How Do Others Do It?

As we prepare for our trip to UCSF, we've discovered a few things we'd not thought about before:

1. It's going to be near impossible (this time around) for the four of us to be together at any given time during this stay. In fact, Rick and Eli will be dropping Renn and me off at the hospital, and we will not see them again until all the tests are over. Yuck.

2. San Francisco gets a lot of money from charging for parking. Holy. Cow. And, honestly, I've got to hand it to that city... It's such a great place with not a ton of room left in it, why not charge people to take up more space? Brilliant! I need to implement this idea for all the toys in our house.

3. We underestimated the costs that we were about to accrue.

I suppose that it was inevitable, right? I mean, this is about to become the biggest deal of our life together as a family, and of course, it's going to cost us.

We are very lucky to have the medical insurance that we have. Believe me, I am well aware that it could be FAR worse, and there are many out there who don't have any insurance at all. But, with the rising cost of each co-pay, of gas driving to and fro, of each prescription, and then what we imagine the surgery is going to cost... Y-I-K-E-S! It really adds up.

I am planning on doing some research on this topic, to see what other families do in situations like these. I've already gotten some great feedback from some friends of ours on what to do, but I want to know the success rate. What do parents do when facing those kinds of bills? What are the levels they reach before they just can't pay another dime? Which organizations do they/can they REALLY turn to?? How do other parents do it?

I'll be back sometime soon with more on this topic. I'm super curious, and eager to learn.

 

*******

 

If you have endured such a situation, and/or have good input or advice, please either comment below, or email me at: bethany(DOT)telles(AT)ymail(DOT)com. I'd love to share your story! Thanks!

A Merry Christmas, You Will Have

As we wait for Santa to bring us our new lightsabers, and many other intergalactic joys, we wanted to wish all of you a very Merry Christmas!!

 

 

Your love, support, kind words, and generosity has been such a gift this past year, we truly need nothing under our tree! May God's deepest and truest blessings be upon you, as you celebrate with the ones you love.

Luke 2:14

"Glory to God in highest heaven, and peace on earth to those with whom God is pleased."

 

Merry Christmas!!

 



The Next Step

At this very moment, Renn is in the middle of a large, rapid seizure. With eyes fixated on mine, he's firing off a dozen questions about every twenty-five seconds, and is jerking with both arms, shoulders, and head. We call this his "restart".

Have you ever seen cartoon robots going along on whatever show you're watching, and how sometimes they'll get wet, or misfire electronically, and kind of zip around really fast, stop, and start over as nothing had ever happened? (Fyi- I searched for clips of what I'm talking about, to give you an example, but apparently I'm crazy, and they don't exist!) That's what Renn is like. With each jerking movement, he "starts over" and has new questions, new ideas, and new conversations. It's heartbreaking.

So, I just heard from his doctor...

Let's call her Dr. Amazing, shall we?

Dr. Amazing let me know that she thinks that the Video EEG Renn had in July, may not have gotten good enough seizures that can help us determine what is going on on the inside of his beautiful skull (and to be honest, I COMPLETELY agree!). So, she said, "What I'd like to do is go ahead and get another one, that way we can be sure what we're looking at. He'll need to stay as long as it takes to get several bad ones. We might even take him off Lamictal, all together, to get them."

So, January 7th, it is. Renn will be admitted to UCSF, and will endure another Video EEG, and probably a few more tests, including the MEG, and PET Scan. He will be missing quite a bit of school... And since he's already behind, we are a bit concerned.

But, God knows... And God is making things happen.  And we have Christmas all to ourselves, with our little Jedi. That alone, is one giant answer to prayer.

 

*****

 

Psalm 86: 1-7

Hear me, Lord, and answer me,
for I am poor and needy.
² Guard my life, for I am faithful to you;
save your servant who trusts in you.
You are my God; ³ have mercy on me, Lord,
for I call to you all day long.
⁴ Bring joy to your servant, Lord,
for I put my trust in you.

⁵ You, Lord, are forgiving and good,
abounding in love to all who call to you.
⁶ Hear my prayer, Lord;
listen to my cry for mercy.
⁷ When I am in distress, I call to you,
because you answer me.

As Close As Han and Chewbacca

There are service dogs for just about everything a human could need. There are seeing eye dogs, Diabetes Alert dogs, Rehab therapy dogs, Therapy dogs for our military suffering from PTSD... The list goes on and on. Imagine the need, and there is a powerful pooch filled with love and training, to help you through.

Not to my surprise, there are also Seizure Alert Dogs. They have been trained to sense seizures in their human, sometimes even as much as forty-five minutes before a seizure occurs! There are many articles that address them, (I'll put the links to the ones I've found most helpful, at the bottom of this post) and I've found that they are especially important to children battling Epilepsy.

Yes, they're great for recognizing the seizures. But in my little, not-so-informed-yet opinion, I think that it's the mere fact that the kiddos who deal with their illness, just need a good friend; A non judgemental, loads of fun, happy-go-lucky, tail wagging friend. And what's incredible in our family is that by total accident, Renn has just that.

From the time Renn was born, he had a best friend. His name is Roscoe, and he's our Australian Shepherd. To say that Roscoe is a "great dog" is a gross understatement. He is by far the most gentle, lovable, puppy-like nine year-old dog, alive. From the time Renn could crawl, Roscoe was the jungle gym of the family. But often you'd see these two in   <--- this position you see here.

They've shared a bond that I honestly didn't understand until this year. You see...

Roscoe also suffers from seizures.

Renn and Roscoe are so very close. Roscoe has always seemed to understand Renn, and there were times that I was a bit jealous. And when Renn's seizures started this year, it broke me in half when it hit me... Roscoe has always known.

When Renn has a seizure, now, Roscoe follows him around. And if Renn sees his pup, he'll start loving on him, and the seizure ceases. It's incredible.

I can't say that we have a Seizure-Alert Dog... But we do have a pal that helps our sweet boy smile, everyday.

To watch them together, I imagine them being as close as Han Solo and Chewbacca, flying in the Millennium Falcon, searching for their next bounty. And it makes me feel fantastic that at least someone understands what Renn is going through, and can help him on a totally different level.

****

 

If you are curious about Seizure-Alert Dogs, visit EpilepsyEpilepsy.com or EpilepsyFoundation.org for their take on the sweet doggies.

What to Do While Waiting

Today is not just another Saturday... It's the Saturday after a tragedy that tore so many families a part, that left the nation in tears, and had all of us hugging our kiddos extra tight.

It got me thinking about how we had just gotten our news, and how, in my backwards stages of grief, I was already angry and beginning to wonder if it could get any worse for Renn. Obviously, I was hit with a harsh sense of reality.

Some parents received the worst news imaginable, yesterday. And my heart aches so much for them. So, while we wait on our own news from the Neurologist at UCSF (we must wait until Tuesday, because we heard from the NP at UCSF last night, and apparently Renn's doctor got stuck in a meeting yesterday, so she wasn't able to get back to us as promised. The NP apologized profusely, but said that there is a huge conference filled with Pediatric Neurologists and Radiology specialists that the doctor wants to take Renn's MRI and EEGs to, on Tuesday, at 8:00 a.m.), we are making special cards for the students affected by the horrific events, in Connecticut.

Will you join us? We find that what we do with our time while we wait for things, can shape the way you take the news that you're in fact waiting for. 

Please send cards and love to the kids at Sandy Hook Elementary School.

Make a difference.

Sandy Hook Elementary School
12 Dickenson Drive
Sandy Hook, CT 06482


Thank you.

In a Galaxy Far, Far away...

Hello, everyone. This is the first post, of a new blog that I hope will generate lots of love. This blog will be all about our adventures dealing with our 5 year-old son's Complex Partial Epilepsy.

I cannot promise you that it will all be laughs, fun, and games. But, I can promise that it will be real.

A quick background:

My husband, Rick, and I have been married just about eight years. Renn came first, in March of 2007, then Eli joined us in February of 2009. We are a highly active family, that rarely slows down. Sure, we take time to smell the roses, but it's usually done in a drive-by fashion! We love to be outdoors, and to be together. We live in the Central Valley, in California. We hope to someday move somewhere a bit more spacious, but for now, we're thankful for where we are.

Rick has a job that we can't talk about, and boy-oh-boy, are we proud of him. He loves the Lord, and that's his best quality. He's strong, funny, has his degree in Biology, played trumpet in the Fresno State marching band, and can handle pretty much any task placed before him. To say that I am a lucky gal, is an understatement.

I am a children's book author, but am also honored to be a stay-at-home mom. My family is my world.

Eli is a vibrant child who has been getting the short end of the stick, lately. But, I don't think he notices. He's a firm believer that he will rule the world one day, and I can see it coming true. He's strong and funny like his daddy, and is so lovable, his hugs will rock you to your core.

And that brings us to Renn...

Renn. Loves. Star Wars. And so, he is our little Jedi. No disrespect to Mr. Lucas, but Renn is a bigger and better Jedi than Yoda, himself. He is brave. He has a strength within him at 5 years old, that I simply do not understand. His journey with Epilepsy began in March, and you can read all about it HERE. But for those who followed back then, now is the time to share what happened yesterday.

As most of you know, yesterday we traveled to UCSF for what we thought was a simple introduction to his new doctor, and a consultation for a better Video EEG. However, when we got there, the story played out quite differently.

Long story short (okay, I'm skipping the introductions, and each time we begged,"Boys, please sit down!"), the doctor told us her plan. First, she was going to look over Renn's MRI and EEGs. If she thought that we needed to re-do them, then that would be the first step. If not, or after we re-did them, we would do one of three things.

1. We would go straight to surgery to remove anything she was able to find on the MRI. The first MRI showed nothing, but in the event that the UCSF MRI was better, and she saw something, then we'd take care of it.

2. (And this is where it gets quite scary) We will to something called a MEG (can't remember what it actually stands for, as I was about to throw up at this point in the visit), which is basically a magnetic view of his brain so we can pin point where the seizures are coming from. Or, we'll admit him to the hospital, take him off his meds, and inject a dye into his body every time he has a seizure. Once we pin point the general area, we move onto the next step...

3. They will take him into a two-part surgery. First, they will remove part of his scull, and attach the electrodes to his ACTUAL brain, to determine the precise location of the seizures. After that (not sure if it's weeks later, months later, or if it's during the same surgery- as I was pretty much a blubbering mess while she explained this), they will have a second surgery to remove whatever it is that is causing all of this.

The kicker? The surgery only has a 50-60% chance of changing anything.

That's. It.

We now have a tough decision to make. How do we choose between allowing our little boy to undergo such a HUGE surgery, or not giving him the chance at a "normal" life?? If he continues without surgery, he will not get a driver's license. He will not be able to grow up and become a Police Officer, like he so desires. And that kills us. We've simply run out of medications, now... So, we're taking on Master Yoda's infamous advice...

 

"Do or do not. There is no try."

So, as we go along, please join us. Please pray for Renn, and all the millions of others who are battling this disease. Ask others to do the same. And share Renn's story! In fact, please share any information that you feel I've given, that could help someone you know.

 

Renn is a Jedi, alright. And he's going to pull through... God has the biggest and best plan set in motion for his favorite Jedi. He says so, in Jeremiah 29:11. And we're grateful for that promise.

 

Thank you for joining us on this journey...

 

 

 

...more to come.