And Action...with a Little More Waiting

When we had Emmie's welcome party, we handed out little cards and told visitors that, as they felt led, they could write a verse or prayer for Emmie and our family.  No one knew what we pretty much suspected.  No one knew that those cards would be read over and over again and fill my heart with God's peace over and over again.  When Emmie went through the initial diagnosis and first MRI, we received several emails and texts and messages with verses and prayers.  I wrote those out on the cards and added them to the ones we had received at her party.  This is where they are now:

She's now sleeping in the girls' room so these will be moved eventually but for now they hang over her crib underneath is a beautiful picture my grandmother had started sketching but had never finished.  As an aside, I remember her telling me that she didn't like the way it was turning out so she stopped it.  To me, though, it's beautiful.   So, when I rock and nurse Emmie and am praying over her I can look up and see God's promises and friends' prayers for our beautiful girl.

Now for the update.  On Friday, we traveled early in the morning to Atlanta where we met Grandmere and Papa who sweetly volunteered to take the crew back to their house.  After bugging the neurosurgeon's office we had a better feel for what the day held and knew it was going to be a day full of appointments and fittings.  Not something we wanted to make all eight kids go through.  Have I ever mentioned how amazing our family is?  We had scheduled Emmie's appointment with the neurosurgeon for Friday on Tuesday.  Three days notice and our family made it happen.

After dropping the kids off, we made our way to Emmie's appointment with the neurosurgeon.  Dr. C was great at explaining and showing us Emmie's kyphosis.  We found out that there are probably two things that are causing the abnormal bend in her spine.  First, the weight of her head pushing down on the spine.  Secondly, a plexiform neurofibroma (tumor) pushing in to the spine causing the curve.  From what we understood, the plexiform was not noticeable in September but was definitely visible now.  Honestly, we had no clue about the plexiform being there.  My heart just dropped when he told us.  Just not what I was expecting.
This is as if looking at her profile.  The curve towards the top of the spine is the kyphosis with the tumor being in that curve closest to her chin.

Here's the plan:
1.  Dr. C is looking for an ENT who has experience with a similar situation.  He wants to find out if it would improve the kyphosis to debulk the plexiform now.  Please pray that Dr. C will find the right ENT. Words used were "complex procedure" and " difficult to find someone who has dealt with this."  Two things that took our breath away.
2.  Emmie will wear a cervical collar.  The collar will hopefully take the pressure off her spine from her head weight and keep the kyphosis from getting worse.
3.  The goal is to delay surgery to correct the kyphosis as long as possible.  The surgery will involve rods and pins in the bone (I can separate myself now from the medical and the emotional when I'm typing but please know that I am not typing this halfheartedly...I know it's a lot to take in when we are talking about a baby).  Obviously, babies have very soft bones so the longer we wait the better chance she has at it being a successful surgery.  As long as she is not experiencing any neurological symptoms or problems, surgery is not necessary.
4.  To monitor the kyphosis and get a more accurate measurement, she'll have an x-ray every three months starting this Friday.  We have learned that x-rays show bones better than MRIs just like MRIs show soft tissue and tumors better than x-rays.   Getting x-rays and being exposed to radiation when we know that some people believe that the radiation exposure causes the tumors to grow is not ideal nor what we would choose.  But we know it's what is needed for now.

After all of that news, we headed across the street to the hospital to get the x-ray and then to orthotics for the brace fitting.  First, we had to refuel and get Emmie a quick nap.

The x-ray went quickly.  Just two quick pictures and done.

Orthotics didn't take long either.

But I do have to say that putting that brace on my daughter while she cried was the hardest thing I've ever had to do as a mom.  Ever.  And I get to be the lucky one to do it.  She'll wear it while she is awake and she doesn't wake up in the morning until Mark is off to work.  Thankfully, I'm stubborn and while my heart breaks to hear her cry when I put it on, I know that this is what she needs now.

The difference in her head posture with the brace on was instantly visible to us.  And, again, made me catch my breath.  We just didn't realize how much her head bent down.  She's our warrior.  Our true hero.  After a day and a half of wearing the brace, she has already figured out how to turn her body to turn her head. She's still cruising and playing and laughing and squealing like before.

Not only is she acting like our Super Emmie, she's also getting more steady on her feet.  Friday night, she let go of my hand and briefly stood on her own before taking two very tiny steps to me.  She's trying to pull up on more things too.

I know there are people far and wide praying for our super hero.  We are so grateful for that.  Here are a few things that are on our heart to specifically pray for.
1.  As mentioned already, that Dr. C will find an ENT to consult.
2.  Wisdom for the doctors as they decide the next step.
3.  Wisdom for us as we seek to make sure she is not having any issues from the neurofibromas or the kyphosis.
4.  Strength for our kids.  My heart broke as we arrived back at Papa and Grandmere's house and Malachi watched me put Emmie's brace on (she had taken the velcro off in the car right before we got to their house...stinker).  He was so worried and upset.  He recovered quickly once he realized she was okay and not hurting but still...I'll never forget the look on his face.  Then Saturday, Malachi asked Mark, "What dat thing on her neck for?"  Mark explained it again and he said, "Oh.  I need a hug."  And gave Mark a big ol' bear hug.  It's no secret that Emmie has seven guardians who will do anything and everything for her.  They love her passionately and will protect her fiercely.  This is a new thing and a visible thing that will remind us daily that we are running an NF marathon with her.
5.  Also, yes, we are used to comments and stares but her brace are going to cause more and more of them.  Please pray for courage and wisdom for our children as they share our journey, bring awareness, and hopefully, shine Christ's light with curious strangers.  We've already told them that if they feel the questions are too hard or too much to just bring the questioner to us and we will help.

If you feel the Lord leading you to share prayers or Scripture for Emmie, just email or text me and I will definitely add it to her collection.  One day, I pray she will find comfort in the words as we have.

Now, presenting the latest in spring babywear (and on a beautiful model, I might add):

Ceili Rain said that the brace makes Emmie even cuter.  I decided that was because it made her full cheeks fatter.  Instant fat cheek lifter.  That means that her adorableness is even harder to resist.  Adorableness is her new super power.  Go ahead, I dare you not to smile.  The tears in the eye were from a long tiring day.  The whole walk back to the car she was talking and laughing and squealing.  So, she was fine....just completely exhausted.

Look Ma!  One handed!

Selfies with Mama?  Of course!

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