Final Update

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

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?

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!

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

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

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.