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!

Facebooktwittermail

A Little More

So, our WAW is turning in to a bit more proactive.  Our pediatrician called last Monday and let us know the results of the MRI.  I should say our pediatrician called at 6:30 Monday night.  As soon as she received the MRI results.  We had looked at the scans beforehand and I had sent an email to Dr. B to let her know we were very interested in receiving the results as soon as possible.  She willingly obliged.  She not only went over the report but also calmed some fears and discuss some things to watch for.  We are blessed.  Beyond blessed to have a pediatrician who knows her stuff and knows NF!

Dr. W called later in the week  after we pestered him and he pretty much confirmed what Dr. B said.  He also confirmed that we are moving from an “if” she has surgery to a “when” she has surgery.  He was waiting to get information from Dr. C, her neurosurgeon before contacting us.  And, in true amazing Emmie fashion, she “won” a spot in joint conference, where all the neuro people discuss the more diffficult cases.  Go Emmie.

Here’s the results:

While the plexiform neurofibroma (benign tumor) that is on her neck is growing and pushing on things it is not causing any problems as of right now.  That is good news but is going to require closer monitoring.  We have been armed with what to look for if it starts causing issues and ya’ll know my mama hawk eyes are on it.

The main area of concern right now is the cervical kyphosis.  Kyphosis is an abnormal bend in the spinal cord (ya’ll know this is the non-medical me talking here right?).  In Emmie’s case, the spine is curving in the neck area.  It was noted on her MRI in September and we were told then that it was a WAW situation.  It could have been because of the way they positioned her in the MRI.  This time, however, it was a lot worse and very clear that it is not a positioning issue.  Her spine is now curving into a “C” shape with the opening being at the front of the neck.  Googling a normal spine MRI and you will see that is no where near what it actually is supposed to look like.  They don’t believe that this is directly related to the plexiform neurofibroma but it could be an indirect issue or just another one of those lovely NF symptoms.

Here’s a great article on orthopedic issues in NF1 patients.  Kyphosis is mentioned and treatment therapies are mentioned.  My social work nerdy self found it all very informative.

Surgery to correct the kyphosis will be in Emmie’s future, unless the Lord decides to heal her of it completely first.  However, the doctors want her to be as strong and as old as possible to ensure the greatest amount of success.  While, we all know that bracing will not cure the issue or completely correct it, they want to try it first to try and delay surgery.  So, at some point, Emmie will be sporting the latest in headgear fashion of some sort.  We don’t know how long in a day she’ll have to wear it or how long in months she’ll wear it.  Not sure what it will affect in her development or in her current muscle strength.  A lot of questions that will be answered at upcoming appointments.

We had hoped that we could go at least six month between MRIs but the plexiform growing and the kyphosis earned  her a three month vacation before the next one.  This will be MRI #4 in under a year.  I hate this part.

But this goofy girl just has my heart!

Facebooktwittermail

Emmie’s 9 Months!

I know I’m not quite done with January updates but ya’ll, this girl’s pictures just had to be shared.

 This face.  Oh my she looks like a little old ma but it’s her normal focused face.

 Playing peek-a-boo.
 Photo bombed by a sweet protective sister.

See?  She’s just adorable!

She had her nine month check up this month (March).

Here’s her stats:

18 lbs 8.4 oz.
28 1/2 inches long

She’s our petite little thing and we’re watching her weight closely but she is right on track with her development and we couldn’t be any more pleased!

She loves to eat whatever we have and expects all food to be shared.  She hasn’t learned that mama doesn’t share chocolate with anyone.

She’s not really interested in crawling but let her use you to stand up and she’s off cruising around whatever she can reach.

Facebooktwittermail

January Randomness

In January, we were blessed to be able to get a digital slr camera used from our neighborhood trade page.  Which means Mark has a new camera.  He’s enjoying it too.  See???

 And this is my pictures from “ye ol’ phone.”

Ceili Rain entered a coloring contest at our dentist’s office and won!  She was supposed to get a year’s supply of dental supplies.  Yeah, they don’t do anything halfway there!

 Zoe curled Ceili Rain’s hair one night and Ceili Rain was thrilled.  Well, after the initial shock of giant curls.

Emmie loves to play peek-a-boo.
This is what happens when we play with “Elf Yourself.”

How Emmie spent most of he nights in February.  If you look closely, you’ll see Mama spent most of it awake.

Facebooktwittermail

Zoo Kids

A beautiful day in January meant we needed to get out and visit the animals!  And, as luck would have it (okay we knew this), Mark was able to go with us.
 What happens when we give the kids a camera.

 Emmie’s first carousal
 ride.
 No they weren’t climbing sideways…mommy forgot to flip the pic.

 

Facebooktwittermail

Emmie’s Update

In February, we had planned to have Emmie’s MRI and her neurology appointment.  Unfortunately, the night before her MRI, she was coughing and sputtering and having massive amounts of yuckiness coming from her nose.  She had a cold.  We all did, actually.  Not fun.

So, since she has to be sedated, we contacted radiology and they gave a pretty big ol’ fat no to the MRI that day.  We wholeheartedly agreed.
But before the MRI, Emmie got to hang out with Dr. W, her neurologist.  

That was his goofy grin…And check it out.   I am not touching Emmie and she’s not screaming!  Woohoo.  Obviously, she thinks he’s pretty awesome and we agree with her.
Dr. W said she looked great and is rocking standing up and doing all the things a nine month old should do.  He told us that based on her next MRI, we’ll determine her next follow up appointment.
Fast forward to March and we were able to reschedule her MRI for the 7th, this past Saturday.
Waiting for the super not fun iv stick

Our little hero was a trooper.  Her MRI was scheduled for 6 am.  We left Ge & Granddaddy’s by 5 to get there in time.  Tiredness does not even begin to describe how she was. 

She was aware this time.  Very aware.  And she mostly wanted Mama to hold her.  That means that I got to hold her through the IV stick.  Nothing can prepare you for your baby screaming and crying and trying to bury her head in to your chest because she knows Mama is safe and Mama is the one holding her letting these people stick sharp objects in to her.  I had to fight that Mama Bear instinct to scoop her up and run out the door (truth be told, I have fought it through each MRI).  However, since I’m the Mama, that means I got to take her as soon as she came back to the room too.

 She did excellent with anesthesia this time.  Her nurse said she was already waking up when they finished so she just carried her back to us.  She slept peacefully for about fifteen minutes and then gradually woke up.

After some mama’s milk, she had some daddy silly time while we waited for the discharge.

And the nurse surprised her with a fun balloon and super soft stuffed teddy which entertained her on the way home.
I wish I could say we had boring results from the MRI, but right now, it doesn’t appear that way.  We’ll know more when we talk to Dr. W and I’ll share more then.  The news is not entirely devastating.  Just hard to swallow.  Like one of those giant horse size prenatal vitamins.  Then again, it could be the ol’ WAW as my good friend Kristina calls it now.  Watch And Wait.  Our least favorite three words in the human language now.
For now, we appreciate prayers for Super Em or Miss Ems as we call her.  She’s our hero.  And she’s got lots of gumption to go along with that title!
Facebooktwittermail

Until We Meet Again

Our last Sunday, Y got a picture with Pastor B.  

We had to get up bright and early the day Y had to fly out.  Some people were quite cranky about it….

Others were really (okay, really really really) sad.
And others were just plain goofy

I don’t think our Y realized what was truly going on until he had to go stand with the group and away from us.  His usual smile turned to a bit of concern when he saw me AND Pa crying and he realized he couldn’t give us hugs.  But soon….oh so very soon I’ll have him in my arms again!  We can’t wait!!

Facebooktwittermail

A Tale of Mistaken Identity

Once upon a time there were two beautiful little boys with the same name who dwelt under the same roof in a land far, far away.  One little boy was placed under the care of his aunt and the other had no one to care for him.

Until one day when the little boy left his far away home on an adventure half way around the world.  His feet landed on foreign soil and in to the arms of a mother and father who grew to love him dearly.

Alas, that little boy had to leave his new family to return to his faraway home but oh how the mother and father and his new brothers and sisters prayed that one day they would be reunited.

One day, sad news traveled from afar to the mother and father that the little boy was under the care of a kind and loving aunt.  While the parents were devastated they would never see their son again, they knew that he was in God’s hands and only God would direct his steps and guide his precious life.

Then news traveled again from afar…the little boys with the same names had been confused.  Yes, indeed, the little traveler was not under the care of a loving aunt.  It was the other beautiful boy with the same name.

The family from half way around the world rejoiced at God’s timing and His love and began, anew, the quest to bring their son home forever.

But first!  The young boy will leave his far away home on another adventure half way around the world for two whole months with his loving, and often times crazy, family!

The Beginning…(Because there is no way this tale is going to end here…we need a happily ever after people!)

Okay, okay, now it’s the non story teller me!  Yes.  You read that correctly, Y the Brave is indeed available for adoption and we are, once again, on this crazy adoption adventure.

Stay tuned.  Keep your eyes peeled.  We will be raising money to get the first part of our adoption paid for…and then the second…and the third.  We thought breaking it up in to three goals might not make all of our hearts drop to our stomachs!

We’ve got three fundraisers in the works for now and we’ll have more to come.  While Y is here over the summer, we won’t be discussing his adoption to protect his heart, so we’ll be doing fundraising via the internet.  Mark should have the donate button up soon through Paypal.

Facebooktwittermail

Last Hoo-rah!

The day before Y the Brave left, we had a  plan.  It started with a silly string ambush when Mark got home from work.  Don’t worry, I made sure he was properly armed before he was attacked.

Then before bed, we blew up these cool led balloons.  And had a small glow party.

These balloons are awesome and were a ton of fun.  Several of them are still glowing in fact.  We wanted to make sure we had some fun memories with Y and these small things made it a ton of fun.

Facebooktwittermail