Saturday, May 26, 2012

The Faucet


Imagine our life is a house. Let's make it yellow, with a deep front porch. Ferns swaying in the breeze. Rocking chairs scattered around, moving gently back and forth.

We happily bought it, and although it has some issues (all houses do), it has been a good house.

One day we discover we have a small leak, it's a trickle at first that doesn't seem too threatening. We try our best to stop it, but it can't be contained. We have plumbers and then contractors come and try to fix it, but they say we need to “take it up with the builder.” The drip, drip, drip of the leaky faucet can be heard in the surrounding rooms. Over time the trickle has turned into a small, yet steady stream. Slowly, (over time) it's waters have started to seep into our entire house. Within a year every room has damage.

We find out that the original builder of the house built it knowing this faucet would eventually leak. At first we are outraged. Who does that? Who builds such a lovely thing and yet knows it will have serious, potentially catastrophic damage?

After a year or two of working with professionals, we realized that if we want the faucet to be fixed, we have to take it up with this builder. Not surprisingly, this builder can't be found in traditional ways. It seems that he enjoys letting people search for him. A face to face meeting, where we could shake his hand and see his face isn't possible. This clearly is no ordinary house.

However, eventually we did find out that he left a book for us, to navigate this slowly evolving disaster.

The funny thing is, the book isn't a manual on how to turn off the faucet,

but rather how to work with the leak,

not against it.





We had been prepared for a simple fix. We thought there were would be a three step diagram and the leak would finally stop. We even had a worst case scenario in mind: a major renovation. Then we would be done with this matter and get back to our normal lives. We'd no longer have to constantly be patching walls and reassuring ourselves that “everything is going to be alright.”

I admit that what the book said was unexpected. Instead of three easy steps to a quick fix, it lays out a plan of acceptance? Seriously! It does not tell us how to fix the leak. It doesn't have any information about plumbing or the mechanisms of piping. Even more shocking; it reminds us to not give up hope that the faucet may one day stop leaking. The book even insists upon this. We have to both work with the leak as best as we know how and yet also keep hoping that a remedy will come along.

The book also shows us something we missed in the the first year or so we have been in the house. It says that one day, this leak (as difficult and unruly as it is) could one day become a much needed source of water.

Another year into the ordeal, we began to realize that we are known as the house with the crazy faucet. People began to hear of our “unlucky situation.” They were curious. Who has a faucet that can't be turned off? This doesn't happen in everybody's house.

They wonder what is with this mysterious builder and manual?

One particularly hot summer, the neighborhood had a drought. Water sources were very limited, and people were desperate for just one cool drop of water. Only the yellow house with all the water damage still had water. It seemed their water came from a 

much deeper well.

So they began to come and drink from our leaky faucet. What had once seemed akin to a curse was actually satisfying the real needs of others. It was beautiful to behold, the life giving nature of something that once seemed so devastating.

You see, the faucet brought people in who would have never visited before. It got people asking questions. It built community.

As we were reading the manual one night, it turns out we'd missed where it said the builder long ago put together a clean up crew of sorts. What? A clean up crew? This was weird. Well, we tried to keep an open mind....

It said that this crew would consistently be found on Sunday mornings. That is when they usually get together, but they would not be the plumbers we had expected. Despite that fact, many of them had faced their own leaky faucets, their own catastrophic damage. And even though they can't fix the faucet, they can help sort out the damage. 

And these crew members come alongside of us, on our darkest days and

They gently remind us that the faucet was designed by the builder....


to flood everything.

Wednesday, May 23, 2012

Good News!


Playing in Boston Gardens 
Oliver was fascinated by the construction going on at the condo next door



Full Boston Update:

Oliver's MRI looked stable with no more tumor growth over the past year.  This is great news! 

His EEG showed that he has tonic seizures that are hard to lateralize (meaning trying to find if they originate in the left or right hemisphere). Dr. Thiele said it is very difficult to say when and where the seizures are coming from even within the left side of Oliver's brain. We also found out that sometimes when he isn't having a seizure he is still having electrical discharges both sides. These discharges aren't helping Oliver, but it is hard to know how badly it is impacting him. Dr. Thiele said “seizures stoke these interictal discharges so, addressing the seizures is the best step to eliminating the discharges.”

Our plan to tame the seizure monster is to work with a new drug called Vimpat which is one of the very few we haven't tried. I think the count is something like 17 different medications we have tried for seizure control. If Vimpat doesn't do the job we are going to discuss the VNS. (Click here for a blog post I wrote a while ago that explains the VNS it is at the bottom of the post). There was also talk of trying the diet again. That diet almost sent me over the edge, so that would not be my first choice! 

Surgery isn't an option right now (fine by us) because, they wouldn't know what to remove. It was a surreal experience to see the MRI of Oliver's brain and all the areas full of fluid where his brain once was.

One of the other things that we learned is when to think about giving the rescue med and when it is not appropriate. We went to Boston with some serious questions about whether Oliver was actually seizing or just post-ictal. Dr. Thiele was able to see two different events and help me recognize the difference between the two. Looking back and forth between the EEG and Oliver as he seized, she gave me great insight. Most of what I have been worried about isn't a prolonged seizure so that is great! However, there is a real possibility of prolonged seizures as the years wear on, so having a plan, knowing a seizure from the post-ictal phase is crucial. I can relax a bit more now that I know the difference.

I got to meet another family who has a child with Tuberous Sclerosis. This is always a blessing. The child was a beautiful girl and talking to her mom and dad was incredibly therapeutic for me! The mom said “I feel like you are talking about my life...exactly. Like you have been in my house for years.” It is odd to create such a deep bond in the span of 10 minutes with a complete stranger. It feels like running into someone who has fought the same war as you, knows the language, knows the lifestyle, knows all the failed missions and endless attempts to suppress the enemy (TSC).


As far as life in Wilmington, we are doing well. Oliver seems to be blooming in the language department. It has been fun to hear him singing and speaking more. He is also connecting with us more when we interact with him. Of course, he is always up for a dance party, which we seem to have daily. He is an enormous burst of joy and we are so thankful for him!

Oliver with Janise (Physical Therapist) and Danielle (Medical Eq. Supplier) who both helped him get this awesome stroller
We are also thankful for the intricate, awesome “Dream Team” that we have assembled over the last (almost) 2 years. All the way from our Occupational Therapist, to our ABA Therapist, to our Nanny we have a comprehensive plan for taking care of Oliver and meeting his needs. Now that we have CAP-C services and Medicaid (which was the final piece to the puzzle) it feels like everything is manageable on the long term! What a gift and a privilege to get to have the help of so many outstanding people!

It finally feels like we can exhale just a bit and at times I honestly thought that day would never come. Thank you, Lord!

Friday, May 18, 2012

Out of MRI

Oliver is out of his MRI. They did an extra sequence which could mean lots of things; we'll see.

We go back to meet with Dr. Thiele after Oliver wakes up to talk results, treatment plan, etc. We did see her this morning, but Oliver was so grumpy (no food for the MRI) that I couldn't focus. I am anxious to get back over there and find out the details.

I also was able to get a visit in with the child psychiatrist here, Dr. Newberry while Oliver was in the MRI.

So far so good...he looks like a little sweetie.


Friday's Agenda

We meet with Dr. Thiele any moment now and then Oliver is off for his MRI of his brain. BCBS did not approve the kidney scan...sigh! Part of why we do the MRI of the brain here is because they can do the kidney at the same time, which they don't do at UNC or New Hanover. Anyway, no need to get my panties in a wad...trying to be thankful for all the medical treatment we are getting.

In addition there is a $7,000 bill from Oliver's brain surgery in the fall that is being disputed between BCBS and Mass General. Guess who has to get in the middle of that?

Forgive me for complaining....somehow this part of being the mom of a special needs child does not get easier, just more and more exhausting!

After the MRI we will meet with Dr. Theile again this afternoon to discuss those results. I'll try to write a coherent update sometime this evening.


Thank you for your love and prayers on this wild ride called Epilepsy. Forgive my writing....my editor is busy working on Iron Man right now :)

Thursday, May 17, 2012

Climbing Trees


Despite being in Boston right now my heart is always in NC!



 I could not resist climbing up in this Live Oak tree and taking a photo. This cool tree is on the waterfront lot that we just listed in Hampstead, NC. I kept thinking of the visitnc.com photo below. 

Check out the great video Andrew made of this lot on our home page www.thelanierpropertygroup.com



Wednesday, May 16, 2012

EEG Up and Running

Oliver is all hooked up to the EEG and he has already had a typical seizure.

Stephanie has been a total dream! So helpful :)

We've already seen Dr. Duhaime (the neurosurgeon) and will see Dr. Thiele tomorrow.

Thank you for all the prayers and well wishes!

Tuesday, May 15, 2012

Arrived

We've safely arrived in Boston. We are being admitted tomorrow at MGH for Oliver's 24 hour EEG. He is having a moderate amount of seizure activity, which is good considering we want data from the EEG. We are also thankful that BCBS approved our request after an initial denial.

As always we are very appreciative of the hospitality of the Farrell Family. We continue to cherish their friendship and love seeing their family grow. In fact, I need to run so I can see their three adorable children do another "show" before their bed time.

Friday, May 11, 2012

Didn't Skip A Beat





Our small group from church had a party at the Powell's house for Cinco de Mayo. Oliver was such a good boy with his friends. He did not bite or pull hair once! We did have a brief scare when he choked on some of the pinata candy. He tried to eat half a piece of bubble gum with the wrapper still on. Andrew was totally calm about it all as he got Oliver breathing again. Andrew and I work well in those kinds of emergencies. It really helped to have all our friends right there saying "you are doing the right thing." 

I think everyone took a deep sigh of relief when the candy chunk came out. Oliver wasn't phased one bit by the drama. He immediately went for another piece of candy. The kid did not skip a beat. 
Andrew was immediately struck by how much older Oliver looks in these pictures, and I agree...time really does seem to accelerate, doesn't it?


  We will soon make our journey to Boston, of course...Sadly, Andrew can't join us because of his work commitments. Luckily, our sweet college babysitter (also named Stephanie) is available and able to accompany me and Ollie. You can pray that everything will go smoothly and I won't bite her head off during the tedious 24 hour EEG!  


Here are Caroline and June. The most adorable twins ever! 





Here is sweet Hadley. She is growing up way too fast...I guess the Carpenters will just have to have another girl! 




Thursday, May 10, 2012

Our Real Estate Website is LIVE!

TA-DA! Our real estate website is finally up and running. It makes sense that this happens near Mother's Day because I feel like I have given digital birth. (I hope that wasn't too graphic?)






P.S. Check out the blog on the site for a cute video of Andrew rehearsing his video with Oliver. 

Saturday, May 5, 2012

Happy Dance

The happy dance is happening in the Lanier Household today! Yesterday was a great day! We found out that we were APPROVED for CAP-C services! This is a HUGE blessing and means the financial strain of Oliver's medical expenses will be decreased. It also means that he gets Medicaid to supplement our BCBS, which in layman's terms means he'll be able to get more speech, occupational and physical therapy! Our hearts are so full of gratitude for this answer to prayer!!! This is a game changer.

In other good news, the ABA therapy that we have begun to implement is already helping. Oliver has a therapist with him at school every morning until nap. More to come on this once we get the final behavior plan in place.

And as I keep the good news going, I'm happy to report that last Sunday Oliver jumped for the first time. Like with two feet, in the air, at the same time! He has NEVER done that! It was so awesome to see him jumping, like a typical kid, and then plopping onto his butt. Laughing and smiling the whole time! Andrew and I just stood there with our mouths open. Oh how we have waited to see that!


Due to Oliver's needs, my full-time real estate work, and Andrew's opportunities in the film industry, we have decided to end our property management services. This was a very hard decision for us, since most of our owners are close friends or family. All of them have been so gracious to us, which has been such a gift. We deeply appreciate their understanding, such sweet folks! Thankfully, we've found a great new company that will help our owners have a seamless transition.

To be honest, it feels so good to have only one professional focus for me. I can use 100% of my work time on residential real estate, which I L.O.V.E.! This also frees me up to have more time to take care of Oliver's needs, attend the endless appointments, and fly to Boston. The change is good for Andrew, because he can to work on film projects and continue with real estate. This feels sustainable for our family over the long term. We are thankful to have finally made this decision, and for the support of our friends and family.



Next weekend, I am looking forward to a weekend in Asheville with my mom and grandmother for Mother's Day. The three of us have always discussed staying at the Grove Park Inn, and I decided this year is the time. As Andrew said, “You are going to treasure this time with them for the rest of your life.” Indeed I will. I am already counting down the days...

Lastly, we are (finally) launching our Lanier Property Group website this week. I feel like I am giving digital birth since I've been working on this forever.


Tuesday, April 24, 2012

We Haven't Disappeared...





The kid loves his wagon

Verbatim from Dr. Thiele's email about Oliver's CT scan (which is 2 1/2 week old news at this point...sorry!):

"...just looked at the CT scan (we just got it tues pm), and compared to his last MRI here------ventricles look very stable, and no evidence of a subependymal giant cell tumor.  His ventricles are a little asymmetric (and have been) with the left a little bit bigger, and he does have a subependymal nodule on the left that looks calcified on CT.  so good news....."

Clearly we are grateful for this news and look forward to discussing it with her in more detail when we go up for our visit in May. 

Easter Smiles

We had a nice Easter and enjoyed spending time with my family who was in town visiting. Oliver liked all the extra attention they gave, and I loved the help with our ever-expanding laundry pile! He continues to thrive at his preschool and I keep falling more and more in love with the staff there. Shout-out to Ms. Beth & Ms. Lauren...you are my heroes! 

We are also VERY thankful to begin ABA therapy with Oliver next week. I (finally) found a provider in Wilmington who is going to help us implement this specific form of behavior management. Sadly, this is not covered by our insurance, but we feel like we have to try something to help him (and us!) Lord knows we are out of ideas (as are the folks at the preschool, the grandparents, the therapists, and the church staff). Hopefully, this will be our slam-dunk!?! ABA requires intense cooperation from everyone involved in Oliver's life, so you can say a prayer that we have the stamina to stick to it. The beautiful thing that this has given us is hope. Hope that we can indeed care for Oliver's many needs before he gets too big and we can no longer physically control him.


3 generations


Lastly, my apologies for my long blog hiatus. I have found that balancing full-time work, part-time case management for Oliver, and mother/wife duties a serious challenge. 

Considering that challenge, I am so happy to report that I am loving real estate. Honestly loving it. 

I am also excited to start the planning for our summer women's bible study at our church. Last year I hosted it in at my house (so fun!) but when we reached 40 women, my seemingly spacious living room suddenly felt like a sardine can. This year we're moving it to the church and will be working through the book "The Praying Life" by Paul Miller. It is hands down the best book I have ever read on prayer; so practical and relatable. 

Thursday, April 5, 2012

CT Scan and Prayer Requests

This week Oliver is on Spring Break. We are trying a new medication (Intuniv) to help with his sensory issues and so far I am not optimistic. I feel like I have been in an IronMan competition the last few days. Honestly, I haven't been this physically exhausted in...well...forever.

We went to visit my family in Concord earlier this week and Oliver was very happy to have hours of tractor rides. Here is a little picture of Oliver in his overalls with his Papaw.




Today at noon Oliver is having a brain CT scan here in Wilmington. We are praying for good results.


A quick reminder of what is going on in his brain:

The tumors on the outside of his brain (Cortical Tubers) do not grow, but they cause the seizures. These are technically called tubers and Oliver has well over 30 very small ones. They could be removed, but since they are everywhere that would not make sense. The tubers themselves do not cause the seizures, rather the tissue around the tuber gets irritated and then a seizure is born. The picture below isn't his brain. I am not that fancy, but a thought a visual might help? 



The tumors on the inside of his brain (Subependymal Nodules) can grow and (rarely) become life threatening. He has three of these tumors in his lateral ventricles. The ventricles are that "X" shape on the photo below. Oliver's are very small (as of his last scan 6 months ago).  These can become dangerous if they grow and block his spinal fluid.  Only 15% of nodules grow to a point that is considered dangerous.



So when we look at Oliver's brain there are always two different areas we are monitoring closely.



In case you are new to Lanier Landing, these tumors are NOT cancerous.  Also, you should know Oliver had brain surgery last summer to remove areas of his brain that were constantly producing seizures. 50% of people who have this surgery become seizure free, Oliver was not part of that seizure-free group. His seizures remain and hence his development is significantly delayed.

If you have more time than most here is a link that explains in more detail the brain involvement in TS:
http://www2.massgeneral.org/livingwithtsc/affects/index.htm

We'll keep you posted and continue to be honored by your prayers and love.

Thanks for not tiring of our endless neediness.




Lastly, would you also pray for one of my high school friend's wife? His name is Phillip and his wife's name is Wesli. They are a beautiful family aren't they?

Wesli is in liver failure and #1 on the list to have a transplant at UNC. She is about my age and the mother of three young children. If you'd like to pray for them you can find out more here.

Tuesday, March 27, 2012

Unlock the Cure: The Tipping Point in the Battle Against Tuberous Sclero...



When you fund TS research you are helping find the cure for a lynchpin disease. Watch to learn more.

Monday, March 26, 2012

Epilepsy Awareness Day




As I pulled on my purple silk blouse this morning I knew

just somehow knew

that the seizures would come back today.

We've experienced a break for the past five days (thank God)


So today, on Epilepsy Awareness Day...

I find myself on the floor holding my convulsing child.  Cuping his head to buffer between the wood floor and the roaring seizure monster. Whispering prayers and sweet nothings into his little ear. Brushing a wisp of his blonde hair to the side, as I remind him that "it will be over soon".

This is life with Epilepsy. It isn't pretty, and as much as I love an awareness day,
I have to admit I long for the day when the only purple I see is on

Christ the King.





Today I hope you remember (as I force myself to) that one day Oliver will be truly seizure free. He will have a redeemed body without any traces of this terrible disease.

There is more hope in that promise than any purple shirt can offer.


Sunday, March 25, 2012

Retiring the Hazmat


Last week the seizure monster returned. In a BIG way. Last Wednesday was the worst day of seizures I have ever seen.

Since then we have changed around some meds and added in Ativan to help stop the “cycle.” I was on the phone with the Boston team for hours last week. Thankfully the Ativan seems to have worked, and the seizure frequency has slowed.



Due to all this seizure activity (and because it is time) we are going to be heading back to Boston sometime in May. Oliver will have another EEG (his 10th!) and a kidney and brain MRI.



These are Oliver's new sneakers. They do seem to help support his ankle, but getting those things off causes me to sweat. It is such an ordeal. So, if your little person can wear crocs and it takes you 10 seconds to get them on, say a little prayer of thanks!



Last Sunday the race was on TV and Oliver was really into it. It isn't surprising since he loves cars, loves loud things and he has a little bit of my redneck heritage in him (thanks to his mama).



Andrew's parents have been helping out a great deal. Gran was the one who introduced us to the book, "Snuggle Puppy" and it has since become Oliver's all-time favorite book.



We had our Medicaid Assessment appointment last Thursday. It lasted two hours and I probably spent at least another 2-3 preparing for it. They have 45 days to respond. At this point it is in God's hands, although if they deny us I will be a hot mess.  If we are approved we'd get a C.N.A to help with Oliver as well as respite care and financial help with medical equipment. It would be HUGE!


On Wednesday of this week I passed my national and state real estate exams. I am completely geeking out right now on all things real estate. I can't wait to help Andrew with transactions and launch our website and blog we've been working on.



Lastly, I have a tip for all of you who have sensory seeker kids. We've had serious issues with Oliver getting into his diaper. The carpet cleaning people have been here twice and I can't tell you the number of melt downs I have had other this issue. But, I have a solution for you, dear friends!

Here is what you do.

Go to essentialwhites.com where they make TodBods. I just ordered Oliver some sleeveless ones for the summer. Now order their onesies. They come in a nice little package too :)

 

Put that on your child for bedtime/naptime and then put on a zip up sleeper BACKWARDS. (We cut the feet out of the sleepers because when it is backwards it can cause your child to trip.) In the dancing picture above Oliver is in this get-up.

I guarantee you, your child won't be able to get in his diaper. Knowing I don't have to deal with a HAZMAT issue after every nap/every night has been an enormous relief!