Florida Recap

Last August we moved to the sunny south.  Tonight is our last night to live here.  And we’ve had LOTS of fun living here.  I realized that in the midst of all the medical updates I haven’t done a great job posting the little pleasures of life.  So here are some of the pleasures of living down here.

Disney!  We were blessed with free season passes for our family and we tried to take advantage of them.  Our goal was to make it about once a month and maybe we did that…some months we didn’t go and at the end we went a lot.

our first day in the park

our last day in the park

The Beach!  We really enjoyed some sunny days on the beach.  Emma loves playing in the sand and Elsie loves running in and out of the surf.

Grandma and Grandpa!  Having Erika’s parents only a short drive away has been a blessing beyond words.  We’ve enjoyed many weekends (and here at the end, a few weeks) of pool time, yummy food, and lots of hugs and kisses and playing.

We're a little sad to leave.  We've had a great time and have really enjoyed the friends we've made and the memories we've shared.  We are NOT looking forward to two full days of driving.  Please pray for Elsie to be somewhat calm and at least sleep a little and for our safety driving.  Emma will do great.  She loves to sleep in the car, and we have a DVD player she doesn't know about yet.  :)  We also stop tomorrow morning to meet Elsie's doctor down here one more time for their thoughts after the last hospital stay.  Wednesday evening we'll be back in Buckeye country!  

Answered prayer

Today Elsie had another seizure in the hospital.  I guess I failed to mention that she had one yesterday too.  But it wasn't during the scheduled time for the scan and I moved her out of the camera's view during it.  So it wasn't ideal and they really wanted to see another one.  I was honestly so doubtful.  We've never seen seizures two days in a row like this.  But God does hear and does answer prayer and this time, He did very specifically.  

On her way to the scan Elsie met some special visitors.  

After the scan, she slept for three hours and then she was able to eat and get the electrodes off.

I just had to snap this picture! Have you ever seen crazier hair!?!  

The doctors say that this time they got very good information.  The two seizures, and especially today's scan, are able to show them a lot about where her seizures are originating from.  This will tell them if she's a good candidate for surgery.  And we also start her new medication today.  

So again, thanks for praying with us and following our journey!  Our family now has three weeks with grandparents before we move into our apartment up north.  Grandma and Grandpa, here we come!  (The rest of us, Emma's been there since Tuesday.)  Nana and Papa, your turn is coming!  

On prayer

We ask you to pray for us a lot.  We give you specific requests and ask that you’d join us in prayer.  Many of you are Christians believing there is a powerful God who hears and answers.  Some of you are not.  Likely all of us at times have doubts.  Does God really hear and does He really answer? 

I read this tonight in Paul Tripp’s book a Shelter in the time of Storm. “Prayer finds its hope not in the qualifications of the one praying, but in the character and plan of the God who is hearing.  He answers because of who he is.  He answers because of what he is doing. He answers because he loves to see us come, and he loves to provide just the grace for that moment.” 

God is loving and gracious and faithful. He is about his kingdom and his glory. Our little story is a part of his larger story.  And so I ask you to join us in coming before God, recognizing our neediness before him, and I hope that doing so it points us all to him.  I hope that by understanding our little story, we all somehow understand his greater story.

How exactly does our year with Bella, Emma’s surgery or Elsie’s seizures fit into his greater story?  I don’t know.  But they cause me to be needy.  I need Jesus and I need you.  So, once again, thank you.  Thank you for entering our story and praying on our behalf.

Today you can continue to pray that Elsie has another seizure, preferably tomorrow between 7 am and 1 pm. Thank you.

No seizure yet, but...

...I can count on one hand the number of times that Elsie has fallen asleep in my arms.  Today was one of them. We had a wonderful nap together for about an hour.  For that, Lord, I am grateful.  

If she has a seizure any day, it's helpful.  But Thursday is the next special scan.  If she has one that day, her doctors will be particularly pleased. 

We're back

Today was so much better than the first time around.  It was still awful to get those electrodes on her head.  She cried and screamed, but only for 40 minutes instead of two hours.  And she'd just had two hours of play time here while we waited for them to start.  Afterwards she was mad and tired, but she didn't nap.  So by the time dinner was ending, she was losing it.  Now she sleeps until 4 am when they wake her to put in her IV.  

It would be best if she'd have a seizure tomorrow between 7 am and 2 pm.  Please pray!  We know it can happen, we just don't know if it will.  I'll keep you posted. 

My poor little one

Let's think about this from her perspective for a minute...

"Why are my parents so busy?"

"Why does our stuff keep disappearing?"

"I like order and structure.  Why don't I feel like I have any right now?"

I know Elsie does not have any of these conscious thoughts.  She just doesn't understand.  We're in transition.  We're packing.  She just ended school.  And there's no way I can explain any of this to her.  

It's really hard on her.  And her seizures continue, and have become more frequent.  May 23rd, May 30th, June 1st and today, two.  Yuck!

Monday she's admitted to the hospital again.  Another round of monitoring her seizures.  (See my posts at the end of April to remember how round one went. It wasn't pretty.) Please begin praying now that she has a seizure on Tuesday or Wednesday.  They can do an extra scan and understand a lot more if she has one those days...and then they'd probably release us much sooner.  

Wish we had better news...

Brain surgery.  To a neurosurgeon, I suppose those two words aren’t a big deal, but to a parent, they are.  It’s not 100% conclusive that Elsie needs surgery, but it’s highly likely.  We will first try a new medication.  The doctor seems pretty convinced that it won’t control her seizures.  We will also have to have another hospital stay to monitor her, and they must catch a seizure this time.  After this, surgery can be scheduled.  However, in the next couple months, we are also moving from Orlando to Ohio, so we will also see a doctor up there to get a second opinion.

 

The problem is that all tests and scans show that Elsie’s brain has abnormalities in the left temporal lobe.  At 8-12 weeks gestation something didn’t form properly.  (A few somethings actually as 9 weeks is when clefts occur, which Elsie also has.)  Today we saw pictures of the matter of Elsie’s brain and also images of the function of her brain and the right and left sides were not mirror images.  With surgery they actually go in and remove the abnormal tissues.  This causes the rest of the brain to compensate for the missing parts and form new pathways. After surgery he said, “it is likely she will lead a normal life.” 

 

This is still all soaking into our minds and hearts. We’re not sure how all of this continuing medical care will happen in the midst of our move.  And then there’s the financial aspects of all of this on top of all that’s already occurred.  I know the word is overused, but what else do you call it?  We’re overwhelmed. 

 

Thanks for your continued prayers.