We're back

In the land of sunshine and palm trees.  The girls are swimming in grandma and grandpa's pool.  All is right for now.  But Elsie has no idea what is coming. 

Our travel down here was just fine.  It was tiring and stressful at times, but overall they did great.  Our connection to the second flight couldn't have been smoother.  We got off one flight and walked two gates to the next one.  

Our appointment this morning went well. We've been seeing the epilepsy doctor all year, but today we met the brain surgeon.  He was kind and personable and explained everything in a very matter of fact kind of way.  "We will cut a C-shaped incision and open her up and put the electrodes in.  Then we wait for one or more seizures to be sure we know where the abnormal tissue is.  Then we take that part out."  There was a little more to it than that, but that's the main idea.  

Q: How long we do we wait for a seizure?  They aren't daily.  A: As long as it takes.  She will have one.  The longest they've waited is about a month.  Q:  What if she just doesn't have one?  A: One time in the three years he's been at this practice has that happened.  The child's EEG was miraculously normal.  And so they went back in and removed the electrodes.  Q: What if she yanks on these wires coming out?  She's really active.  A:  Lots of kids are. They suture the wires to her skin.  If she pulls, it'll hurt.  

So that's what we know.  Now we enjoy the week until the fun has to end.  Monday we go back for pre-op blood work.  Surgery is Wednesday morning.  

Another hard road

Hello dear friends,

As we enter into the next two months of the unknown, we know that we will not be able to navigate all that is coming our way without HIS strength and YOUR prayers.  Would you commit to praying for us all as we keep you updated on Elsie’s medical treatments in Florida?  I (Mark) will remain in Ohio to work on our ministry support.  Here are a few suggestions for the next few days.

Monday 22 - Travel Day –

Pray that Erika will be able to navigate the airports, security and flights with both girls smoothly.  Pray the girls would be easy-going and flexible.  Pray there would be strangers willing to help.

Tuesday 23 - Dr. Consult –

This is the initial consult with the surgeon where we can ask questions and get a better understanding of the procedure.  Pray for clarity of communication. 

Wednesday 24+ - Rest –

Erika and the girls will head to her parent’s place for some RnR before surgery on the 1^st.   This will include lots of swimming and love from Grandma and Grandpa.

Mark will begin a packed week of appointments with some of you!

We are thankful you walk beside us as we continue our journey.

In the midst of "to do"...

...I have to remember to stop and "be".

Today I was able to do just that with this little lady:

This past week God has given me a special gift that feels very personal: perfect fall temperatures and changing leaves.  I love the fall.  Some may think I'm crazy, but I'm pretty sad to leave this weather and head back to FL. 

This morning, while Elsie was at school, Emma and I played outside for a while.  I enjoyed the weather, but more than that I enjoyed her.  We aren't going to be spending much time together in the coming weeks as I stay with Elsie in the hospital.  So in the midst of a rather long "to do" list, I'm so thankful I chose to get out and be with my daughter. 

Decisions, decisions

In the July 13^th post we told you that Elsie’s doctor recommended surgery and explained a little about what that would look like.  Well, we’ve been seeing doctors up here trying to get that recommendation confirmed.  It hasn’t been quite that easy.  A doctor in Cleveland told us that he would wait.  He would try more medicines and then see if surgery might be necessary.  We tried to see a doctor in Michigan and couldn’t get in until early next year.  Not helpful.  And today, we finally saw another doctor here in Toledo. 

We had been moving forward with plans to do the surgery in Orlando on October 1^st.  But we haven’t felt confirmed in that decision until today.  This neurologist spent about two hours with us.  After seeking to understand Elsie’s case, he explained the issues surrounding her epilepsy and the differing ideologies the other doctors are coming from.  It was extremely helpful.  He basically explained that on one hand are doctors who are seeking to control and manage the seizures, and doing surgery when it’s really clear and absolutely necessary.  These doctors focus on the epilepsy.  On the other hand are doctors who, yes want to control seizures, but also highly value development.  They see cases where significant developmental strides occur after surgery and therefore are more aggressive in recommending surgery. 

Because Elsie has been seizure free since June 13^th and the current medication is working, both of these ideologies fit her case.  It’s not clear that surgery right now is absolutely necessary.  But it’s also highly probable that it will eventually become necessary.  Because of the brain’s plasticity, surgery on the brain is better at younger ages.  And we want Elsie to have the best chance she can to grow and develop.  Therefore we feel comfortable being more aggressive in moving forward with surgery now.

So the girls and I fly to Orlando on September 22, we meet with the surgeon the next day and then surgery is scheduled for October 1st.  Almost exactly a year after Emma had her surgery in the same hospital.  Here we go again...

What a difference ONE YEAR makes

It's been exactly one year that we've been a family of four.  Wow, I can't believe a whole year has gone by already.  Yesterday we celebrated by looking at pictures of videos of the girls when we picked them up.  There was a lot of "awww", "how cute", and "look at this" and of course, Emma had a ton of questions.  

Clothes that were baggy on them in those pictures now can barely be snapped shut.  Hearing Emma speak Chinese again delighted my soul.  Her language progression is nothing short of miraculous.  Elsie was such a tiny, skinny little thing.  When we picked her up, she drank formula from a bottle five times a day and ate a few crunchy things.  Now she eats whatever we give her, and hasn't had a bottle in three months.  

Here is a video from the day we picked up Elsie.  Emma brought a teddy bear to give her and I captured the interaction. 

They are sisters and we are a family.  One happy little family.

I stole this idea from my friend Ashley...Next year we'll print this picture and take a picture holding it and so on each year.
 The result is really cool!

Chicago

We just got back from a wonderful trip to the Windy City and the western suburbs. It was a great week connecting with old friends and meeting some new ones.

We enjoyed front porch swings 

Back yards with lightening bugs

Visits with dear friends

a trip to Great-Grandma's house

high school friends' kiddos...and three are missing from this photo

high school buddies...but one was missing

A day trip to see Uncle Brennan and Jenni

We rode a train, a ferris wheel and a boat on this day!

A lot of traveling meant a lot of this:

Elsie likes it dark when she sleeps

Emma is asleep within five minutes of getting in the car

I'm not sure which was more fun at Uncle Ray and Aunt Donna's house...
this giant teddy bear or the fish you could feed in the backyard.

Thank you to all who made this such a fun trip for our family!  

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!