Lanier Landing

Hospital due to Dehydration

2014-05-10T18:54:00.000-04:00

We are in New Hanover hospital with Oliver. He is very dehydrated, getting multiple bags of IV fluid, blood work and an abdominal x-ray (which came back ok).

We have to spend

tonight here

to figure out what is going on.

Another night of sleep depravation, God help us!

The rest of

Thursday (our 21 hr long trip to Boston) was one of the worst days of our lives. I thought Andrew and I both were going to loose it.

Andrew was unable to stay awake and is now at home. Since Wednesday he has only slept a few hours total due to travel, Oliver 's illness,

a cold and work.

The man is as worn down as I have seen him.

I am here in the hospital bed with Jim (Andrew's dad) trying to keep Oliver calm. He is in pain, angry and frustrated. My mom and grandmother are coming to do a shift this afternoon with Andrew coming back for the night. Whew, I'm exhausted just writing this.

We saw great teamwork between our Boston doctor and our local pediatrician Dr. Pollock via email today. We started our morning at Medac, but ended up here at the hospital, which clearly was necessary. We are so blessed by our medical team. We also had our always awesome CNA, Zach with us from 7am until 2pm...he is a rockstar!

***Apologies for the formatting.

Let It Rise

2014-04-22T06:45:00.001-04:00

The worship will rise all around us.

The floor will sparkle with tears. The weariness of disappointment will be palatable. The hope of what is to come will be heavy, like a blanket.

One goes to combat
One goes to the surgeon's table
One goes to the clinical trial

In community we'll raise our voices together. Our church family what it was created to do...
Bind up the brokenhearted.
Lift the heads of those hurting.
Year in and year out share the burdens and triumphs together
until one glorious day we are around the Great White Throne and

He will wipe
every tear away

And worship will rise all around us.

Liquid Hope

2014-04-18T16:25:00.005-04:00

In 6 days we’ll hold in our hands liquid hope.

How we have longed for this day. Our hearts swollen with gratitude that we get this chance.

Thankful to find our son, sweet Oliver counted among the 125 small ones with access to this medication.

What do we hope for? What are the stakes exactly?

If we could hear “mama” tumble out of those beautiful red lips. Might we hear an “I love you” just one.more.time. in my whole life? I promise myself that I will record it and I will cling to it when he can so no words. When the seizures make him goes deep within and we can’t find the boy we love in that body.

We know anytime he says those three words, could be the last; we’ve lived with that horror everyday.

We know what it is to have and have taken away. Repeatedly.

It can break one’s spirit, and yet it has not broken ours; for we know we are entitled to nothing.

All is grace.

Our unique boy with bright eyes and sloppy kisses.

We can only pray that the liquid hope runs through his body like healing lava. That it somehow restores, unlocks and sets free the child we once knew so well...

Attitude Just Might Be Everything...Purple Day 2014

2014-03-26T07:19:00.001-04:00

Today is Purple Day, the International Day for Epilepsy Awareness. I already have on my purple and Andrew is wearing his on the set of "Under the Dome".

Oliver isn't dressed yet, or even up because he had a nasty seizure to start his morning.

Face down in the covers, gasping for breath, gagging and limp. I hastily turn on lights to see if he is still breathing, make sure his lips aren't blue, kiss his chubby cheeks, run my hands through his blonde hair.

I hate these seizures so much and as I walk down the stairs, I'm tempted to feel sorry for myself. Sorry for him, for us. I'm tempted to wear this purple all day and mourn. Mourn the loss of so many dreams, of so much he'll never know about life. Mourn that I haven't heard "I Love You" in months and that he has never asked us a question, not even once in his whole life.

BUT, I'm going to make a different choice. Today I'm going to wear the purple and think of the incredible families and children we've been honored to meet (Netta, Mia, the other Oliver, Charlie Claire, Sophie, Carlie, Ryan, Zoe, Dylan, Celia and so many more).

Purple Day 2013

Today instead of a pity, purple party I'll thank God for our amazing team of physicians. I'll let my heart fill with gratitude for the CBD drug trial Oliver gets to start very soon. I will FORCE myself to find the beauty in the ashes. I will pray that I have eyes to see the 4th Man in the fire.

I will think of you, all of our friends and family in your purple. Driving your cars, checking your email, eating lunch, covered in purple for our Oliver.

Today, I will give thanks even when I want to mourn all the tiny deaths....

For there is so little we can change,
except our attitude.

Happy Purple Day 2014!

21.5 Hours

2014-03-01T17:07:00.001-05:00

After 21.5 non-stop hours we woke up this morning to feeling as though we had an epic hangover.

We spent about $1,000 in those short hours and although I feel like I took 10 vodka shots and rode a bull, I did neither.

Are we crazy? Sure, but whatever it takes for Oliver!

Our little superhero!

Our prayer was two fold. First, that we would have eyes to see the goodness of God in this, and also that Andrew and I would remain a team. Travel together with someone for that long and no matter what you say at hour 20, it will probably sound "snappy"! We just decided to not talk and listen to "This American Life" for hour 19-21.5. Good plan if you ever find yourself in this situation :-)

When you have eyes to see there are blessings everywhere. First, all our travel arrangements went as planned (this is huge in the Northeast in the winter).

We got to hang out with the Farrell family, who graciously picked us up at the airport and cooked breakfast for us. There could not be a more generous family in Boston; they are so good to us. We also took a nap at their house before our flight out of town. They are exceedingly more than we could have asked or imagined.

We were amazed again at how blessed we are to be in this drug trial. 125 kids out of 300,000 in America with Epilepsy. We are so blessed and thankful.

Finally, we were surprised by our A-mazing occupational therapist, Seth, who stopped by today with a meal and bottle of wine for dinner tonight. Totally unexpected and so thoughtful. We don't deserve how good you all have been to us. For the emails, texts, funny cards, videos, hugs, thank you.

More like a face plant than a kiss, but I'll take it!

It feels like we are running an endless marathon and despite the finish line moving constantly, we have an army of amazing people cheering us on, binding up our broken hearts, shouting encouragement, and feeding us along the way.

Our marathon times, roughly.

Our doctor has asked that we not put much of the details of the trial on social media due to its sensitive nature. Of course we agreed and understood. Here is what I can tell you: we will start in the med in the next few months and it will be in liquid form. We will make 15 trips total to Boston and 9 of those will include Oliver.

We love you all and are grateful for each of you.

Clinical Trial Begins...

2014-02-27T10:21:00.000-05:00

This photo is from Oliver's very first EEG when he was 19 months old. It has been 1,306 days since that August afternoon. Epilepsy was a monster then and it still is.

We hope CBD will bring him some relief, so tonight we'll be rising at 2:45 AM to drive to Raleigh for our flight to Boston. We'll have two appointments to begin the clinical trial. We arrive back in Raleigh at 9 pm. This kind of travel, with a medically fragile child, will be brutal.

No CBD at this baseline appointment, but this is the preparation for what lies ahead. In our hearts we pray for a miracle, in our heads we know we have to be realistic. This is a hard place to live for 1,306 days...our hearts are so weary of the failed treatments. Even so we feel so incredibly grateful for this opportunity! There are so many children without access to this life saving treatment.

Thanks for cheering us on in this wild adventure. It helps to know we are not alone.

And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. - Hebrews 12

We Have a Date

2014-01-23T16:34:00.001-05:00

We'll have our pre-trial, baseline appointment for Cannabidiol therapy on 2-28-14! We'll fly to Boston for the day (God help us) for the three hour appointment.

2-27-14
Drive to Raleigh and spend the night

2-28-14
Fly out at 6 AM, arrive in Boston at 8 AM
Appt at 11:30 AM at Mass General
Fly out at 7 PM, arrive back in RDU at 9 PM

I really want to try to do a one day trip and see how brutal it really is...
I might be crazy, we'll see :-)

From Nurse Jan:
"at the 2/28 visit Oliver will begin a 1 month " baseline" assessment of seizures- this is BEFORE he starts on the study drug; during this 1 month phase, we cannot make med changes ( except for emergency med use, eg diastat or ativan if needed )"

Remembering how awful the failed brain surgery was
and waiting for a more gentle, less painful, way to help ease the seizures...

So realistically, Oliver won't be getting his first dose until the end of March. I wish we didn't have to wait so long, but I'm still so thankful we are in the trial.

Thank you for all the support and love you've given us. We have a big year ahead of us with so many hopes...it is nice to have friends on the journey with us.

Good news for Georgia regarding legalization of Cannabidiol therapy. I wonder when NC will get it together?
http://www.huffingtonpost.com/2014/01/23/georgia-legalize-cannabidiol-oil-medical-marijuana_n_4647256.html

Praying for Ryan Margaret...brain surgery 1/16/14

2014-01-13T09:46:00.003-05:00

Please join us in praying for and supporting sweet Ryan! This cutie is 2 1/2 and is having brain surgery on Thursday at the Cleveland Clinic. Would you join me in reaching out to this family and showing your love? I think we are too late to get the t-shirts they made, but you could take a photo holding a sign. Remember how we did that with Ollie on his surgery day? We got photos from all over the world and it was SO encouraging?

Those hours while you wait, while your child's skull is being cut by a saw and the hope of seizure freedom is dangling like a carrot before you...they are brutal hours.

Ryan Margaret's Blog:

http://ahopefulhome.com/

Carrie and I don't really "know" each other, but like so many moms of medically fragile children we found each other through the blog. Her email to me Saturday morning was a gift. She told me she'd read through our blog as she prepares for Ryan's brain surgery. That she got the t-shirt idea from us, which of course we got from someone else!

To be able to encourage or help inspire others is a great honor. Having a sick child may be one of the hardest things a person ever deals with. When I'm get overwhelmed that I can't see the beauty in the ashes, along comes an email, a new friend and it helps me carry on.

Let's lift up and show our support for this beautiful girl and her parents on Thursday!

Cannabis Treatment for Pediatric Epilepsy

2013-12-16T21:12:00.000-05:00

A group of NC parents, started by Liz Gorman (who unfortunately has to move to Colorado this week to finally get treatment for her child) are trying to copy the Utah Law to legalize the use of CBD oil in NC. We've now joined this group of exhausted and desperate parents.

We are so thankful Oliver is one of the few chosen children to be in the clinical trial at Mass General for cannabinoid therapy...without it we'd be splitting up our family and moving him to Colorado as well (it is truly the only option for NC families). Can you imagine that? And yet folks are doing this all the time. Shouldn't there be another way? These are families who have endured more than their fair share of hospital stays, near death experiences, and bankrupting medical expenses. But you wouldn't hesitate to move or spend every dime you had to save your child's life, right? Yeah, us too!

We admit this is not a cause we would have imagined taking up, but we also never dreamed we'd have a child who could lose his life to seizures.

We could just take the golden ticket to our clinical trial and stay quiet on NC issues, but then we saw the tears in Zoe's mom's eyes. You see, sweet Zoe doesn't go to Boston for her medical care, and it is very unlikely she'll get into a clinical trial. Her seizures (though more frequent) aren't as dramatic as Oliver's. How do we look in her mom's eyes and just walk away and do nothing? We're not politicians or a recreational marijuana zealots, but parents who aren't going to stop until Zoe (and every other child that needs it) get access to a life-saving treatment. Who will speak for our children who can't speak for themselves? Who will walk to the gates of hell to save the life of their baby? Who will keep writing letters, attending meetings and knocking on doors? Parents of kids with intractable epilepsy do it every day, but but we need your help!

We realize much of this is anecdotal, but since Oliver has tried:
over 20 medications (one that can make him permanently lose peripheral vision)
a medical diet
a failed brain surgery
a failed Vagus Nerve Stimulator

why wouldn't we try CBD treatment?

Help us.

This is the FB page of Families in NC trying to get CBD oil to our children.

We would love it so much if you, our dear friends, would help us raise our voices to get children relief from the seizure monster. We think it is possible in NC, but there must be a chorus of voices so loud that our legislators will pass a bill.

You could pray for wisdom for all of us parents as we try to find the time and resources to pursue this. We already have incredibly full plates with doctor's appointments, medical insurance issues, managing nurses, ordering meds, etc...

Here are some links you might want to check out...

Good news from the office of Walter Jones:
http://www.starnewsonline.com/article/20131216/ARTICLES/131219770

http://www.sltrib.com/sltrib/news/57118270-78/utah-marijuana-hemp-colorado.html.csp

Oliver's classmate and dear friend, Netta:
http://www.starnewsonline.com/article/20130921/ARTICLES/130929951&tc=ix?template=printpicart

This is related to the study Oliver will be participating in through Mass General in Boston:
http://www.medscape.com/viewarticle/817701

The little girl who began a movement:
http://www.cnn.com/2013/08/07/health/charlotte-child-medical-marijuana/

http://www.nj.com/politics/index.ssf/2013/12/fda-approved_medical_marijuana_clinical_trial_gets_underway_next_month_for_kids_with_epilepsy.html

http://www.nytimes.com/2013/12/06/us/families-see-colorado-as-new-frontier-on-medical-marijuana.html?hpw&rref=us&_r=1&

http://www.huffingtonpost.com/2013/12/03/medical-marijuana-epilepsy_n_4378929.html

http://www.koaa.com/news/families-flock-to-colorado-for-mmj-to-treat-children-with-epilepsy/

Dr.Thiele's Testimony on Cannibidiol in Pediatric Patients

2013-12-16T17:21:00.001-05:00

April 18, 2013
Department of Public Health public hearings on proposed regulations at 105 CMR 725.000
Testimony of Elizabeth Anne Thiele, MD, PhD
Director, Pediatric Epilepsy Program
Massachusetts General Hospital

My name is Dr. Elizabeth Anne Thiele, and I am the Director of the Pediatric Epilepsy Service at Massachusetts General Hospital and a Professor in Neurology at Harvard Medical School. My primary office is located at 175 Cambridge Street, Suite 340, Boston, MA 02114-2796. I received my medical degree and PhD from Johns Hopkins University School of Medicine in Baltimore, Maryland and completed an internship and residency in pediatrics at the Johns Hopkins Hospital. I also completed a second residency in child neurology and a postdoctoral research fellowship in neurology at Children’s Hospital in Boston. A copy of my curriculum vitae is attached hereto.

Based on a review of the literature and first-hand experience treating pediatric epilepsy patients, it is my opinion that medical marijuana—and, particularly, the non-psychoactive ingredient in medical marijuana, cannabidiol (CBD)—may have substantial medical benefit for pediatric epilepsy patients, as well as significantly fewer adverse side effects than many of the other anti-epileptic therapies available today. Accordingly, I believe the proposed regulation’s proscription of the use of medical marijuana by children under 18 who do not have a “life-limiting illness”—i.e., an illness for which “reasonable estimates of prognosis suggest death may occur within six months”—would do a significant disservice to the pediatric epilepsy population in Massachusetts.

Epilepsy impacts more than 1% of the population worldwide and is the most common neurologic disorder of childhood. Approximately one-third of all children with epilepsy have seizures that are refractory, or unresponsive, to pharmacologic treatment, or experience intolerable side effects from available antiepileptic medications. As a consequence of repeated seizure activity, many of these children also have significant comorbidities, including cognitive delay or regression, behavioral disturbance, social disabilities or maladjustment, sleep disturbance and injury. Additionally, many of the anti-epileptic drugs available to treat pediatric epilepsy patients have well-documented side effects that can impair cognitive development, behavior, memory, attention and mood.

Numerous studies performed in the past 40 years have demonstrated the anticonvulsant effects of CBD both in animal models and in human adults. In a double blind, placebo-controlled study showing that CBD reduces seizure activity, the most commonly reported side effect was somnolence, and no patients reported any psychotropic effects. Indeed, studies suggest that CBD has no negative impact on psychomotor or psychological functions. Although the impact of CBD on seizures has not yet been studied in the pediatric population, several of my colleagues and I plan to commence a clinical trial in the near future to demonstrate the safety, efficacy and tolerability of CBD in children with intractable epilepsy.

CBD is not yet pharmacologically available in the United States, although it is currently in clinical trials to treat spasticity related to multiple sclerosis and is currently licensed for this treatment role on over 20 countries (GW Pharma, UK).

In the United States, in those states where marijuana has been legalized for medical use, growers have been able to breed plants that have better than a 30:1 ratio of CBD to THC. In other words, marijuana plants are available that have all of the medical benefits of CBD with virtually no psychoactive ingredient. Moreover, although the American Academy of Pediatrics has expressed concern about certain reported side effects of marijuana use—namely, “negative effects on short-term memory, concentration, attention span, motivation, and problem solving” and “adverse effects on coordination, judgment, reaction time, and tracking ability” —studies suggest that these side effects are caused by THC, and not CBD. Accordingly, these potential side effects are of significantly less concern when patients are treated with marijuana derived from plants with high CBD to THC ratio.

My colleagues and I have witnessed the dramatic effect of CBD on many of our pediatric patients. For example, I have a pediatric patient with severe intractable epilepsy who had been experiencing up to 100 seizures every day, despite trials of 18 antiepileptic drugs. After CBD was introduced into his treatment regimen, his seizures decreased dramatically. He now has between 0 and 5 seizures a day. He is also more alert, and turns out to have a wicked good sense of humor.

I have heard numerous similar reports from my colleagues practicing in California, Colorado and abroad, where medical marijuana and/or pharmaceutical CBD are available. These anecdotal reports are support by a recently completed survey conducted by researchers at Stanford of parents of children with severe childhood epilepsies who are treating their child’s seizures with high CBD to THC ratio marijuana plants. 70% of parents reported a decrease in seizure frequency of >50% after starting this treatment, and only 15% saw no change in their children’s seizure frequency. Additionally, these parents reported very few negative side effects from marijuana use. In fact, the most commonly reported side effects were better sleep, increased alertness and better mood. 11 of the 20 parents (55%) also were able to wean their children from an average of two anti-epileptic drugs. Thus, not only does this survey suggest that CBD dramatically reduces seizure activity in pediatric patients with intractable epilepsy, it also demonstrates an improvement in the patients’ quality of life.

I recognize that use of medical marijuana to treat pediatric patients is a controversial topic, and that it may not be appropriate in all circumstances. But, unquestionably, there are numerous pediatric patients with intractable epilepsy residing in Massachusetts for whom the use of high CBD to THC ratio marijuana plants may be the best available treatment at this time. Generally, these patients are not likely to die within the next six months; rather, their seizures are a chronic, debilitating problem with significant comorbid conditions that are only exacerbated by many of the available anti-epileptic drugs.

By confining the use of medical marijuana to pediatric patients who have a “life-limiting illness,” the proposed regulations eliminate a potentially life-altering treatment for these patients. In my view, this limitation is both unwarranted and unnecessary. The proposed regulations contain numerous procedural safeguards that are more than adequate to ensure that marijuana is only administered to pediatric patients when it is medically beneficial to do so. DPH should trust in these procedural controls, rather than universally and categorically denying children with debilitating medical conditions access to treatment that has the potential to dramatically improve their health and quality of life.

Christmas Card Letter 2013

2013-12-15T16:15:00.000-05:00

Dearest Friends & Family,

We hope this letter finds you happy and healthy.

In 2013 our sweet Oliver has grown so much. He is taller, stronger and turned into a human jumping bean. His favorite activity is to watch “Cars” and jump on his mini trampoline, which has taken the place of our coffee table. Picture an extra bouncy “Lord of the Dance”, and you get the idea. :-)

We hope you’ll keep praying for him and for us. Sometimes it feels as though we’re running a marathon, with a finish line that keeps moving. Developmentally, Oliver is still around a 2 year old level in language and skills, suffering from daily seizures (2-6). This means we still dress, feed, bathe and diaper him despite his strength and sixty pound body. We long for him to ask us a question (any question!). We long for his brain to have the gift of seizure freedom. We continue to give thanks for the amazing team of nurses, teachers, therapists, and family who help us care for him everyday.

It is an answer to prayer to say that Oliver has been selected for an FDA approved (fully legal) clinical trial of Cannabis, starting in February in Boston. We’ll be required to travel frequently to remain in the trial (likely 14+ trips to Mass General!). If the new medication (the 20th one he’s tried) doesn’t work, we will begin the process of preparing for a 2nd brain surgery in the latter part of 2014. If you haven’t read or seen how effective Cannabis (the CBD part of the plant, not the THC) can be for epilepsy, we’d love for you to google it. The amazing thing about this treatment is (unlike our current meds) it is NOT psychoactive in it’s effects, despite being derived from Cannabis. We can’t tell you how we are counting down the days until we can give Oliver his first dose. You can follow along on our journey with him via our blog: lanierlanding.blogspot.com

You probably noticed our beautiful niece on our card. Haley is attending Cape Fear Community College and living with us. She’s made us a family of four (at least for a while), and we couldn’t be more overjoyed to share in her life. Our house is regularly filled with college students (either her friends or our nurses) that attend UNCW or CFCC. It is truly a fun place around here, and perhaps a tiny taste of what having a daughter would have been like...

It would be hard to talk about 2013 and not mention our thankfulness for the growth of our real estate company, Lanier Property Group. We thank God for this year full of blessings, new team members (6 of us), old & new clients and new opportunities. For those of you who have sent us referrals or chosen us to be your Realtors, we are extremely grateful and honored!

As we approach Christmas, we’ll have moved our advent candle each day towards the last spot. We look forward to celebrating the birth of the Christ child who gives us hope when the future is uncertain. At the end of our Christmas countdown, you’ll find deep faith, eternal hope, and confetti cannons full of love. We wish you the same!

Merry Christmas,
Andrew, Stephanie & Oliver

Clinical Trial of GWP42006/Cannabinoid for Epilepsy & Tuberous Sclerosis

2013-11-10T21:10:00.000-05:00

One of the reasons we travel to Boston is in hopes of being part of a clinical trial, like the one Oliver will get to participate in next year. As you can imagine, any FDA approved Cannabis clinical trail requires many levels of approval. Dr.Theile tells us she has two people working on this clinical trial almost round the clock. We're thankful there is a physician willing to work so tirelessly for our sweet son, who has already endured 2 brain surgeries, the implantation and explantation of a VNS device, a therapeutic diet, and the failed use of 17 anti-epileptic medications (one of which can cause permanent peripheral blindness). We literally thank God someone is willing to carry our banner before our government and regulatory agencies to relieve the suffering of our only child. We are honored and feel blessed to be part of a landmark study on the efficacy of cannabis for intractable pediatric epilepsy. As you can tell, we've literally tried everything modern medicine has to offer...

As best we understand it here is how it works. There are 3-4 sites in the US for this clinical trial for pediatric epilepsy patients. The trial is sponsored by GW Pharmaceuticals out of the UK and is a Phase I trial. This company has been working on Cannibas for medical treatment for years, and is a world-wide leader. We think we might buy some stock (it is a publicly traded company) NASDAQ: GWPH. At Mass General there were 25 kids selected, and they'll all get the real med, no placebos. Around 4 or 5 of the kids have TSC, others have epilepsy for other reasons (Dravet, Syndrome, Angelman Syndrome, etc.). The trial at Mass General has to go through their Internal Review Board (IRB), which is notorious for being the most difficult anywhere on the face of the earth. NYU's trial of GWP42006 just got through their IRB, so Dr.Thiele is hopeful Mass General won't be too far behind them. Assuming the endless emails from the regulatory powers (and their are many) get resolved, the trials should begin in February and last a year. One of the challenges is that despite this being totally legal and approved for this trial, cannabis is still a Schedule I drug in the US.

In many clinical trials of this kind, the drug manufacturer will give travel considerations to families. Not so in this case. We'll need to fly to Boston to start the trial twice in two weeks after it begins, and every month thereafter (or at least that is our understanding at the moment). As you can imagine, this is going to be seriously expensive! We're totally willing to do whatever it takes to make this happen for our sweet Ollie.

If the drug works for Oliver and we'd like to continue in year #2, we can. This is great news; however, we have to pay out of pocket and it could cost 10,000-15,000 a year. You read correctly, 10-15K a year. Apparently, another one of the TSC drugs (Affinitor) costs 10-15K a month, so I suppose we shouldn't complain?

We are so, so grateful that we get to do this in a clinical trial and not some other way. We're thankful we can still have comprehensive care from Dr.Thiele, and that we're clear on the source of the cannabis that Oliver will receive. We know many other parents who have not had the luxury of being selected for a clinical trial for Cannabis (only 75-100 kids on the entire United States are going to have this opportunity!)

To be 100% clear, what makes people "high" from cannabis is the THC. The form of Cannabis that Oliver will get will be in a liquid form and have no THC. He won't get "high" and he won't be smoking anything (yes, we have been asked this more than once). They extract the helpful ingredients from the plant and leave the rest out. No brownies, no smoke, just plain-old medicine bottles.

As with most things brand-new, there are many unknowns. Will we have to take Oliver with us every month or can we just go to get the medication? What will all the plane tickets and other expenses cost over the next year?

Obviously, most important quest of all: Will GWP42006 work for Oliver? Will it give him some relief from the endless barrage of seizures? Will it un-cloud his mind and help him speak more freely?

If the trial doesn't work, then we will be looking into a second surgery for Oliver. Amazingly, on the plane ride to Boston I happened to sit by a man who works with a very new form of neurosurgery called Six Pillars. I have lots of research to do on this, but it sounds like it has some promise, and I'm forwarding it to Dr.Duhaime (Oliver's neurosurgeon). You never know who God will put in your path...

Coming Home

2013-11-09T11:43:00.000-05:00

Thank goodness we'll be flying home tonight! We met with Dr. Thiele and it appears Oliver is having significant high amplitude discharges during his sleep. The longest period of time Oliver went without a burst was 30 seconds. Can you imagine how hard it is to rest if that is happening in your brain? No wonder he is having these issues. These are very likely interfering with his development and explain the loss in skills we have seen. We'll be trying an increase in Onfi to help with these nighttime issues in lieu of staying here over night and getting a high dose of Valium.

While we were monitoring he had 4 seizures, 2 were when he was asleep and neither Andrew or I caught them. He had the most significant seizure yesterday afternoon, which was one of the worst we've ever captured while on EEG. The seizures are tonic and are coming from the left side (F3 led for those that know/care). His breathing is more problematic now than it used to be, as he often gags and gasps near the end of the seizure. It is awful to watch.

Since we still see most of the seizure activity originating from the left side, we are seriously considering a second surgery sometime in 2014 (if the clinical trial drug doesn't address the night time issues). When we come back to start the trial (tentatively in February) we'll also meet with Dr. Duhaime (who we didn't get to see this time). We'll discuss doing brain mapping via a machine called a MEG to make sure we are being extra safe near his motor and sensory strip. We hope Oliver will tolerate and cooperate with how the MEG works (you can't sedate the patient).

This second surgery (if we do it) will have more potential for long-term damage, but at this rate we're feeling that a more aggressive treatment is warranted than 2 years ago. Things were much more hopeful then, and it is hard to watch the old videos, even the ones post-surgery...Oliver has certainly lost some of his brightness.

We are grateful for a quick trip that yielded helpful information, a plan of treatment moving forward, and an amazing team at MGH that takes such good care of Oliver.

Roses & Thorns Thus Far..

2013-11-08T17:56:00.003-05:00

Thorns

- Oliver not sleeping at all on the plane and fighting Andrew the entire time.

- Waiting 6.5 hours to be admitted for the 24 hour EEG, that now will be more like 16 hours. Boo!

- Andrew having to hold down Oliver for the rapid MRI. Awful. Andrew convincing them to try for a final (4th) try of which was successful. Wish you could see Andrew's hands on Oliver's head in the MRI. I'll try to take a screen shot of it later for your admiration.

- Learning about the clinical trial for Cannabinoid and how much it is going to cost to participate. More on that later...

- We are told they may keep us one more night if the EEG looks really bad during the night. If this happens we'll of course be scrambling to deal with our plane tickets on a holiday weekend. Sigh. Good thing I got trip insurance (learned that lesson the hard way!)

Roses

- I am married to Superman. Strong enough to handle Oliver, loving me through it all. Just the kind of Dad I knew he'd be, but my goodness does he shine in these situations. So thankful we do this as a team!

- Tailwind on plane ride up here so it shaved off 20 minutes

- Seeing the lovely, gracious, warm and fun Farrell family

- Properly sedating Oliver for his EEG application with Clonidine.

- Sunset over the Charles River out our window

- The helpful nature and sweet attitudes of all the MGH staff. Literally every single person today.

- Meeting Kim and Celia (a precious little girl who also fights Epilepsy and had brain surgery. Her mom and I met online through this blog!)

- Learning about the clinical trial for Cannabinoid and that it will hopefully start in February! That will get it's own post, because there is much more to say on that note.

-Oliver petting the police horse in the Public Garden (during that 6.5 hour wait to be admitted.)

So tomorrow we'll have more news on the results of the EEG and hopefully will have had a consult with Dr. Duhaime (Pediatric Neurosurgeon). Thanks for supporting us and caring about our sweet Oliver! Your prayers are a blessing.

Halloween Pictures and More...

2013-11-04T14:16:00.000-05:00

First off we have to apologize for our blog...it is auto-emailing many of you. We aren’t sure how this happened, or how to fix it. I have gotten the emails as well and also the spanish ones. We have been so busy that we’ve hardly had time to address the issue. Nonetheless we wanted to let you know we’re aware and hope to get it fixed ASAP.

In good news, Oliver got his long awaited chair for feeding and activities. Our insurance finally approved it after waiting for more than 9 months. The invoice was for $5,800! Medical equipment is so expensive! Thank God we have insurance and also CAP Medicaid (for medically fragile children).

We leave for Boston on Thursday, and will have a whirlwind trip of tests and appointments. We’ll meet with the always awesome Dr.Thiele, have a 24 hour EEG, and a rapid MRI. Our main concern is Oliver’s regression in language. 6 months ago he was saying 35 words in a speech therapy session, now he struggles to get out 5. Yesterday morning he did not make a sound for hours. He is having trouble with words that have always been very easy for him “Mama”, “Eat”, “Ball”...it is so hard to watch him struggle. Our hypothesis is that he is having many more seizures than we are seeing. Sigh. This is so hard.

Some of my friends were part of the "Beach to Battleship" Ironman event a few weekends ago. we feel like we are in an emotional Ironman. Almost 5 years of changing diapers, having a monitor by our ear every night, dozens of EEGs and more nights in a hospital than we'd like. Being the parent of a sick child is an endurance race.

When Andrew and I were just married, we ordered a leather couch to match the leather chair he got from working on Dawson’s Creek. The chair came from "Restoration Hardware" so we got the couch to match. It is still the most expensive piece of furniture we have ever bought.

Guess who has bitten two large holes in our couch? And before you say “you can get it fixed” we realize that. The problem is that the biting continues. It appears the couch is going to take a rest in Haley’s room over the garage as we hope and pray we can get through this "extended" biting phase. In the meantime, my friend Liz has started a business helping folks decorate, and is helping us make new choices in the living room that are more Oliver friendly. I’m thankful for her friendship and also for her understanding of the challenges of decorating with Oliver in mind. She helped us re-do our breakfast nook and we’re really happy with how that turned out. It gives us more seating and the hammered zinc table top is perfect, since it already looks beat-up. As Grandaddy Jim said “anything Oliver does to this will only add to the patina."

Haley is still being an amazing help with Oliver and really getting settled into life in Wilmington. We were happy to host 50 of the college students from our church for a luncheon yesterday. We want to get to know Haley's friends and let them know our house is always available for them. I was so impressed by the generosity and hospitality of the Bonneys, the Stratas and the Philips in college and I’d love to replicate that for Haley and her friends.

The fall festival at church was fun for Oliver. Our nurse Zach was an amazing help, and even took Oliver on the giant slide. Oliver especially loved the hayrides and the tractor. We are blessed with amazing nurses, bus drivers, therapists, babysitters and teachers. Here are the people involved weekly in Oliver’s care: 1.Zach, 2.Gina, 3.Sammy, 4.Tracy, 5.Kerri, 6. Jess, 7. Rachel, 8. Jenn, 9. Blair, 10.Michelle, 11.Amy, 12.Seth, 13.Kitsy, 14.Sarah, 15.Haley and 16.Lauren, 17. Peaches, 18. Brian. No wonder I’m tired trying to schedule/keep up with all these fantastic folks!

My apologies for blogging less, it seems the very long work weeks and the complicated nature of Oliver’s care leaves little time for writing. We’ll be updating at least once or twice from Boston for those of you who follow our trips up there.

It is always an honor to know that so many of you are praying for us and cheering us on. Even though it can be lonely, we know that we have so much love.

Two Squares

2013-08-19T13:27:00.001-04:00

Everyday after I drop Oliver off at daycare, past the walkers and wheelchairs, past the the wall with the Little Mermaid, it happens. I walk through the white gate, I latch it behind me and there they are. Under the tree. Two unassuming squares on the ground; reminders of babies lost before they ever got to be in Kindergarten. A sobering wake up call every morning of having a medically fragile child; and really he is just that,

fragile.

On August 1st this year, I (very surprisingly) didn’t even think about that fateful day 3 years ago that changed everything. It wasn’t until I sat to write down this post that I realized that August 1st came and went this year. Perhaps this is a sign of growing into my role as the mom of a special needs child? Perhaps I should be comforted that my mind was on the future and not stuck in the painful past.

What I’ve learned in the past 3 years:

You grow into the hardship. You literally grow a muscle for the ability to handle all of it. My mind is stronger, more organized, more rational, focused on all it takes to keep Oliver alive and well. If only I could have told myself that in November of 2010, when the depression got a hold of me and the tears seemed to be a constant rolling down my face. Thank God that dark season is behind me...

One of our CNA’s said it best when she said, “You you know Stephanie, what is so hard about your situation is you’re not just a mom, you are a caregiver.” So after I’ve been Oliver’s mom, I have to switch right over to caregiver. This is not easy. That is one major difference between my life and most 31 year old mothers.

We’ve basically got a 1 ½ to 2 year old in the very able body of a 6.5 year old. I can’t overstate how worried we are that if he doesn’t develop cognitively and continues to be so physically active, we will ultimately be unable to handle him. This thought keeps us up at night.

Papa cracks him up

Love this shot of our cutie

Oliver is back on the medication, (Sabril) and although he is very tired, the seizures are less scary and less frequent (still 1-2 a day). We are thankful for this, but know that adding more and more medications on top of one another is not a great solution. It is hard for Oliver to learn when he is on 5 seriously potent medications, causing fatigue, dizziness, lack of coordination, etc... He is currently taking Vimpat, Ativan, Banzel, Sabril and Onfi (all for seizures). If you took his daily meds I doubt you could walk...

Oliver will continue at Easter Seals for the school year and will be in the Pre-K class. We are so happy that his buddies Netta and Mia (both with epilepsy) will be in class with him this year. They have made a large snuggle corner for these three when they have seizures or need a rest. We’re thankful for the great staff and one more year of familiarity.

Through our doctor in Boston it *appears* Oliver is going to get to be one of twelve of her patients to be on cannabis for seizures. As you may have heard in the media, (thanks to everyone who emailed us articles, etc.) cannabis has been shown to be very effective at controlling seizures. We are hoping all the approvals go through for this. Right now Dr.Thiele is estimating it is about another 6 months out. We still have a great deal of questions, and we’re just at the beginning.

Haley at her graduation

My niece Haley has moved in with us and starts her classes at CFCC on Monday. She has already been an enormous help and lots of fun. It has been a bit of trial by fire for her; she’s already changing diapers (this isn’t an easy task, even our CNA’s have trouble) and giving meds sometimes. We’re enjoying our time with her so much. Since we won’t be having more children, we feel like we’re getting a huge gift in helping her navigate college and being her Wilmington home. Andrew has promised to help her with her Intro to Film Studies class. Perhaps he’ll convert her to a film snob and I’ll never get to see a Rom-Com again in this house.

Andrew finished up on Under the Dome and is now working on Sleepy Hollow. He has been logging some insane film industry hours and coming home with amazing stories of trucks stuck in the mud, being dug out etc...

Lanier Property Group continues to quickly grow, and we’re working with more clients and have more listings than ever. We send a sincere thanks to each of you that have sent your friends and family our way...we appreciate it.

Wishing he could go for a swing, but the rain won't stop

Add caption

Toy time

Our second try at a trampoline for wild thing

Thankful

2013-07-25T21:55:00.000-04:00

After talking with Dr. Thiele's amazing nurse (Jan) multiple times today, it appears that so far we have shut down the seizures that were so scary. We increased two meds this morning and tonight and that appears to have worked so far.

Today I stayed at home and worked so I could be near Oliver in case he needed his rescue medication. Our wonderful nurse (Tracy) came to the house to be with Oliver here instead of school. It was a great chance for me to spend more time with him today, and also be amazed by Tracy's patience and love. We feel very blessed to have such great CNAs!

Despite the morning getting off to a very worrisome start, Oliver is now sleeping soundly in his bed. We will be in touch with the Boston crew tomorrow to make sure the weekend plan is in place.

Thank you for the emails, texts and sweet ways you encourage us. It means the world to us!

Sometimes the phrase "medically fragile child" seems distant. Watching him stop breathing brought all of that home. We are thankful we have you all to lean on and pray for us in these hard times.

Prayers Please

2013-07-24T21:47:00.000-04:00

I know it has been forever since I posted, but prayers for Oliver would be appreciated. Tonight he had a seizure where he had difficulty breathing and it was really scary. We have a call and email in to our Boston team and hope we can hear from them soon. Please pray for a solution...watching your child struggle to breath as they go limp is awful!

A quick update: recently Oliver has had significant trouble accessing language and using words. He rarely speaks, but so clearly wants to. I haven't heard him say "I love you" or "mama" in over a month.

So very sad. My heart hurts to even type it.

"Uncle Sam" and Ollie at our neighborhood 4th of July Parade

Despite Andrew and I both working long hours, we have enjoyed the summer so far. We have loved having my grandmother move to town permanently, and my mom here for most of the summer. We have also enjoyed visits with Andrew's family and all of Oliver's cousins. We even got a surprise visit from Uncle David and Aunt Yerusalem (expecting Oliver's 11th cousin in August!)

Also, we have been in contact with Dr.Thiele about getting Oliver into a clinical trial (they are hoping to put 12 kids) on Cannabadiol. I don't know what the time frame is for this, but we are hopeful an entirely new drug will provide relief from the relentless seizures.

Thanks for hanging with us, despite my lack of posting. We are so appreciative of your love and prayers! Here is one of my favorite new photos of my boys. Love these two so very much...

Happy Summer!

2013-05-26T20:23:00.004-04:00

Thank you for everyone who has been asking about how Oliver is doing. I apologize for the inconsistent posting...Andrew and I have both been working hard the past few months and time to write is scarce.

Currently, Oliver is averaging 1-4 seizures a day; they usually last around one minute.

He has settled into a routine at school and is riding the bus in the afternoon. We’ve had the same CNAs for many months now, and we dread the transition when one of them (Molly) leaves at the end of July. We just met a new CNA (our 11th one) and hope she’ll be a good fit. Since most of our CNAs are UNCW nursing students, they come and go so quickly. It is worth it to get such quality people, but it can get tiresome to keep training and investing in getting to know each one.

We had Shane Taylor (handyman extraordinaire) build a frame for Oliver’s new special needs swing and shade in our backyard. Oliver LOVES it and spends up to one hour at a time in it. We are thankful for Shane’s vision for our unusual request; it turned out looking so good!

The awesome swing and shade in our backyard

We are thankful and thrilled to report Oliver’s behavior has also been improving over the last month or so. No more biting or pulling hair (at least not his little friends), although he has bit through his jumpolene and almost through the arm on our leather couch in the midst of a sensory moment. He is using the potty 25% of the time (when we put him on there.) He is worlds away from initiating going, or stopping himself from going (but we are taking the long view). Remember when I said I hoped he was potty trained by 4, that is funny in retrospect! I was so much more ambitious in those days. If and when Oliver is fully potty trained, it will be because he is ready. I pray the Lord will bless us with that gift, but know it isn’t a guarantee at this rate.

We confess we are very discouraged by Oliver’s lack of communication. A spontaneous “I LOVE YOU” only happens once every month or so...it is SO HARD. He often looks through us, not really at us. It appears he is uncomfortable in his body so frequently, and we just don’t know how to help him. The lack of communication (having a sporadically mute child) is beyond painful. If your child can tell you about their day, say their own prayers, ask you questions, you should thank God tonight.

Oliver continues to receive speech therapy with Amy Nolan twice a week, and she gets him to do and say amazing things. The problem is, he can’t generalize those skills to everyday life (even though Amy encourages us that it is ‘in there’). I think she is also discouraged by the regression we’ve seen in the last few months. At her behest we are demo-ing a Dynovox, which is an Augmentative Communication Device. Oliver seems to think it is a giant iPad, so he often tries to turn it off in order to find a game (funny little guy). Our hope is the Dynavox (which is just a loaner right now) will be a tool for him on his hard days when speech is all but impossible.

Oliver and the Dynovox

We continue to go to the TEACCH center once a month or so to get their help on behaviors and routines to create for Oliver. This past session we brought along Molly, and I think it was a great learning experience for her as well. We are so thankful for the creative thinking they have done to try and help us with Oliver. The biggest take-away for me is to SLOW DOWN. I’m always so fast paced, and Oliver processes much more slowly than I even realize.

We also have hired a music therapist to come in the home and see if we can get Oliver to communicate via song. I’m wondering if we can create a language of songs? We’ll see...It doesn’t hurt to try, right? We’ll try almost anything. Since this isn’t covered by insurance or subsidized in anyway, it will have to work to justify the cost. We’ll let you know how it goes; our first session is scheduled for next week.

As for Andrew and I, we are doing well. We are both working hard and go to bed earlier and earlier in an effort to stay rested. We love our sleep around this place! We absolutely treasure our moments snuggling in the bed with Oliver (rare as they are) with our little family of three. When Oliver sings to himself after a seizure it is so sweet, I look at him and feel like my heart will just explode with love. He has such a precious smile that lights up the room. We love to tickle him and sing to him, since those are the times he is most engaged.

Your love, prayers and encouragement for the long haul are a gift we treasure. Thanks for caring about our precious son, the apple of our eyes.

Shaunna Kennedy

At Lanier Property Group, we have hired a “Director of First Impressions” (don’t you love that title?) who has made our lives SO MUCH better! Shaunna Kennedy has been a breath of fresh air, an encouragement, and a super quick study. When I drive into the parking lot and see her car there, I can’t help but smile and thank God for bringing such an amazing person to LPG!

Starting in June, I’m leading a summer women’s bible study at Christ Community Church. We are doing John Piper’s “Don’t Waste Your Life” and in studying the material it has already got me thinking; especially about being a business owner and how easily we could waste that opportunity. If you want to join us, email me and I’ll get you the information. I am sure it is going to be an awesome time of learning and new friendships, just like the past 2 years have been.

Mother's Day weekend Andrew sent me off to Bald Head Island with my mom, grandmother and some girlfriends. It was heavenly! Stephanie also recently graduated from the Leadership Wilmington class, which she is sad has come to an end.

Wishing all of you a wonderful summer!

Final Update

2013-03-29T21:11:00.000-04:00

We're out of the hospital and at the Farrell's house. It is so nice to have a home away from home. Oliver loved playing with his buddies and eating pizza. Poor little thing was SO hungry since his last meal was almost 24 hours ago, due to the MRI.

Alright, here is the scoop:

Brain MRI was stable, no changes. Thank God! Oliver's subependymal nodules haven't grown, and that is the area of major concern for him. If those nodules grow they can become life threatening. We are thanking the Lord for this good news.

Kidney MRI showed very small renal cysts. Nothing to worry about at the moment, but certainly something to keep an eye on. Next time we come we'll meet with the kidney specialist, just to monitor them. Kidney issues are present in 85% of people with TSC, so this is no surprise.

Seizure and behavior control are the main concerns at the moment, obviously. They seem to be related, so by helping decrease seizures we hope to optimize behavior.

Dr.Thiele did mention that in a few years we may consider putting a VNS in again, or do a second brain surgery. She still suspects that the majority of his seizures are coming from the frontal lobe; the area that Dr.Duhaime wasn't comfortable removing because it is close to where the brain controls the face. One mis-step in that area of the brain and you get a paralyzed child. It wasn't a risk we were willing to take back then. Perhaps in a few more years we will depending on his prognosis. It would be less risky in the future, because Oliver would be older and they'd be able to map his brain better. We'll cross that bridge when we get to it, but it is on the table. Sigh.

We're looking forward to being in our own beds tomorrow night and getting back into our normal routine. We think we'll be back in Wilmington by dinner time, and Steph's grandmother, mom and niece will be there waiting for us.

Our deepest thanks to all of your for your prayers, love and support. We feel very cared for in this challenging time.

Sleepover, Epilepsy Style

2013-03-29T10:05:00.000-04:00

Oliver is enjoying Italian Ice for his breakfast this morning in preparation for his MRI. He couldn't have any food after midnight, but so far the dessert for breakfast bit is working.

Dr.Thiele popped by our room this morning and said she saw 8 seizures throughout the night, none of which Andrew and I noticed. They were brief, but 8 is obviously too many. She said it was also difficult to tell exactly where they were coming from, but she suspected the left side.

The good news is that his electrical discharges between seizures were significantly less than last time. This is very important news for his development. If you think of the discharges as static or background noise you can imagine why this prevents learning and development. We are really thankful for this good news!

I feel like I could go lie down on a rock and sleep for 48 hours. The sleep deprivation is similar to a newborn. Every time Oliver moved we had to make sure he wasn't tearing off his ding-dang "hat." So basically it goes like this:

You get comfortable (I say that loosely...this is a chair that makes a bed for a person size xs) and pull up the covers. You begin to drift off to sleep and then all the sudden you hear rapid movement in the bed. You bolt out of your chair-bed-thing-sized-for-a-pre-teen and make sure the hat is still intact. This happens no less than 20 times from 9 PM to 5:30 AM. Then around 3:00 AM, you get so tired of popping up like it is a fire every 15 minutes and get in bed with the toddler to intervene from there. You briefly remember not to shock the camera that is fully focused on your bed with an awesome view of your granny panties.

That is a sleepover, epilepsy style.

His MRI of his brain and kidneys is at 11:30. We'll write a short post this evening.

Who Needs A Mouse?

2013-03-28T16:52:00.005-04:00

Andrew and I look like we were in a WWF cage fight for hours with Hulk Hogan. This is what sleep depravation, travel, and hand to hand combat look like.

Looking r.o.u.g.h

Let me explain...

In order to hold Oliver still to get the EEG on, Andrew had to lay on top of him. I assisted by holding his head either to the left or right. as directed by the EEG technician. We stopped at one point and wrapped him up like a mummy to keep his arms from getting out, but this little Houdini still worked his way out. All of us were sweating like we were doing P90-X in a sauna.

At one point Andrew was lying on Oliver and I was standing over top holding down Oliver's head, while the room reverberated with screams of a very ticked-off 4 year old. I can only imagine what this looked like from the outside. I am also very sure that my neutral colored granny panties were hanging out the back of my skinny jeans. Awesome, that is freakin' awesome.

I have to give major props to Andres, who worked super fast and never lost his cool with our little wild man. Oliver was so sweaty that the EEG wasn't even picking up data until the air gun cooled him down for 15 minutes.

We are hoping for a peaceful night. Notice I said hoping, not expecting. Dr.Thiele will come back in the morning and let us know the results of the EEG, and then we'll see her again tomorrow afternoon to discuss the MRI findings, etc...

Finally, I'll leave you with one of those tiny deaths related to the parenting of a child that is medically fragile and has special needs...You know I'd have to go and get all serious on you at the end :-)

At the airport I started thinking about the fact that we are spending our precious "Spring Break" time away from school and our jobs at a hospital. For the money we are spending, we could have gone somewhere warm and magical with a cute little mouse...

that was until I saw the many families today in Mickey t-shirts and princess back-packs waiting at the airline gates with a destination of Orlando

But then I saw Dr.Thiele walk into our room with a broad smile and a big hug, and I thought

"Who the heck needs a mouse, when we have her?"

Purple Day Pics!

2013-03-26T21:15:00.000-04:00

The Lanier Family rocked out Purple Day and so did our friends!

Purple Cupcakes for the wonderful teachers and staff at Easter Seals UCP

Oliver loved his surprise purple balloons on our front porch this afternoon. We felt so loved today!

Sweet notes from the Hackney family dangling from the balloon bouquet

Today we felt so supported by our friends and family! Oliver's cousin Will sent the sweetest video to us this morning. He told his class today all about Epilepsy in his purple button down shirt :-)

My mom said at the high school where she works (she is a special needs teacher assistant) in Concord, NC was full of staff and students in purple. She made ribbons to give out to help spread the word. Good job, mama! Way to make the world a friendlier, more accepting place for Ollie and all his buddies with Epilepsy.

Our friends Hadley, Liz, Charlotte & Lily Kate Carpenter wearing their purple

Tomorrow we are off to Raleigh for the night, and then on a flight very early Thursday morning to Boston. It appears we won't have to endure a blizzard, just a little snow.

We'll update the Facebook frequently and the blog at least once or twice. Thank you for you prayers, emails, love and support!

Photos with toddlers are challenging....

John 13:34-35

So now I am giving you a new commandment: Love each other. Just as I have loved you, you should love each other. Your love for one another will prove to the world that you are my disciples.

Purple Day 3-26-13

2013-03-24T16:50:00.002-04:00

This Tuesday March 26th is Purple Day, which is an international day to raise awareness about epilepsy and seizure disorders. Would you join us in wearing purple on Tuesday?

As you know, Oliver’s daily seizures rob him of so much of his life; including a good bit of his development and language skills. Despite having hundreds of seizures the past 2 ½ years, he still is a joyful, happy child, and we love him with all our hearts.

And when you put on that purple, why don’t you go ahead and give thanks for your healthy children (if you are blessed enough to have them). Could you remind them to love and stand up for their friends with disabilities? After all, that is your role as the parent of a healthy kid. It is an opportunity to teach your child to choose compassion over impatience, to choose love over bullying; to choose to be a life-giver instead of hurting the most vulnerable.

So wear purple this Tuesday 3/26/13. Pray for Ollie, teach your children to love and pray for kids like Ollie, and
give us grace when our life just doesn’t work like yours...

for we are weary and we are scared....
scared of tiny caskets
and birthdays we may never celebrate
because to be brutally honest, we are afraid of being childless one day because the seizure monster claims lives
all the time.

This is the painful reality of intractable epilepsy and it is a

very hard one.

The Wheels on the Bus

2013-03-03T16:00:00.001-05:00

Last sunday we took our Lanier Property Group team to the Cucalorus Film Festival Oscar Party. We borrowed GranDad and Gran’s RV to transport our team. It was a super fun night, and I have to say our crew cleans up nicely!

Also, at LPG we have hired an assistant, which is a huge step in our growth. She is our first employee! Shaunna Kennedy is actually the person I had in mind when I wrote the job description, I just had no idea we could get her to join us. I SO love when God gives this kind of really good gift.

Oliver’s seizures continue and recently have been on the rise (2-5 a day). We’ve been in constant contact with Dr.Thiele and her nurse (Jan). We’re shuffling medications around to see if we can address the seizures and some aggressive behavior we’ve been seeing. Kicking, biting, and pulling hair aren’t good ways to make friends with classmates, teachers, CNAs or mamas. We aren’t sure if a medication is triggering the aggression, or if we are still just stuck in toddlerville. We also are planning a trip to Boston over Easter for Oliver’s annual MRI of brain & kidneys, EEG, appointment with Dr.Thiele, etc.

As of a few weeks ago, we put Oliver back on Sabril. To read my original post about that first dose click here. It still makes me shiver when I think about it, but we have so few options... Prayers for the protection of his eyesight are constantly said around here.

For after-school activities we are exploring the Coastal Therapeutic Riding Program here in Wilmington. We are also going to the TEACCH Center for Autism in Wilmington so we can get help with Oliver. So many of his behaviors and challenges are outside the scope of “typical” parenting and we need HELP! We thankful for Kia and Becky who are already helping to create schedules and routines to aid in transitions and reduce tantrums and biting.

You see, between the CNAs (4 total), Stephanie Schneider (staying in our room over the garage), Occupational and Speech Therapists, our house is always full! Sometimes it feels more like a college girls dorm than a regular family home, which we really enjoy. Both Stephanie and the CNAs tell us about their lives, and we feel honored to be part of these special years. Often you’ll find a few of us gathered around our kitchen island laughing and talking... and those are some of our favorite times at the house.

Lastly, Oliver is now riding the bus home each day from Easter Seals UCP. Either us or the CNA is at home each day to get him off the bus. He is on the bus with other toddlers who some of which have special needs. There is a driver and also a spotter (in the event of a seizure, etc.).

The first day your child arrives home on the “short bus” is rather memorable. It is one of those days you don’t forget. It goes down with the other “firsts”: First ambulance ride, first Life-Flight, first brain surgery, first wound rupture, first dose of Sabril, first MRI, first day in a special needs preschool...

None of these firsts were expected, and yet we’re still here. All three of us are growing and learning. We know God will supply us the grace to grow into the other firsts before us...whatever they may be.