Connection

Oliver’s autism means that sometimes it is hard for us to connect. We can be in the same room, but not really together. It is a challenging experience to articulate to be together, but apart. Sometimes (for days) it feels like he is locked away from me, but this weekend at the beach he was all there. His sweet smile, his engaged eyes, his gentle touch to my face (almost as if he hadn’t seen me in a long time) made this mama’s heart melt 💕 The connecting didn’t stop with people, he was enthralled with the ocean and sand like a kid who had never seen a wave crash. He experienced so much wonder and joy in those hours. To see the world through his eyes is...spellbinding. Connecting, really connecting, to other people and God’s creation is such a gift. Let us not take it for granted.

Such A Puzzle

We are settled into our "home away from home" on the 6th floor, where we have reunited with so many of our nursing friends. We have to be the biggest fans of UNC Children's Floor 6...such good people here, we wish we could introduce you to these incredible human beings. Today we are working on Oliver’s constipation (i.e. he is getting another clean out) as well as meeting with dozens of doctors. We have actually gotten tired of talking, especially retelling Ollie’s story “from the beginning.” We are tinkering around with some medications and trying to figure out a plan of action for the fainting spells, but so far nobody has a brilliant solution. We wish there was more we could tell you, but as the neurologist said, “Oliver, you are such a puzzle!”

Mama stealing kisses 

Y'all are so sweet...we can already anticipate the texts and FB messages you are going to send:

Is this related to his Mitochondrial Disease? Probably. Do we know more about the genetic test results? Not yet. Does this have anything to do with Epilepsy? Probably not. Is this a self-stimulating behavior related to Autism or Sensory Processing Disorder? Maybe. Is this seen in other kids with Tuberous Sclerosis? No. Do you know why he is doing this? Not exactly. Is he feeling discomfort or stress and trying to soothe himself? Probably.

Do you need anything at all?!? Actually we could use a box of nice tissues with the aloe. The hospital ones are sandpaper and sometimes we do cry. This is hard on our hearts. We would also like a continuous IV drip of coffee. 😂

How long will you be there? We don’t know, but probably at least until Monday.

One of the few smiles from today. We worked hard for this one!

Per usual, we have more questions than answers. We are getting more comfortable living in the land of unknowns. It is an emotionally draining place to be, with questions about life expectancy and quality of life always swirling in the background.

Reading books with his cousin, Jackson, who took a break from classes to pop in for a visit

No matter the answers we do or do not get, we are going to live life the way we’ve been living it---with intention and gratitude.

CBD Oil Legalized in NC for Epilepsy Treatment!

We're off to Boston again this week. Oliver will have a 24 hour EEG. It will be the first one since he began the clinical trial!

I love this picture from when Oliver was little 

Last week CBD Oil was made legal in NC! It was a great victory for our family and so many others. Many people have worked so hard on this issue for years and it is beautiful to see their efforts pay off. I have to thank my aunt Robin and my dad for their advocacy in the Concord, NC area. It was encouraging to see our legislators get something right. This time they did something that really matters.


FAQs about the CBD Oil:

Is the oil working for Oliver?

It is too early to say for sure due to the “Honeymoon Phase” that  often happens with seizure meds. We can say that Oliver’s tonic seizures are significantly reduced and his words are slowly coming back. He is much brighter and engaged than he has been in over a year and we are overjoyed. It almost feels like re-meeting him again.

Will this law change anything with your travel?

No, we are still in the clinical trial in Boston and still have to travel to get the med. There is a slight possibility it could change after the initial year, but that is very uncertain.

How will NC families access the oil?

We aren’t experts, but it appears there is still a decent amount of ground to cover on how it will work. It will be a card/voucher that is given with the supervision of a neurologists. Our understanding is the Department of Health and Human Services will administer the cards.

How can we help?

Now we need movement on the federal level. This article is a great resource and explains the federal issue quite well:

http://www.washingtonpost.com/blogs/local/wp/2014/06/19/fairfax-frederick-moms-lobby-feds-for-medical-marijuana-for-kids-with-epilepsy/

Kneeling Down

I kneel down beside the edge of the shower, water is pouring down. I swiftly tuck a piece of hair behind my ear and sigh. I begin to run the soap over his not-so-small body for the 3rd time this morning. I watch him lean against the wall and enjoy the warm water pouring down on him. He leans in to drink the water and I smile at his playfulness.

I aim the sprayer at the mess to wash it all away. I chase the foulness off of his back and legs and into the drain. He tries to stand and in the midst of keeping him safe, I get water all over me. And as the water drips off the tip of my nose, the tears start coming down.

I turn the water off and reach behind me for the fluffy white towel. We have few left that are clean. Our washer has never done so many loads, now that the messes won’t stop. Our hot water never so needed.

I help him to not slip as he steps out. He is unsteady, but eager. I try to snuggle him in the towel, just like my mama did, but he won’t let me. He has never been a snuggler. He has always been a fighter.

I place the towel on our bed, lay him down and double diaper his 5 ½ year old body, the tall, skinny body that now weighs over 50lbs. He is compliant this time, resigned to the fact that the 7th diaper change of the morning is becoming routine.

I zip him into his sleeper and tell him it is time for a rest.

He holds my hand as he wobbles up the steps. Obedient and willing to follow my direction this time. Like clockwork, his rhythmic grunting resumes as we approach his bedroom door. It has been so long since I have heard an actual word come out of his sweet mouth.

He crashes onto his bed and pulls up the covers. He giggles as I sing him “This Little Light of Mine.” He giggles when the light goes under the bush and even more when it comes out. He is enthralled for a brief minute.

I realize that I forgot what his giggle sounds like. For despite the messes I’ve cleaned and will continue to clean, that beautiful little soul is still able to find joy. To laugh out loud at his clown of a mother. To not let his circumstances define his experience of the world.

I come downstairs and find Andrew has just returned with a fresh bottle of carpet cleaner from the store. I re-read the cleaner directions, but I’m not sure why. I have done this dozens of times in the past month. I kneel down again, I tuck my hair behind my ear and I sigh.

I scrub hard in circular motions, careful not to breath in the noxious smell of the cleaner combined with the work of Oliver’s angry intestines.

And then the anger comes, red hot like lava erupting from the core.

I scrub, I blot, I scrub, I blot

And I say out loud to Andrew, “Where is my #%@^# glass slipper?”

He laughs out loud, and he says, “That’s the title of a chapter in your book.”

Christmas Card Letter 2013

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

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...

Steroids...Here We Come!

Our appointment on Thursday was at 2:20. We actually saw the doctor at 5:20! It was a LONG day... Lauren was there with me which I am VERY thankful for. This is not a one woman sort of adventure.

I had forgotten that this hospital has a real, full-fledged Starbucks in it. A steaming caramel machiatto took the edge off the 3+ hour wait. Although the wait was long, I was really ok with it. We've waited 2+ hours before, so sadly this is more of a pattern than an exception! I kept thinking,"About all we can change is our attitude." There were so many sick kids around... How could I begrude a doctor who was trying to care for so many? I'm sure he wasn't playing video games in the back.

And despite the waiting, I can see beautiful things around me. I see moms and foster moms sharing ideas on chewy tubes and helmets. It is an unexpectedly beautiful scene. All these parents waiting and caring so patiently for their children (some very big now) who can do so little for themselves. The cheerful greeting of the front desk staff and just generally encouraging atmosphere. If that doesn't inspire you, I don't know what will. These parents are heros! Every time I'm around them (especially in a group like this), I feel so honored to be counted as one of them.

__________

Wednesday night, Oliver started to "break through" with his seizures after a solid week or so without any. The thing is, Ativan (the drug that probably made this seizure-freedom happen) is habit forming, and over time you need more and more to get the effects. This is why it isn't a long-term fix.

There are only two meds (from my humble calculations) that we haven't used to fight the seizure monster. We met with the new nurse practitioner before Dr. Mikati. She was trying to catch up on the over a year that we've been away from Duke. She was very nice and looked like a Barbie Doll. One of the bad things about waiting 3 hours is reaching the point when the doctors and nurses are stressed. They know how far behind they are, and it shows in what they do.

After trying to fill her in on the WILD ride that has been the past year, Dr. Mikati came in. He still has the same old-school doctor's bag that is monogrammed. After some small talk, he suggested we try steroids before the VNS. I wasn't expecting this, and yet I remember we talked about this with him in April 2011. There are 2 options for this, with one being significantly more expensive: Pulse steroids vs. ACTH. Pulse steroids requires a 3-5 night hospital stay. The other is ACTH, which requires me to give Oliver shots 1-2 times a day. If we do ACTH (which Dr. Mikati prefers because it usually is more effective), it will cost well over $100,000 for 8 weeks of shots. Many insurances just say "no", and ours could be one of them. It is "wait and see" regarding their answer. There are serious side efffects to each of these, which I am a bit stressed about. This is the reality of the situation. I am most concerned about the possibility of increased aggressiveness and sleep disturbances. Other kids we know on this have began to look rather swollen. These doses of steroids aren't like anything the average kid should EVER be on. They are intense! If you want to read more about them, go for it! I don't want to bore you with all this medical talk.


I spoke to the secretary Friday and I am hoping next week to have dates for the next steps moving forward. I think we'll be driving up and down I-40 quite a bit over the next few months. We want to get moving ASAP, since Oliver has been on Ativan for so long.

Looking Precious

We are with Oliver now. He looks precious. The Dr. said the surgery went well. It doesn't appear that the infection has spread yet.

Praise the Lord. The bone flap looked good as well. The incision was coming apart which needed to be repaired. Cultures from the fluid where sent to the lab, and we will know more about the extent of the infection once the results come back.

We look forward to talking through the plan with Dr. Duhaime tonight. Right now it appears we will be in here at least a few nights...

While this is the surgery outcome we hoped for, we are not out of the woods yet. The infection is still very serious and must not spread.

We feel very thankful right now! Blessed be the name of the Lord!

We ask for your continued prayers as Oliver moves toward healing.

And they were astonished beyond measure, saying, “He has done all things well. He even makes the deaf hear and the mute speak.”

(Mark 7:37 ESV)

Rough Night Continues...

Oh y'all our hearts are breaking. This is serious and we are scared.

Andrew just endured a "quickie MRI" with Oliver. He was so scared and Andrew had to hold him down. He couldn't even make eye contact. I think it traumatized them both. I sat outside and cried as I heard Oliver's screams. It didn't hurt, but I hate that he was scared.

The MRI is to help guide the surgery, which it appears will happen sometime tomorrow morning. The surgery could be rather simple (if the infection isn't bad) or long and complicated (if the infection is bad). Please, please join us in praying Oliver does not have meningitis. We are also praying they do not have to permanently remove the bone and put in a prosthetic (this has also been mentioned).

We are both a crying mess. We were told it is unlikely we'll get home on Saturday. I wish we were more rested for round 2....we had the finish line in sight...

The neurosurgeon is nice enough, but nothing like our Dr. Duhaime.

Your prayers mean a great deal.

Long Night Ahead

We have a long night ahead! We haven't had the MRI yet and have been told we are at least 6 hours from starting the operation. Yikes! That puts us around 1-2AM for the OR start time.

Currently Oliver is having a very hard time in this ER room. He is trying to bite us and is screaming on and off. I think he is way over this hospital stuff. We are trying to stay positive and be a team. We've already prayed that somehow Dr. Duhaime's input will come through even though she is on vacation. It will be hard to make big decisions without the doctors we have learned to trust. That is a luxury we probably won't have this time.

We'd love your prayers. This is one of those dreaded complications and anytime infection and brain are in the same sentence it isn't great.

Love to you all. Thanks for your prayers...we need them!

Adventures & Updates

Yesterday was a great day! We enjoyed our last morning with Gran and Grandaddy. We also loved seeing Andrew's Uncle Lud and Aunt Susan (they came up for dinner on Friday night from Connecticut).

We took Oliver for a walk to Copley Square and by the Boston Library. This area is truly beautiful this time of year, and the city is buzzing with activity. We met up with Jami, who lives in Wilmington and even lived with us for a few months. She was in town for a few days and brought me some yummy cheese straws :)

On the way home to the Farrell's, immediately after clearing an intersection, we heard tires squealing and very loud crash. Turns out a BMW had ran a red light and t-boned a Jeep Liberty, sending both cars spinning across the intersection. Andrew went to check on the drivers (who were surprisingly both okay), but it made us walk just a bit faster the rest of the way home!

Jami (with sunglasses) and her friend with us in Copley Square

Oliver continues to be more and more like his old self. The nights are slowly but surely improving, with him tolerating the sleep tent longer each time before joining us. He is getting a bit more sleep each night, and so are we. Boy, we need it!

This morning, while changing Oliver we noticed his neck was wet and there was fluid leaking from the back of his head. He is such a wiggler when we change him (and that has not changed, unfortunately!), and he scraped his massive scab. It was a bit tense for about 30 minutes as we debated calling the doctor about it. It is to be expected that this will happen from time to time during the healing process, but we are still a bit on edge. Now we have it covered with a bandage, and it seems under control. Always something to worry about...

I thought you'd like to know that Oliver danced again this morning for the first time while watching a cartoon! Perhaps we can capture this on video soon :)

He continues to have seizures, but there were fewer yesterday. We are thankful, and hope they'll be gone forever very soon! Please pray we can "calm and quiet" ourselves about the seizures and trust God to do what He will. 

Psalm 131

A song of ascents. Of David.

My heart is not proud, LORD, 

   my eyes are not haughty; 

I do not concern myself with great matters 

   or things too wonderful for me. 

But I have calmed and quieted myself, 

   I am like a weaned child with its mother; 

   like a weaned child I am content.

 Israel, put your hope in the LORD 

   both now and forevermore.

Post-Op Roller Coaster

Thank you a million times over for all your love and support during our hospital time. It was grueling and intense. We pray we'll never have to go through that again. You made it so much better.

Last night went well considering Oliver had his first night free of the hospital in 8 days. He slept with us which was wild and sweet. Bless his heart, he was SO tired.

Lets Start with the good news

This morning Oliver kept taking his diaper off. We didn't think too much of it until the squatted down in that position (you know the one, right?) Thankfully Gran noticed and said “I think you better take him to the potty.” I did and do you know what he did? He peed in the potty, then got a tissue, wiped and then flushed. WHAT IN THE WORLD?

We were all ASTOUNDED! We have talked about the potty a few times, but haven't even began to “go there.” We are thrilled. We aren't going to do potty training full force here in Boston but, we are SO encouraged. It means so much for his cognition and development :)

Also, Oliver has been saying words today that we have never heard. “Lock”, “Grandaddy”, “Park”.

In addition to these very exciting events we had a few downers too.

The first is we've seen three seizures today. I don't even know how to feel about that...

Second, Oliver has been having aggressive outbursts. Previously if he was anger he would have a tantrum but he would never hurt me. In the hospital we began to nice he was pinching us and biting. We thought this was because he was so frustrated.

Today on the way down (very steep) steps he went crazy. He was screaming, biting down on my shoulder (I have a nice bruise) and pulling on my hair. I felt like I was being attacked. It took two people to get him off of me. He repeated the same thing one hour ago. He has been screaming at the top of his lungs when he doesn't get what he wants. It is so piercing that you cover your ears.

We were warned to expect unusual behavior but, it is very hard to experience. I would say this has been the hardest part of the entire experience. I spoke with Dr. Duhaime and after talking for a while she did not feel like there were any neurosurgical issues. I am waiting to speak to Dr. Thiele.

So there it is...the roller coaster of post-op.

Your prayers are appreciated as we navigate this challenging time.

We continue to be thankful for grandparents and friends who are here to help us. Oliver continues to same some new words as we are slowly seeing the changes from the surgery.

We do have cable, telephone back up. The internet works but only via a cord...can you believe that...I actually have to plug in for the internet? Anyway as you can imagine that limits our online time so updates may continue to be less frequent as we work on getting that repaired.

Daily Update

Oliver's head was rewrapped. It came off. Now the head wrap is gone and the incision is uncovered. I get more and more used to it. It isn't all that bad...

This morning Andrew and I went to the Farrell’s for a shower and to do some laundry. Just walking in their house led us both to sigh out loud.

We returned and took what we had intended to be a 2 hour nap that turned into a 4 ½ hour nap. We sadly missed a visit from Beth (a Boston friend) and the good people of Chick-fil-a who brought tons of yummy food for us and the staff. I thought I would burst out into song after my first sip of sweet tea – y'all I have missed that stuff!

Oliver the wild thing has returned. He has been going bananas in the bed all evening. He is mostly comfortable as long as he has pain meds and the itching is controlled. After being hooked up to so much for so long we are grateful that tonight he only has a pulse-ox and one IV.

We have heard him say more words today, however there are many more we want to hear! We are thankful for every single one that reappears!

We have not seen any seizures as of yet. This is VERY promising. We are cautiously optimistic and also exuberantly thankful.

In other news we've reverted to the prune juice trick of last week. 16 ounces later no results. We don't want to leave the hospital until we get his digestive system back on track. So, if you aren't totally grossed out by it, pray Oliver would poop :) Sorry I had to go there but, we know each other pretty well, right?

As I write this, Oliver is still awake (10:45 pm). Will we ever get him back on his schedule? We are hoping for a restful night, but this is a hospital after all where alarms and interruptions are part of the experience. I am pining for my own bed right now, my quiet neighborhood and the comforting alarm of my coffee machine that doesn't ding until I want it to :)

We miss you all and can't wait to hug your necks! We continue to be grateful for your prayers. If you still have the energy (after that somewhat tacky prayer request above) please pray for a swift recovery and NO SEIZURES!

1 Corinthians 4:20

For the kingdom of God is not a matter of talk but of power. AMEN!

Peace to you tonight....

Revealing the Scar

Warning these photos are graphic so if you aren't into fresh incisions you might want to skip this :)

Happy Tears

Andrew here with a sincere shout out to the Prudential Laney Real Estate Crew...

Darn if you didn't make us cry...

We were keeping our emotions together pretty well, considering what has been happening. Everyone going through crisis knows how you do it. You get so sleep deprived and otherwise busy “managing the situation”, that you turn off your emotions a bit.  Even when they finally brought Oliver back from the OR, things were so chaotic we didn't sigh or weep.  We were still holding our breath.

Then Oliver opened his eyes...Then he said some small words...He is still in there...Our boy is still there.  We smiled at each other and said a prayer of thanksgiving, but we had a long night ahead of us yet. So we still held our breath.

This morning we realize it wasn't a dream.  He really is still with us!  We feed him some apple sauce and give him his meds with no problems. We begin to breathe, begin to sigh. Steph jumps on the computer to update her now world-wide readership...

I am lying in the crib with Oliver asleep in my arms, when Steph walks over with the Macbook and says, “You have got to see this.”

She shows me this picture.  Now, if you didn't work with me at Prudential, you wouldn't know that I have not been the most “present” agent in the office over the past months.  I have been operating from home, from Boston, from wherever...

The folks at Prudential have been so good to me. Constant emails, thoughtful gifts, cards, etc. Sweet hugs and eyes full of tears. It really is a special group of wonderful people.  It is so much more than I deserve, and I am humbled.

When we really look at the picture (taken during the weekly Tuesday morning sales meeting), we search the faces...We read the wonderful banner. These folks have been with us the whole way.  It touches us in a way that is hard to describe.  We both share a warm feeling that is, quite honestly, otherworldly.

This is the moment we let it go, and cry a happy cry.

Thank you Prudential, for being there for me.  For being there for Steph.  For being there for Oliver.

Post Surgery Details

Dr. Duhaime was very pleased with how the surgery went. Oliver did need a blood transfusion because his blood count was low. This was expected.

She took out everything that needed to come out without touching the motor or sensory strips! Thank the Lord! These strips were actually mapped further back in Oliver probably due to the tuber in the area.

No significant tubers were taken out because (as we have said before) the tubers themselves don't appear to be a problem; it is the tissue around them. When electrodes are put into tubers, they are silent (meaning they aren't the spark of the seizure). They are abnormal brain tissue, but the hypothesis is that the area around the tuber is the area of seizure origination.

They did leave a small ball of tissue that did not seem to be participating in Oliver's seizures. This area was left because (as we've said before) you can't put it back once it is out. Presumably, this area should be fine. The need to do another surgery seems less likely now than it did yesterday, since the eloquent cortex wasn't exactly where they thought it was.

So far all of Oliver's motor abilities seem to be intact, and he has said three words. We'll feel much better when he says more words and begins to act more like himself! We also have to remind ourselves it is less than 24 hours after the surgery, so there is much to still learn about Oliver's long term prognosis.

Oliver is in pain due to the new area of bone they had to cut. This is also why his eye will most likely swell shut again (sigh). The good news is they did not have to make a new incision, so the scar will remain the same as the one from last week. That is great :)

So now we wait to see if it worked. It is so exciting. It is amazing. We feel so blessed. We feel nervous, we are still holding our breath a bit...

First cuddle after the surgery

Go O-Team Go

3 things make me happy this morning:

#1 

These wonderful O-Team pictures!

Ms. Laura is Oliver's speech therapist and also goes to our church. We love her!

Grandma Diane looking like Arnold :) 

#2 

My boys cuddled in the bed together

#3

Oliver hasn't had a seizure so far. This is promising :)

My body full of fatigue but, my heart is bursting with joy and gratitude. 

One Hour

Oliver should be back in our room in about one hour. I CAN NOT wait to kiss that sweet face. My heart just bursts when I think about.

Waiting and Waiting!

Miller family praying for Oliver ths afternoon

Caroline playing dress up in  her Oliver shirt

June accesorizing her O-Team shirt. Cute necklace, girlfriend!

Holt playing in his O-Team Shirt

This is Kristin and her twins, Jackson and Charlie Claire. Charlie Claire (in the super cute glasses) went through a similar surgery this spring. Read more about her story on Team Charlie Claire. 

On the way to the O.R.

Daddy in his O.R. hat

Resting before entering the O.R. 

6 hours since we left the O.R. and we're all still waiting

Clarification

We just got a call from the O.R. (5:59pm) that Oliver is doing great and the mapping portion of the surgery is over. The nurse who called said there is probably at least an hour or two to go, but it was hard to say. So we keep waiting and praying!



We wanted to clarify what we wrote earlier about the frontal lobe:

The section being removed is not in the eloquent cortex.

However, in the area mapped as the eloquent cortex (face, tongue, etc.) they may, if possible, do a procedure (we can't remember the name) to cut off the way the seizures spread without damaging their function within the brain.  In the end, a resection of this area was not a risk we were willing to take at this time. Once a section of brain is removed, it cannot be put back. We hope that clarifies...

Dr. Thiele stopped by again. Seriously, we LOVE this woman! She was very encouraging about the surgery plan. She reminded us to not freak out if Oliver has seizures for the first few days after surgery. This is normal and does not mean it didn't work. It is simply the brain's response to the trauma of surgery. We'll have to keep reminding ourselves of this if the seizures do happen.  Also, since there will be a new cut of the skull for the additional frontal partial resection, the swelling around his left eye will return (that is a major disappointment).  Technically, he will have two "bone flaps" that will need to heal.  His cool scar will be a bit bigger than we thought!