Labor Day lake and why we heart UCLA

A few years back, we went in halfsies on a boat with a friend of ours.

Now, when I say boat, don’t picture one of those shiny boats with fancy paint schemes and big speakers.

No, we own a 1970something boat.  A rad boat that works like a champ.  A boat that we don’t have to be neurotic about kids and sandy feet in.  A boat older than us.  That we own half of.

But it didn’t matter.  Because we had visions of being the “lake family”.  The family that spent weekends on the water.   The family that tent camped constantly through the summers.  With the kids that could wake board by their sixth birthdays.   Babies sleeping in the cool shade to the sound of lapping water.

That was the plan.  That was our little vision for our family.  That was how we pictured summers.

Sun kissed babes and boat exhaust.  Just going for it.  Even if it was hours of work to get packed up.  Because the return was worth the investment of hassle.

Enter a sweet girl with Cerebral Palsy…but more importantly, with a severe form of Epilepsy.

Sure, wakeboarding might not be in her future…and crawling around on a dirt floor might be difficult…but the real problem are her seizures.

You see, for the vast majority of people with Epilepsy, you just kind of wait the seizure out.  It runs its course, and stops within a few minutes (2-15 minutes seems to be the norm), and the sufferer goes home to sleep off a gnarly headache.  For the others, a dose of rescue meds stops things.  It isn’t an easy or simple life, and I don’t want to belittle the experience that others have with the disorder, but by and large it certainly isn’t life threatening. (Please keep in mind that this is a gross generalization for the sake of quick background.  If you’d like to learn more about Epilepsy, go HERE.)

For my little girl, while she doesn’t seize very often (she’s had a total of 5 in two years)…they are INCREDIBLY difficult to stop.  While we don’t know for sure, we don’t think they would stop on their own (ever?)…and for us, seizures always mean a 911 call, a trip to the emergency room, MULTIPLE rounds of medications…and hours of seizing.

Yes, hours.

The shortest seizure Jill has ever had was 45 minutes.  The longest lasted off and on for 3.5 hours.  The paramedic was shocked when he asked…and admitted he had never had someone say they seized that long.  He was used to people giving answers in the minutes…not the hours.

Long story short: Jill’s seizures are quite literally life threatening.  She needs medication.  She needs a lot of it.  She needs it as quickly as possible.  (The longer a seizure lasts, the harder it is to stop.)  Seizures are a big big BIG deal for her.  A scary big deal.

And so POOF went our family summer visions.  We can’t be that far from a hospital.  Even helicopter airlifts take way too long to get to most camping locations.  It just wouldn’t be safe.  The cost too high.

Luckily, we do have a small lake nearby that is close enough to town that we can sneak away to for the afternoon.  It isn’t impressive, but it does the job when we need some time together and the warm weather beckons.

We packed up the brood, brought along cousin Nelle and Auntie Marcia (pronounced Mar-see-yah…not Marsha), and spent an afternoon playing and loving.

It was a nice getaway.  The kids were angels.  We all had fun.  It was our family vision.  For an afternoon.

We had just been down to the UCLA Epilepsy Center the Thursday before.  Our neurologist had studied there, and she wanted a second opinion.  A second opinion from world renowned pediatric neurologists at a world class facility.  After all, “Jill is one of my top three most complex cases…I just want to make sure I’m not missing something.  That there’s not something else we can be doing.”  I love her humble spirit.

Down to UCLA we went, and met with a sweet man who I wanted to invite over to our house for a BBQ.  God is so good to us.  The resources we have available are overwhelming.  I will never understand how He blesses us so consistently…when I am so consistently disobedient.  Grace is an amazing thing.

So what did Dr. Nice Man have to say?  Well, he wants more testing done.  High end MRIs, PET scans, EEGs…24 hour monitoring…even on videotape…and hopefully even eliciting a seizure.  Lots and lots of data on Jilly’s bitty brain.  Data he needs to collect over a few day period…in the hospital.  2-4 days of 24 hour data collection.

From there, all of the testing will be reviewed.  And we will assess the next step.

One of which could be brain surgery.

Not in my wildest dreams, friends.  Not in my wildest dreams.

While the thought of my sweet girl having brain surgery makes me want to vomit…the truth is that if the result is Jilly living a seizure free life…well…where do I sign?  Someone find me a pen…and then hold my hair back because I’m gonna lose my lunch.

Not kidding.

Would it be horrific and possibly one of the hardest/worst times of this mama’s life?  Yes.  Yes it would.  I cannot fathom the recovery from that kind of procedure.

But the pay off would be worth it.  Tenfold.

For now, I await a phone call from the brainiacs at UCLA to schedule our few days of testing.  It sounded like we would be admitted in a few weeks’ time.  A nursing newborn will make my few days there…interesting.

I don’t quite know what the testing will show.  I don’t know if surgery will be the suggested route.  I don’t know what to expect exactly.  But I do know that that sweet doctor said to Andy and I “You two have to mentally prepare yourselves for the possibility of brain surgery.  But just know that often, when seizures are this difficult to control, and they begin so young…there is usually an underlying cause…that we can fix.”

I’m a mix of excited/nauseated/terrified/hopeful.

I’m anxiously awaiting that phone call. I just want it all over with.  Whatever “it” may be.

But you know what?

God is good.  Always.  No matter what.

That’s about the only thing I know.

 

 

 

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jeannett
I'm a mom to four. A wife to one. I believe in story. I love telling you about mine and would love to hear yours. There's really no sense in wasting our suffering and not sharing in each other's joy. We're all in this together...even if it doesn't always feel like it.
jeannett

Comments

  1. 1

    Oh how my mama heart goes out to you. Both of my boys had issues when they were born. We’ve had some NICU stays and a couple of surgeries. I know the feelings/thoughts that go along with having a child go into surgery. I can only imagine how intensified those are with the possibility of brain surgery.

    I oh so hope and pray some answers can be found for Jill. And that they will lead to her having a long, heathly, fulfilling life. You all will be in my prayers. <3

  2. 2

    oh how I agree with you – God is good (so good) ALWAYS no matter what!!

    I needed that reminder AGAIN – thank you for posting your heart – the gut wrenching stuff that makes us who we are! I LOVE the hope you have in Jill’s condition and the treatment. And yes, I too would be ready to vomit at the mere suggest of brain surgery on anyone I loved, let alone my 2 year old child!

    Praying with you and for you all!
    xoTiffany
    tiffany day´s last blog post ..Four in One

  3. 3

    Praying for you all as you go through this! We have some very close friends who’s sweet girl (just turned 3) had horrible seizures and ha the same type of studies done over 24hrs… She seized several times and they were able to find out which area of the brain was affected and do surgery! She’s gone several months now with NO seizures!! Praise the Lord! She’s still very delayed in speech and moter skills, I think she was diagnosed with global delay. I’d love to put you in contact with them if you would like!
    Candace´s last blog post ..Insta- Friday!

  4. 4

    My heart goes out to you and your sweet girl. My son has a slightly different form of CP that also puts him at high risk of seizures (but thankfully we haven’t had but one small one yet). I belong to several FB groups for kids that have had in utero strokes and resulting CP and many, many of those children suffer seizures (and many of them have had to have brain surgery). I don’t mean to be difficult but all seizures are serious. Even short frequent seizures can cause brain damage, they can progress into larger, longer seizures, they can be difficult to control with medication and the side effects of the medication can be tremendous. A person with epilepsy, even on medication, is always at risk for a larger more serious and life threatening seizure. Simply put, there is no “easy” epilepsy. A sweet little boy we know is having brain surgery tomorrow because he seizes every day and although they don’t last hours they have not been able to control them with medication. All seizures are serious, all seizures damage the brain, and unfortunately seizures are never really controlled….

    • 5

      Hi Torey!

      Thanks so much for commenting and for your sweet words. I did want to respond because I in no way wanted to offend/belittle/undermine anyone’s Epilepsy experience. There is no easy seizure…and it is a big deal no matter what. I suppose what I was trying to convey was why my daughter is one of the more complex cases that my neurologist is dealing with. In her case, her seizures are so severe and require so much medication that her body begins to shut down. EVERY time. So every seizure is a very real possibility of …ugh…death. Truly. I realize every seizure can be that too…but there is the fear that if we didn’t have access to the additional meds/emergency services…she wouldn’t make it through. And of course, there is always the concern that further damage is done when she has such prolonged episodes. So again, please hear my heart when I say that it was not my intention to imply that Epilepsy is no big deal…just that my daughter unfortunately has an unusally severe form of the disorder. (As explained by her doctor). And yes, medication side effects are also something we have dealt with…she is on her third version of meds due to very difficult/dangerous side effects. The condition is no walk in the park in any form. Hope that helps clarify my words…it can be hard to convey in a short blog post! :)

      -jg

  5. 6

    Wow. Just wow. To live in a place and time like ours where they can get such intimate knowledge of our very brains is amazing. But Teeny Jilly going through that – you and Andy going through that – wow. It is a time for prayer, And a time for praise, oh yes! I’m going to go put Jilly, the doctors and your family on my prayer list right now.

  6. 7

    Thanks for explaining. I knew that you certainly understood the nature of seizures, but I just wanted to clarify for other readers that any/all seizures can be dangerous. Basically if your seizures don’t respond to medication you are in trouble. Please say a prayer for Jack. His surgery is tomorrow and brain surgery is the really the only option they have to stop his seizures since he has been on so many different medications and his seizures continue every day. He is only 20 months old. Thanks again. And as far as the surgery goes, if you are looking at some form of hemispherectomy , the kids I’ve heard about have had good results and recovery. Please keep us updated about your sweet Jilly.

  7. 8

    Your attitude and spirit amazes me. Totally amazes me. You leave us with the most important thought. . . God is good, no matter what. So true.
    Brittnie´s last blog post ..Sleep training Clara, Day 1

  8. 9

    Oh, holy crapoly. This is intense…and beautiful…and amazing…and terrifying. Lifting you guys up in prayer, as well as the doctors. This could be the start of a major life change! Prayers that you’ll get your summers on the boat!
    the Blah Blah Blahger´s last blog post ..A BIG BED FOR ONE

  9. 10

    Holy crapoly. My jaw just dropped. When in your wildest dreams do you expect to hear the words brain surgery?! Friend, rest assured you are in the prayers of many of us.

    Your post also reminds me how deliberate God is. He puts special little kids in homes like yours…Thank you for being so amazing. xoxo
    Tauni´s last blog post ..Show and Tell Linky No. 14

  10. 11

    He is so, so good. Glad you are owning fact that this is scary and He is good in the middle of it. Prayers!
    Jenny from Mommin’ It Up´s last blog post ..Happy 35th Birthday, Jenny!

  11. 12

    Wow. Just…wow! Praying for you and sweet Jill and everything that the future holds…God IS good!

  12. 13

    As a sister with a 21 year old brother who has epilepsy I want to again say how much I admire your families spirit!!

    My brother, John has about 3 seizures every 5-10 days. He’s been on very medication under the sun, and he has had very similar tests that Jill is about to go through. John’s seizure frequency and duration has evolved and continues to as he ages. I pray that your family will continue to participate in the activities you all enjoy, even if they are slightly different then you usually intended.

    Keep up the good work!

  13. 14

    God is good all the time..and that too is about the only thing i know, too. may God magnify His mercy, wisdom, and healing on your little girl in Christ Jesus. Amen.
    denise@victory rd.´s last blog post ..Chalkboards & My "Part"

  14. 15

    We’ve been on the opposite end of the spectrum in regards to seizures…instead of lasting hours on end, they clustered so bad that he could have 10, 2-5 minute tonic clonics in one day, and HUNDREDS of myoclonic, and astatic seizures a day. When the seizures won’t stop and you’ve tried every medication possible…you feel so hopeless. Helpless. Powerless to do anything. We have finally found reprieve…with high doses of 4 different medications and the ever complicated ketogenic diet (which comes with its own set of adversity). but like you, no matter how difficult the treatment plan – tell me where to sign. Nothing is as hard as watching your child seize…especially once their oxygen drops and the room gets scary…

    They will find your miracle as well. I just know it.

    It is ever so frustrating though how much people don’t understand about epilepsy. Most just think that you have a seizure, go to sleep, and eventually grow out of it. Most don’t know that it’s like watching your child disappear in front of you…each seizure takes a little bit of your child with it…and also leaves you all the more unnerved and cautious.

    But God is good. all the time. no matter what.

    no. matter. what.

    Thanks for sharing your heart and listening to us – strangers – comment on your situation. I love your blog. I love your family. I pray that Jilly will find her miracle soon. I pray that we can raise awareness to cure epilepsy.

  15. 16

    Thank you for sharing friend! We are going through some health issues too and it’s always so great to hear your positive outlook on things. Love you!

    Darci

  16. 17

    My heart aches for you and your sweet girl. I had a coworker who would seizure several times a week in the workplace. We both started earlier than anyone else; whenever I saw the paramedics, I knew. We all knew what to do to make sure Casey stayed safe. He couldn’t drive, but he had as normal a life as anyone could have while dealing with a seizure disorder (sharp as a tack, total business/money whiz, just couldn’t drive).

    I hope that your questions are answered and that the docs are able to work wonders for your sweet girl. Know that your extended ‘Internet family readership’ says many prayers for you and your family.

    Best,
    Caryl

  17. 18

    Whoa. I’m praying for you friend. This post of so full of God’s grace in the midst of terrifying circumstances.

  18. 19

    …and the only thing we need to know! (Though sometimes I think, wouldn’t it be so nice to KNOW. Then again, maybe the thing we do know is all we really need.)

  19. 20

    So glad you’ll find some answers. And I second those feelings about UCLA for myself and others. In fact I’m wondering if you may have come across the same doctor that a friend has seen who speaks the same way about him. Blessings and prayers for you all.
    Jackie´s last blog post ..ten on ten : september