Two Years

Two years ago today, we walked into a hospital kissing and hugging our little 15 month old daughter closely.  It would be 8 more long months before we could feel her cheek against our lips or her head resting on our shoulders.  After this day, two years ago, six of the longest and hardest days of our lives followed followed.  We watched our daughter, lay in a bed weighed down trying to stretch her neck out to gain her just a little more time before spinal fusion surgery.  Mark and I were on the road twice a day swapping up our time between her and the rest of the kiddos and seeing each other only briefly between tag teaming.

I praise God for his protection and provision over those six days, those eight months, and these past two years.  We have seen His hand move over and over and over.

And Emmie, well, this was her two years ago:

And today:

She sat with me in church humming the hymns, trying to do the Scripture memory and cuddling sweetly as she slept.  She ran down the steps from Sunday school and placed her head on my shoulder when she was tired.  Have we kissed those precious cheeks that we missed two years ago?  You bet we did!  She laughs.  She plays.  She fights with her siblings and has normal three year old demands.

Our unstable 15 month old old has turned in to a very confident, often silly, and fully loving three year old.  We praise God for all He has done!

Don’t forget about the NF Walk!  Join Team SuperEms Sidekicks or give and help us raise funds to fight NF through the Children’s Tumor Foundation.

Anniversaries

March 30th brought a big Emmie Anniversary.  It was a year ago March 30th that Emmie had her halo removed.  We celebrated with our traditional cookie cake!  It’s still so amazing to look back and see how far God has brought her in her NF journey already.

 

April 27th brought another anniversary.  It’s been two years since Emmie had her first ever surgery (and the first surgery for any of our kids).  I can’t believe it’s been two years since our NF journey became so much more than a mild case.  But, we are so grateful that it has been two years watching her grow and get stronger as each day passes.

Once again…a cookie cake (that I whistfully changed from a three to a two).

 

On a Roller Coaster

It should be obvious, by my absence, that there is a lot going on in our home.  One day, the blog will be updated and pristine and clear and all that fun stuff.  For now, we are schooling, dealing with personal issues, learning English and how to communicate with words not actions, and trying to maintain a house.  Add in a dose of neurofibromatosis and all it’s jazz and sprinkle with a side of renovation bug that seems to have been caught by yours truly.

Yep.  Busy.

Anyway, this week has been a roller coaster of emotions week.  Emmie had an MRI on Tuesday.  We spoke with her neurologist then.  And then she had x-rays on Friday (today) and we met with her neurosurgeon.

Ready for the Roller Coaster Run Down?

On the MRI Ride:
Great News:  Plexiform neurofibromas in her neck are stable!!!  There is no signs of any issues in her windpipe or spinal cord.
Bad News:  MRI confirmed that there is another plexiform on her side.  For my medically curious friends:  It’s in the iliopsoas muscle.  The radiologist was able to find an image of it on a previous MRI in August of 2015 and confirmed that it has gotten “slightly larger.”
Good News:  We praise God that it is not near a major organ in her pelvis and that she has had zero problems with either plexiform over the past year (aside from needing to go up a size in pants because of a larger waist on one side).
Good News:  Because of stability, we’ll be on a monitor/watch and wait stage.
Side note:  Emmie totally rocked MRI day.  She had a later appointment but didn’t have a single peep about being hungry or thirsty.  She stayed occupied with stickers, baby doll and princesses on tv (Ahh, Disney Junior you are are awesome).  All of this in her new Minnie Mouse PJs.  Baby doll got to have her blood pressure taken too and even got a band-aid where she had her IV removed.  We just love our nurses and techs and CHOA!  Also, you know you’ve been in day surgery too much when the staff starts to recognize you.
Now to X-rays:
Great News:  The spinal fusion is working!  Dr. Chern showed me an x-ray from June and then the one from today.  Her fusion is clearly visible and looks amazing!  The bone is grafting just as it should.  He got so excited and ran to find Dr. Reisner (the doctor who treated Emmie when she fell and who placed the halo and followed the traction) and showed him and they both were smiling big talking about how great kids bones can fuse.  She is now on a six month monitoring and will be anywhere from six months to a year with neurosurgery the rest of her life.
Bad News:   Scoliosis x-rays confirmed that she indeed has levoscoliosis.  The curvature degree is 27 in the T7 to T12 area (for the medically curious again). I can’t give any definitive information about what that means until we meet with a orthopedic doctor.  In the meantime, I am sharing the images with our chiropractor and she’ll continue to treat Emmie.

My Tribe

When we got the “official” diagnosis for Emmie, I joined a group of some pretty amazing moms.  Moms who have walked through fire themselves.  Moms who have carried their children through fires and up mountains and through valleys.  I didn’t know when I asked to join what a life line of support these women (mostly moms, some grandmoms and some even dads) would mean to me and to our family.  I introduced myself living in the fog of the diagnosis and many, many hearts and virtual hands reached out, lifted up and loved on me.  Little ol’ me.  A complete stranger until that one paragraph and that one sentence:  My daughter was diagnosed with neurofibromatosis type 1.

These moms have lifted us up, prayed for, sent messages, and suggestions as we have walked these two years with NF.

In June, we pooled our skymiles together and I headed to Texas to actually meet several of these warrior moms.

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This is our Georgia crew with the amazing Dr. Wolf in the middle of us.  Every other year, the NF Forum (for families who are dealing with NF) meets up with the NF Convention (the professionals who are dealing with NF).  This was the year.  Dr. Wolf ate supper with us and then spent the next several hours listening, agreeing, discussing all of the ins and outs of our kiddos NF issues.img_20160618_194416966_hdr Renie was the very first NF mom to message me and has continually poured her heart in to our family and lifted up countless prayers for Super Ems.  It was such a blessing to finally see her face to face!nfmomsrock2016

This is part of my tribe.  Part of my people.  There are a lot of horrible things about Facebook, but this group of moms right here is above and beyond what is good!

Children’s Tumor Foundation is working hard to fund research to give us a world without so much fighting.  Please consider signing up to walk or join our team!

Meet UGGHH!

I decided this past summer that Emmie’s tumors needed a name.  If they were going to hang out with us for awhile, just saying tumors or plexiform neurofibromas can get old.  We asked Emmie what she wanted to name them and clear as day she said, “UGGHH!”  And it stuck.

We ask her what her tumors’ name is and she says, “UGGHH!” We all laugh at her resolve and determination.

I thought I would start out lighthearted with this post since I haven’t posted in a while (sorry, enjoying my new addition while schooling and helping organize a walk etc).

I recently realized we haven’t shared an actual picture of UGGHH.  Our focus has been so much on Emmie’s spine.  UGGHH is stable but it is also very large.  Her next MRI is scheduled for December and we’ll see then if it is behaving itself still.

It’s hard.  Oh so hard.  To look at these pictures and know that this thing is growing inside our spirited, silly, opinionated and loving daughter.  To know that it has wrapped itself around so many nerves that there is never any way to surgically get it out.

But, I felt it needs to be shared.  I think that sometimes seeing is believing and can lead to a better understanding.

So, without further adieu meet UGGHH

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These scans were taken in June of this year.  MRI scans are revered so this is actually her right side.  The top right picture is a cross section (just one…the tumor is through several sections) of her neck.  If you can look closely, you’ll see how it wraps around from front to back.  When she was nine months old, it was actually in front of the spine and pushing the windpipe to the side.  That was the part that was removed.  The removed part was about 1 cm large and made up about 20% of the tumor.  Since that time, it’s also grown down into her shoulder which you can see a little bit of.

UGGHH is the reason we fight, talk, raise awareness, and walk.  UGGHH is the reason we’re organizing a local walk and fundraising for Children’s Tumor Foundation.  Right now, there are a couple of clinical trials we are watching ever so closely.  These trials are bringing hope to those of us who are waiting and watching.  And these trials are funded in large part by Children’s Tumor Foundation.  Not only are these trials and research helping us in the NF Community, they are also benefitting children and adults all over who suffer from various other diseases and disorders.  It’s a ripple effect of hope.

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Will you help us?  Will you join the fight against UGGHH?  Sign up to walk or give to Team Super Ems today.  Every little bit makes a huge difference.

And Action

Emmie has come so far since August last year.  Since it’s now July, I find myself constantly looking at her and marveling at what God has done in her little life this past year.

Emmie’s case is obviously very unique.  When she got the halo on, we requested early intervention services.  We wanted her to be able to learn to be as independent as she could.  I held on to a hope that she would be like every other child her age, but looking back, I realize it’s not that big of a deal.  We got her to the point where she could scoot.  And climb stairs and pull up on things.

A week after the big hard brace came off and the cervical collar came on, her physical therapist came by.  I had told Emmie that morning that we would work on going from laying down to sitting up.  When her therapist walked in, I told her the same thing.

We got to the playroom and her therapist put her on her back.  Without any prompting except our encouraging words she did this:

And she did it over and over and over.  And I cried.

And just like that, our need for physical therapy is done.  This is the best way to get kicked out of something.

First Bath

After Emmie got her halo off, we still had to wait about a month before we could even discuss her wearing a cervical collar to take a bath.  The sumi brace she wore immediately after the halo could not get wet.  When we brought up a cervical collar for a bath, her neurosurgeon agreed that we could do that.  Let me tell you, we didn’t wast a second and at the first avaiable moment, we put Emmie in the tub.

Except, she was very apprehensive and a little unsteady because there was nothing around her tummy.  So, we improvised.DSC_4917 And Mom got in with her.IMG_20160416_174717 And she was happy.

This was her first bath in nine months.  The morning before her bath, we were talking to a neighbor who’s daughter had a minor procedure and could not get a bath for a week.  She stated she was thrileld to be able to give her a bath that evening.  She realized I totally understood when I told her Emmie would get her first bath in nine months!  Perspective.IMG_20160416_170839384_HDRThese wrinkly feetsies are our evidence that Emmie not only got a first bath but that she totally enjoyed it!  It’s great to see that she loves the water even more than she did last summer!

NF Awareness Day 2016

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Two years ago we were enjoying this beautiful little face.  She had come out screaming and yelling and didn’t stop for two nights straight.  Mark and I knew our streak of quiet-sleep-through-the-night newborns had ended.  We couldn’t have cared less though, we had our Emmie Mae.  Our beautiful third little girl.

Our lives, like so many others who have walked the diagnosis road, were rocked to the core when we learned the word.  Our diagnosis…Neurofibromatosis.  We knew Emmie was making her very own unique mark in the world like all of our other kids.  But, this word was a constant reminder.

We spent that first year educating ourselves. That first year was a flurry of doctors visits, tests, and a surgery.  That first year was a year of learning to advocate and lead in providing the best possible care for our daughter.  We now know every road that leads to a Children’s Healthcare in Atlanta.  We now know we have some of the best doctors in the country right near us.  We now know how to speak up.  We now know how to stand up.  We now know how to educate others.IMG_20150517_092644486_HDR Then the second year came.  And joy entered in.  We rejoiced in the value of living in the moment.  Trusting God with the future.  We rejoiced in loving fast and holding tight to each precious memory we made.  To each toddler firsts she accomplished.  We had joy as we lived with a diagnosis, changed a diape, broke up squabbles and just lived.  DSC_0001 (2)

Neurofibromatosis.  It’s become a part of our life.  A part of our ministry.  A part of our story.  A part of His glory.  We hope to continue to raise awareness and to share our story as we continue on this NF journey.

On World Neurofibromatosis Awareness Day this year, I want to share a few facts:

  • NF is a genetic disorder which actually includes three different disorders:  Neurofibromatosis Type 1, Neurofibromatosis Type 2, and Schwannomatosis.
  • All three disorders can cause tumors to grow on nerves.
  • One in 3,000 births gives us a sweet baby born with NF.  That is more than cystic fibrosis, muscular dystrophy and Huntington disease combined.  NF is the least known, most common, rare disease.
  • NF can cause blindness, deafness, physical deformities, amputations, and learning disabilities…that’s just a few things.

For more information or to donate to research to end NF, go to Children’s Tumor Foundation.

 

Super Ems and her Sidekicks

We asked our friend and family photographer, Tracy, to grab some pictures of Emmie and all of her sidekicks before the halo came off.  Yes, we have a gazillion of pictures of Emmie in the halo, but I wanted some professional family ones.  We’ll do some more in her current brace and so on.  A professional photo journal of what God has done.

Tracy did not disappoint, even though we had a grumpy kid.

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Super Ems with her Sidekicks!

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That look on our girls’ face.  Seriously!  She’s got some spunk.

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Eskimo kisses and daddy’s little girl.

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Ready to go on her next adventure.

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Tracy knows us so well and can grab the best pictures!

25 Days

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In 25 days, Emmie will have a CT scan.  After the CT scan, Dr. Chern will make the decision.  If her bones are grafting to the fusion, then she’ll be taken to the special procedures room and the halo will be removed.  If they aren’t grafting, she’ll wear the halo a little longer and then we’ll re-evaluate.

In 25 days, we might be able to cradle our daughter close to us again.  To feel her cheek against us.  I still can’t imagine what that will be like.

She’ll wear her pre-halo brace for a little while and clothes.  Clothes!  Dresses, shirts and pretty much anything cute I can squeeze over that brace.

Please pray for us and Emmie.  Pray that the bones are grafting.  Pray that the bones are strong enough to support her head.  Pray that the surgery will do what it should have done…made her neck straight.  Pray that we can trust God and not “mother hen” her until she is annoyed with us.

So, here we go.  Counting down with a real live date on the calendar.  We have our counting chain made and are ready to start ripping those rings off!