me and said “Every child gets one free seizure in life.”  I’ve never wanted to punch someone in the face so bad before.

By time we were discharged it was too late to call his pediatrician so the next day I called and scheduled an appointment.  It would be Friday at 3:30 before they would be able to see him.  Tuesday he was fine and back to normal.  Wednesday at 3:00 p.m I was sitting on the couch and Conner called my name.  I said, “yes baby, come here”.  He didn’t answer.  I immediately got this sick feeling in my stomach.  He called me again and when he came over to me he was staring off and his eyes were twitching a little.  It only lasted about a minute.  I thought maybe he was just tired.  I had never heard of staring seizures or any other types besides grand mal.  Oh I learned fast!!!

I told my mom and I think she thought I was being paranoid.  Thursday same exact time, same exact thing.  Friday while I was getting Preston to take Conner to his appointment, he did it again but this time my mom saw it.  His pediatrician informed me they were staring seizures and she was setting us up to see a pediatric neurologist in Savannah and that she was also ordering him to have an EEG done.

Appointments were finally approved through insurance and Conner had his first EEG done in November 2010.  The neurologist appointment was also coming up, but right before Thanksgiving I received a letter stating they had to reschedule it to the end of December.  By this time Conner’s seizures were worse and every day, sometimes resulting in emergency room visits.  We decided after we came back from Thanksgiving in Florida we would go to the hospital in Savannah and pray they would see him or anything.

While in Florida I received a call from the hospital about his EEG results.  Even though Conner was awake it showed abnormal study due to the presence of spike and sharp wave activities in the right hemisphere, which would be consistent with a few focal seizure disorder.  A few days later there we were walking into the emergency room in Savannah.  The lady at the front desk just looked at me like I was crazy when I was explaining what we were doing there. We weren’t leaving any other way.  Conner, being the helpful child he is, decided to speed the process a long faster and started having a seizure.  We noticed that anytime Conner gets nervous, scared, surprised, overly excited or any loud noises tend to make him have seizures.  She immediately called and they came and took us to the back by time we were in a room he had stopped seizing.  We told the on-call doctor what was going on so he said to give him a minute.  An hour later he came back and told us he called the neurologist office and they would see us in 30 minutes.

Dr. Mortez was the neurologist.  She was really nice and we explained everything that had been going on.  She said she was ordering an MRI and requesting all of Conner’s labs, test results and scans done the day he first seized.  Along with those she also wanted the results of his EEG.  She prescribed him Trileptal and would see us back in 2 months.  If only it was that simple.  Conner’s seizure got worse even with the medication and by the time 2 months rolled around we still hadn’t had the MRI.  She increased his medication and said she would call about the MRI.  By now ADHD and aggression had set in and his hostility was always towards his brother and me.  Still is to this day.  T.C. ended up calling our insurance company up and having a few choice words with them because they still hadn’t approved his MRI.  Needless to say a few days I received a call from the doctor’s office with an appointment scheduled.  February 17, 2011 he would have his first MRI done but not his last.

February 18, 2011 T.C. was sick so my parents, Preston, Conner and I all went to Savannah to receive the results from the MRI.  I was honestly expecting for it to be a simple case of epilepsy. BOY WAS I WRONG!!!  My dad stayed in the waiting room with Preston letting him play with the toys.  My mom went in the back with Conner and me.  In walks Dr. Mortez and from then on it was like an out of body experience.  “The MRI didn’t turn out how I was expecting it too.  It’s more serious than what I was hoping for.” She says.  My mom later on told me I turned ghostly white when she said that.  She then explained that Conner had Tuberous Sclerosis.  Something I could barely pronounce, let alone spell.  She explained how his body produces tubers/tumor like growths on his major organs.  Now we were being referred to MCG in Augusta, now Georgia Regents Medical Center, to the epilepsy department.  She assured me it was a good hospital and that they have lots of experience with the disease.  She also explained how the spot on his lower back was a “shagreen patch” not “hemangioma” and how the spot on his face that popped up over the holidays was a “focal angiofibroma” and not a mole like I thought.  My mom took Conner out of the room by then so I could talk more with the doctor.  He would now need to have kidney and heart ultrasounds and have his eyes checked as well.  Soon I was left alone in the room.  Not wanting to cry or get upset; just wanting to reach my husband.  All I could hear were the words tubers/tumor like, more doctors, brain surgery, etc going in circles in my head.  This isn’t going away!!!

When we arrived at home I tried explaining it as best as I could to T.C.  I still hadn’t cried.  I couldn’t let myself.  I honestly don’t remember anything after that besides putting the boys to bed.  When I got in bed I completely feel apart.  T.C. just held me. All I could do was cry.  I didn’t understand how this happened.  How my perfectly healthy child could have been born with this and no one knew it.  How could he just start having seizures out of the blue?  It made no sense.  I was pissed, sad, so many emotions rolled into one.

The next day I just spent lying in bed depressed really.  I couldn’t process all of it.  I needed a day to collect myself.  I was numb to be honest.  So my parents took care of the boys that day and my mom took all the phone calls from family members explaining what was going on.  I definitely went through the seven stages of grief.  I think my husband was stuck in anger and denial for a while.  You mourn the life you had and accept this is your new life.  The next day was filled with phone calls to the cardiologist office, setting up kidney ultrasound and eye appointments.  I had one doctor tell me they had only read a paragraph about it med school.

Dr. Mortez told me that if after two weeks if Conner was still getting worse after the last increase of Trileptal, to call and let her know.  Of course his seizures were still increasing and he ended up in the hospital again.  I called her the next day and left a message.  I was surprised when she called back within a few hours and informed us she called Augusta and they were moving his appointment up and we would be getting a call from them to set up an appointment.  She said since his medication hadn’t been working at all he needs to be monitored soon as possible.  Good news was his eyes didn’t have any tumors.  His heart had two small ones but they weren’t causing any damage so they just need to be monitored.

2014-04-059518.25.55A few weeks later we were in Augusta for Conner’s three-day EEG monitoring.  Dr. Park is head of the epilepsy department in Augusta and Dr. Strickland is the neurologist there.  They are Conner’s doctors still to this day.  Conner was monitored for three days.  His seizures were mild and very little — not what we were expecting, which was unusual for him, until the last morning when he had 10 seizures within a 30 minute time frame.  The doctors came in a little later for rounds and said, “That was good we got everything we needed.”  They were a little too excited about all the seizures at the time I thought.  But I understand now.  They said it’s amazing you are able to press the button right before he starts seizing. I said is that good?  They said, Yes. it means we got everything from the very beginning of his seizures to the ictals.”  They asked how we knew before they started.  I told them how sometimes Conner knows before he is going to have one and he will come find someone, and sometimes he also gets this look on his face right before he starts seizing.  I also explained how I can feel it in my stomach right before as well; it doesn’t matter if Conner is in a different room. I get this sick feeling in my stomach.  It sounds crazy.

They informed us of all the testing coming up to see if he was a candidate for surgery.  They also told us Conner’s was a “spontaneous mutation” in his gene while I was pregnant.  We also found out that the doctor in Brunswick who said all his scans came back “normal” read them wrong.  It clearly states there were “abnormal” findings in his frontal lube.  I thought I was going to lose it.

The next few months we spent traveling back and forth.  By then Conner was on Lamictal as well as Trileptal.  It was hard financially on us but we managed with the help of family and friends.  Conner was being tested to see if he was a good candidate for surgery.  Turns out his seizures came from both right and left frontal lubes more so from the right.  Soon he was on Keppra, Lamictal had been increased and taken off Trileptal.  We also had to add Clonidine because his ADHD was so bad he couldn’t sleep but three hours at a time most nights.  He was also becoming more aggressive and having more meltdowns.  At this point even my parents couldn’t handle him bouncing off the walls and acting violent towards everyone.  I felt trapped in my own home with no help.  T.C. worked full time so I could stay home with the kids.  I literally felt like I was abandoned by everyone.

Conner didn’t understand why all of the sudden he wasn’t allowed to go anywhere.  Places he has been to his whole life; it wasn’t fair.  One day I lost it!  Conner was having a bad day — just one meltdown after the other.  I ended up locking myself and Preston in the bathroom just to get away from him and the constant hitting, kicking, screaming, etc.  I called my mom and my best friend’s mom, who is Conner’s other grandmother and just started yelling about how I felt like everyone abandoned him and me and how this disease was taking over my life it felt like.  I needed them to stop worrying about how they felt or were scared of what might happen and think about what he feels and how confused he is.  He would say, “Mama, I’ll try to be good. Trust me.”   “I won’t hit Preston or scream or anything.”  It broke my heart every time, but after the talk with all the grandparents, they understood and began spending more time with him and Preston and were there for me too.

Summer of 2011 came and Conner turned 4.  He would be starting Pre-K soon which scared me to death because he was still seizing every day.  He was now also having them every night so he started sleeping with me and TC slept on the couch.  A few days after his birthday we had an appointment with the neurosurgeon.   My husband, my Dad, Conner and I  drove up to Augusta the night before since it was an early appointment.   The appointment the next morning consisted of the doctor going over the pros and cons of Conner having brain surgery for his seizures since the medication still wasn’t working.  His opinion was that Conner’s best option was to have the surgery.  So, we decided to go ahead with the surgery.   After that TC broke down, but I stayed calm for him and Conner. I’m the level-headed one when everyone else gets upset.

The surgery was scheduled for October of 2011. Since Conner would have only been in school a short time, the doctor suggested he not start since recovery 2014-04-059518.29.42time could be long.  So we withdrew him from school registration.  He had been so looking forward to going. He saw some of the pictures his friends had posted on Face book of their first day of school.  I hated seeing him upset so I put on his Thomas the Train book bag, stood him in front of the door and took his picture.

September 19, 2011 was exactly one year since Conner’s first seizure.  My parents had the boys for the night.  I was lying in bed, waiting on TC to get home from work and I couldn’t sleep.  I was thinking about the day Conner’s seizures started. Everything just hit me all at once: the past year, all the appointments and medications, seizures and the tests his little body had to endure …and now Brain Surgery!  It just wasn’t FAIR! By the time TC got home I had been crying for an hour.  I had tried to hold all my frustration and feelings in for so long that I felt like a dam had burst inside of me.  It all came pouring out.

The next night Conner had 20 seizures in one hour and I thought this would never stop!!!  The next day Conner didn’t have any seizures or the next day or the next.  Four weeks later…still no seizures.  Everyone was so happy!  Of course I, being prepared for the worst to happen, couldn’t allow myself to be excited.

Conner’s surgery day was fast approaching.   My husband wasn’t feeling comfortable with Conner having the operation since the medication seemed to be working now. We talked it over again and decided to cancel the surgery.  The holidays came and went. Conner was still seizure free although his aggression and his impulse control were still big issues we still had to deal with.     2012 was a good year!  We had an unexpected surprise….we were expecting again.  Conner had, maybe, three seizures that year.  He had no new tumors in his brain, heart, kidneys or eyes.  He got to start Pre-K and loved going to school.  Conner and Preston loved having a new baby brother.  It was just a great year.

March 2013 and it’s time for Conner’s yearly checkups.   Kidneys are first.  By now TC and I know what to look for on an ultrasound. We immediately saw the tumor on his right kidney. It’s not very big, but still, it wasn’t there last year.  So now we go to Augusta to see Dr. Ortiz, Conner’s nephrologist, every three months for blood work and every six months for ultrasounds to monitor any new growth.  At least his heart and eyes are still doing well.              School ended and what we planned to be a fun, enjoyable summer was instead filled with stress and sadness.  My Nana, who was living with us, was diagnosed with stage four lung cancer.  Our days were spent with over fifty people (Hospice, relatives and friends) coming and going from our home.  Ten people were actually living 24/7 on air mattresses throughout the house.  Conner’s anxiety and stress level kicked in as did his seizures.  The boys were very close to their Nana.   Summer came and went and Nana passed away.

School started again.  Conner started Kindergarten and Pres started Pre-K.  Two boys in school!  Yes! Even though I had given Conner’s new teachers and school information on his disease, I don’t think they were prepared for the first day. His anxiety was through the roof, he was having a major meltdown, just a really bad day.  But the next day he did really good and had a good day.

Conner is doing really well in school this year (2013-2014 school year).  His anxiety level is up and down. The amount of sleep he gets affects what kind of day he will have.  He still wakes up two to three times a night most nights so the next day is guaranteed meltdowns, staring seizures, and being emotional.                                                                                                                                  Right now Conner is just like any other six year old little boy.  He does get tired a little more easily due to medication.  He is now on Lamictal, Keppra, Topramax for seizures; Clonidine, Melatonin, to help him sleep and Lisinopril for his kidneys.

Conner understands as much as much as a 6-year-old can, that he has a condition called TSC.  We never treat him any different or any more special than his brothers.  As much as this is about Conner and our journey with TSC, it’s about Conner’s brother Preston too.  He is Conner’s rock.  They may fight and argue nonstop and are like night and day but Preston is always there, and always has been to make sure his brother is ok.  Preston understands that Conner has lots of doctors and he has seen everything his big brother has went through. He would sit next to Conner for two hours when Conner fell asleep after a bad seizure. Preston always made sure that when Conner woke up he had his favorite bunny, his Sippy cup and whatever toy he had sitting next to him so they could play together.

It scares me to death to think of Conner as an adult, letting him grow up and be in charge, or have a say in his healthcare.  I know it isn’t anytime soon but I will have to learn to let go and he will be ok.  He is the strongest little boy I know. I am no longer bitter or angry that he has TSC.  I’m trying to embrace Conner for his differences and his sometimes extreme passion and stubbornness.  He gets that honest.  I don’t worry what people think about him or us if he has a “meltdown” in public.   What is deemed “normal” nowadays any way?  People judge what they don’t know or understand. Some days are better than others and sometimes you feel like you have been defeated but at the end of the day it will be over and something better will happen.

This is our TSC story.  It is nowhere near over; it’s really just begun.  Sometimes it feels like a lifetime ago when we tell stories about Conner or life before TSC.  It’s like a different family.  If anything, I want to teach my kids that a disease does not define you as a person or give you an excuse to do wrong.  It makes you a stronger person and can bring a family closer together.  It makes you love and appreciate one another more and treasure every moment you have together.

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Losing my Athens, Georgia

Ever since I found out last week that Junkman’s Daughter’s Brother in Athens is closing, I have been listening to R.E.M.’s Out of Time and feeling that lovely combination of nostalgic and depressed, which is a little weird because R.E.M. actually predates my time in Athens. Nonetheless, I did spend four years trying to spot Michael Stipe around town and was the only one of my friends that never did. Very disappointing because I had the perfect line to approach him since my initials at the time were R.E.M. He would have been charmed, I’m sure.

courtesy theredandblack.com
Junkman’s Daughter’s Brother courtesy theredandblack.com

Another significant Athens business closing? I really can’t take it. I’ve yet to recover from the loss of the greatest coffee shop I’ve ever known and the hits just keep on coming. I know everyone thinks their era was the best, but I can assure you, it was all about 1998-2002.

Blue Sky. Oh, Blue Sky. Admittedly your Mocha Freezes weren’t always consistent, but the way we’d smell after studying there for a few hours sure was. The walls were always covered in original art that ranged from amazing to downright terrifying at times. I was there to hate on the new Starbucks when it showed up next door and while all the silly freshman who didn’t know any better trekked into that corporate box, we Blue Sky patrons packed the house and basked in the comfort of knowing we were better and smarter. Sometime after I graduated, you decided to expand and serve alcohol in addition to being a coffee shop. My heart sank a little as you betrayed your true calling, and soon you were gone from us forever.

courtesy cooltownstudios.com
courtesy cooltownstudios.com

Mexicali. You were basic, standard Mexican food and almost fully staffed by students, or at least people in that age range. You were so busy that a portion of your staff was dedicated to “chipping.” Yes, just making sure the tables had chips. But you left it to your young staff to make the pitchers of margarita instead of using professional bartenders. And for that, your hammered patrons thanked you.

courtesy jrheimbach http://photos.igougo.com/restaurant-photos-b147629-Athens-Mexicali_Grille.html
courtesy jrheimbach http://photos.igougo.com/restaurant-photos-b147629-Athens-Mexicali_Grille.html

Caliente Cab, you were awesome outdoor eating. Incredible Cuban sandwiches and we could bring our own booze or run into the gas station next door. I hear you may still exist in some form somewhere else, but I don’t have to go to know it’s not the same.

One the location of Caliente Cab. courtesy flagpole.com
Once the location of Caliente Cab. courtesy flagpole.com

One of my favorite freshman memories is of the 80s disco at Georgia Theatre. It was from 2 am to 4 am on the weekends after concerts cleared out. On those rare occasions we weren’t in the mood to go out at our usual hour of 11 pm, we’d set our alarms, take a nap and wake up at 1 and get ready. Then came the new closing time ordinance. Might as well have become that little town in Footloose the way it hurt so bad to lose our weekly dose of Prince and Michael Jackson. Of course, Georgia Theatre isn’t actually gone, despite a major fire that gutted it in 2009. But it’s all clean and colorful outside now which makes me fear that the interior no longer properly reeks of stale beer or boasts a floor you wouldn’t sit on even if both your legs were broken.

courtesy Brad Kuntz
courtesy Brad Kuntz

Molly O’Shea’s Irish Pub. Your Amaretto Sours live on in my heart.

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The Winery. But NOT the recently closed Broad Street location. I liked you before your plastic surgery makeover — the original and smaller location a couple blocks away. Once you moved to the main street, everyone from Milledge Ave. found you. And ruined you.

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“I think you ladies are in the wrong bar!” was how we were once greeted walking into Lunch Paper, the punk bar. It was understandable confusion since most of us looked like we had walked out of a dressing room at Express or Old Navy. But we still loved you. I even remember how we used to go every Monday to watch the new episode of The Osbournes which you always took care to have on the TV. Kids these days probably don’t know that the first season of that show was super awesome and beloved before the family was crammed down our throats from every conceivable angle and Sharon was on six shows at once (not hating, just saying).

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I didn’t actually realize at the time that Five Star Day Cafe was new when I was a freshman. But damn, fifteen years of that that mac and cheese.

courtesy fivestardaycafe.com
courtesy fivestardaycafe.com

Farewell, Schoolkids Records. Damn you, technology.

courtesy onlineathens.com
courtesy onlineathens.com

Now my guilty pleasure. The place that probably won’t show up on many, okay any, best of Athens lists. AMF or Athens Music Factory came about after I started school with cheap drinks and dancing. You have had about a hundred names — Fifth Quarter before you became AMF, Last Call after. I can’t even find one picture of you online. But you are burned in my memory. Sort of. Actually it’s kind of hazy. You actually sold liquor drinks to minors for a quarter with a fallible wristband system. We saved them all and had every color in our purses ready to go. I don’t know why. I don’t think you really cared. But you did give us Thursday 80s night in a beguiling attempt to fill the hole left by Georgia Theatre.

And oh, what they’ve done to my dorm with their renovations. Those kids. They don’t know the true Myers Hall. The true Myers Hall didn’t have air conditioning or fancy, modern “up to code” features. Reader, you may wonder why I would choose such a dorm. The reason was my inability to read between the lines back in 1998 during my senior year of high school. The other buildings in the community were described in the brochure as having AC, while it was pointed out that Myers housed the air-conditioned computer lab. You see, it did not occur to me — IN 1998 — that a dorm would not have air conditioning. In Georgia. In August. When I discovered my blunder, I waited to be murdered by my friend since 8th grade, Giovana, who was to be my roommate and trusted me to make the decision since she didn’t give a crap and I was obsessed with the matter. Fortunately, she missed all my major arteries and we went on to have two great years there. No AC meant everyone’s door was always open and it attracted an interesting array of people. But these kids now are living in chilly asbestos-free suites, never to know the amazing feeling of kicking your sheets off in the middle of the August night and turning your window fan to high. This generation will be so entitled.

Back of renovated Myers Hall and quad. courtesy collinscoopercarusi.com
Back of renovated Myers Hall and quad. courtesy collinscoopercarusi.com

I guess nothing lasts forever. And sometimes that just sucks.

110922AthensGaPage

So, The Grill, don’t even think about it. Ever. Seriously. My heart couldn’t take it.

courtesy thequickanddirtydirty.com
courtesy thequickanddirtydirty.com

College pics…just cuz.

The Good

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Myers Hall - Fall 1998
Myers Hall – Fall 1998
Myers and the Quad - 1998
Myers and the Quad – 1998
My favorite shot I took of College Ave.
My favorite shot I took of College Ave.
Quad activities!
Quad activities!
Freshman Christmas gift exchange on 4 North.
Freshman Christmas gift exchange on 4 North.
Fries and feta at the Grill.
Fries and feta at the Grill.
Does the hot dog guy still come to campus?
Does the hot dog guy still come to campus?

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The Bad

The day I learned dishwasher soap and dish soap are not interchangeable.
The day I learned dishwasher soap and dish soap are not interchangeable.

And the truly ugly…with some beauty.

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