My part-time job

Elsie's medical appointments and all the paperwork that goes along with them in moving to a new city is taking lots of time and attention.  Last week alone she had three appointments.  We've seen the new pediatrician.  We had her evaluated for outpatient speech therapy and physical therapy.  Unfortunately there's a waiting list for occupational therapy.  Now they want her to see and orthopedic specialist and a developmental delays specialist.  In feeling a bit swamped in all of this I said, "Mark how many specialists does Elsie need to see?!" His response was a great reminder, "As many as it takes." 

In the meantime we are still seeking opinions about her surgery.  We drove two hours to see one specialist at a highly respected hospital.  He spent an hour with us, covering very basic info and looking over the discs containing the various tests that she had done in Florida.  His opinion was quite contrary to "she's ready for surgery now."  He basically said we can wait.  Wait for this medication to fail.  (It still hasn't, by the way.  Elsie hasn't had a seizure since we left the hospital in FL.) Wait to see if another medication might work.  Wait until next year and then maybe talk about surgery.  

This report was rather frustrating to us.  It doesn't confirm that surgery is the way forward.  But it didn't seem like he took all that much time to come to this conclusion.  A whole team of doctors who have seen Elsie all year are saying surgery can help.  Nevertheless we're still seeking more opinions.  One from another highly respected medical institution north of us an hour, and one in town.  Pray these appointments are set up quickly and that the way forward is clear.  Thank you!

We're here...and an Elsie update

What a crazy two weeks this has been.  The dust is finally settling in our apartment in Ohio.  We’ve had several long and tiring days of unpacking, cleaning and lots of shopping to create a functional home here.  We’re getting there.  Some clothes are out of suitcases, but Emma is still sleeping on a blow-up mattress. 

Our two days of driving to get to Ohio were not so fun.  The second day, July 2^nd, was 12+ hours and I decided I’d rather sit between the two car seats than be turned around the whole time, so Mark drove it all.  What a champ!  July 1^st we left my parents house and stopped in Orlando for a rather long and important doctor’s appointment.  Elsie’s specialist gave us the summary report of all they’ve found with all the testing they’ve done, and his recommendation.  They know there is abnormal tissue on the left side of her brain.  It is causing the seizures and influencing her development.  He said that without surgery it is unlikely she will be a fully functioning adult.  The good news is that the new medication Elsie began when we left the hospital is working right now.  (Thank God she hasn’t had one seizure since we left the hospital.)  However because the other three medicines have failed, there is a less than 1% chance that this medicine will be a long-term solution.  So, surgery is necessary. 

That day we also got more details about what surgery will look like.  It’s actually two surgeries.  Right now they have a clearer picture of where the abnormal tissue is.  However because they don’t want to take out too much tissue and they don’t want to take out too little, they have to be precise.  So the first surgery is to place electrodes directly on her brain.  Then they close her skull, with wires coming out, and wait for a seizure.  If one seizure confirms what they already know and gives them the information they need, they do the next surgery to remove the tissue.  If it’s conflicting or inconclusive, they wait for another seizure.  After the second surgery she will be on the road to recovery, but wow, what it will take to get there. 

In between this news and the madness of settling into our apartment we stopped for a few days at Nana and Papa’s in central Ohio.  Large shade trees, little humidity and beautiful days meant lots of backyard playtime.  Transition is hard on all of us, but our days there were fun and relaxing.  

Thanks for keeping our family in your prayers! 

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.