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.  

Again...pray, pray, pray!

Awaiting results of testing and doctors' diagnoses is never easy.  Fear and anxiety creep in quickly.  We have an appointment to meet Elsie's team of epilepsy specialists on Tuesday morning. They will explain the results of all the testing she went through the past few weeks and give us their recommendation for treatment to control and minimize her seizures.  What I've been told is that could mean a change in medication, or a new kind of strict diet, or brain surgery.  (Gulp.) You can see which one my heart is anxious about.

At church this morning I was reminded that as I follow Jesus, I have to be fully surrendered.  His will and His way is good.  Even if the doctor recommends surgery, God will provide for and sustain our family through it, just as He has done in our past trials.  Please join us in praying...even though we're willing to walk through whatever comes, we'd much rather face the simpler solutions than the major trials. 

Wordless Wednesday

My first Mother's Day

I’ve been mothering for two years now and today was my first Mother’s Day.  Bella joined our family early June and she left us the day before Mother’s Day last year.  We picked up Emma two weeks later.  So today was my first Mother's Day with my little ones in my arms.

I attempted to savor the moments today, to cherish, as Mark calls it.  So, when I stopped and thought of my journey to motherhood, and how long I’ve waited to celebrate Mother’s Day, and how full of joy my little girls make me, I was filled to the brim with emotion and tears quickly surfaced. 

Today was a beautiful day, spent in a beautiful place, with two beautiful little ladies, and a handsome stud of a photographer!

On cherishing...

(By Mark)

As we come upon the year anniversary of saying goodbye to Bella and hello to Emma, I wanted to reflect on a few things I’ve noticed about myself in the grieving and bonding process with these two precious ladies. 

When we found out we would not be adopting Bella, there was obvious shock and grief.  There was a period of hope, there was always hope.  But there was also a time to recognize the inevitable, the loss of a child still with us.  Again, we didn’t know when she might be leaving us, but we knew it would come.  I found that something within me naturally changed in those circumstances.  I learned to cherish. 

I found that TV and video games weren’t as important as the fleeting moments I still had with Bella.  Her requests to be held were easier to comply with.  I found that the things that once seemed so important to accomplish “right now” were things that could be done later.  I also began to find myself fully present in each moment.  No longer was I thinking of the next thing on my list as I fed Bella her evening bottle.  And each and every sweet moment were times I just wanted to linger in.  Rocking her to sleep no longer was a chore to endure but a one more time to be with her, to watch her slowly fade to sleep, to kiss her head and lay her down.  There were tears, lots of tears, but there were memories burned into my heart forever.  Because I knew it wouldn’t last.  Each time I put her to bed was one less time, moving me towards the last time.  Boy did I learn to cherish her in those moments. 

And now, I am still learning to cherish.  What Bella taught me was that life is but a breath.  Those we love can be taken from us in a moment.  That knowledge can be dangerous, unhealthy.  It can lead some to protect themselves by never truly loving another.  To never really give themselves in love.  I choose to allow it to affect me in a different way.  To help push me to make the most of the moments I have.  And I’ve found this helps me to be a better father.  I yell a little less, and not as loudly these days.  Things the girls do are not as big a deal.  And I’m free to delight in them, even when they’re pouting, pitching a fit or hard to be with.  I can delight in my girls, I can cherish them because I know they won’t be this young forever, and they won’t be with me forever. 

Bella taught me to cherish her through her leaving.  The anguish of losing her made her all the more dear to me.  I doubt I would have appreciated her, appreciated my girls now, had I not engaged with the loss to come.  So this I commend to you dear friends.  Be in the moment with the ones you love.  Put the smart phones down, close the computers and go play with your kids.  Call your grandfather.  We are all hurling towards the loss of this life.  Make the most of it by not having regrets.  Cherish the now.  

Day 8 and we're done!

Squealing.  

She was squealing and running through the lobby of the hospital when I finally set her down.  Freedom.  She hadn't really had it in eight days.  For way too long, play looked like this:

She definitely had tears and screaming when they took the electrodes off, but it was nothing like last Monday.  And Liz, a music therapist with a beautiful voice, was there to try to calm and distract Elsie through it. 

So now we're done.  Thank you, Jesus, she's home.  She's asleep in her bed without being hooked up to a machine.  She never had a seizure in the hospital.  The doctor said about 50% of kids do and 50% don't.  We hope and pray that all the other tests will be helpful enough.  Thank you for your prayers for our family throughout this past week.  Once again, we're feeling the love and we're grateful. 

Days 5 and 6

More playing.  Still no seizures.  

She finally got her IV removed.  

The doctor says the lastest Elsie will be released is Monday.  And we're thankful...we're so ready to be a family of four under one roof again.  

Daddy is taking his turn with Elsie in the hospital and I got to have a day at home with this cutie.

Day 4

Still no seizure.  We played all day.  And Elsie had a couple visitors.  

Grandma and Emma were here.

And a big doggy named Morgan came by.  

Bubbles are a fun distraction! 

Playing all day isn't so bad.  I'm enjoying the bonding time with her.  But we'd still rather be at home!  Keep praying for a seizure!