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!

Hospital Days Pt 2

Emmie slept most of the day on Thursday.  She had to have a little oxygen after the vent came out but that was only for a couple of hours and it was a very low flow.  When we moved out of PICU Friday, we got to really see her come back around.  She saw her toys and wanted to play.12755047_10208641503178739_1848984737_o
And, of course, go for a walk.IMG_20160219_161001117

The kids all came for a visit on Saturday and Emmie couldn’t have been more excited to see them.

IMG_20160219_161634625 The beautiful weather meant a trip outside. IMG_20160220_134942760 IMG_20160220_141133271

Emmie enjoyed watching a construction crane in the parking lot.IMG_20160220_140055155 IMG_20160220_135201406_HDR IMG_2919

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Grandmere and Papa were awesome and so willing to help.  They got to watch the kids for a few days and then Ge and Granddaddy got the same privilege (at least I hope they think it was a privilege).

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Our first happy time in the therapy chair was on Monday morning.IMG_20160223_120423070

Emmie’s room.  All cleaned up and ready for us to head out.

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She broke out on Tuesday right as we got there and discovered that the parking lot was full. No worries as I circled back around and she got valet treatment.
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Our traditional meal at Chick-fil-a after discharge.  She loves the chicken nuggets.

Hospital Days Ahead Pt 1

The day before surgery, we took off to Atlanta for Emmie to have her pre-op appointment.
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Mark and I were in awe.  She walked right up to the scale, allowed Mark to help her up and stood there while it took her weight.  Then off she traipsed to the room.

IMG_20160216_123951796_HDRWhere she lifted up her leg for the blood pressure cuff and stuck out her finger for the pulse ox.  Not a single whimper or cry.  That was a first.  She knows the drill now.  We’re so excited that the stresses of a normal vital check are over but so sad to know that she has gotten used to this and it’s just a part of her life.IMG_20160216_124439082

The fun little cozy coupe did not hurt her calm demeanor at all.

After a quick blood draw we were off to have some fun.  We went to a local mall that had an American Girl store and a carousel.  Both were big hits!

12744040_971356672957814_6174094060143595552_nA sweet blessing at the American Girl store came as we spoke with one of the sales clerks.  She wanted to know all about Emmie.  I mentioned she was having surgery the next day and we wanted to do something special before then.  Emmie spent the whole time playing with the babies and the play food.  I talked Mark in to getting a diaper bag for her (it came with goodies, ya’ll).  As we were picking out stuff for it, the store manager came over with a bag of stickers, coloring sheets and all sorts of prizes.  I felt bad because all Emmie wanted to do was play with the babies at the time.  She definitely has enjoyed those goodies since then and American Girl made sure to win us over even more with their sweet sales staff!IMG_20160216_164519528
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Emmie loved the carousel but didn’t want to ride the horses.  Just give her a bench to sit in and go around and around on and she’s happy.

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We then went out for supper at a much recommended restaurant.  It was pretty good.  This was our (Mark and I) Valentine’s day celebration.  Emmie was so sweet and content to eat her fruit and fries while Mark and I chatted away.  Okay, we chatted with her too.

 

We have family of family that lived near by and had offered a long time ago to allow us to crash at their carriage house if we ever needed to.  We decided to take them up on the offer for this trip.  It was so nice and quiet and perfect for a quick rest before heading to the hospital the next day.  This is what she did when she realized she was going to share our bed.IMG_20160216_204245368

After Emmie and Mark got a good night’s rest (nerves and prayers woke me up at 2:45 a.m.), we headed to the hospital. IMG_20160217_061156111 Papa and Grandmere made a super early morning trek to be there before surgery.IMG_20160217_055648421

I realized in the waiting room that we had not gotten a picture of her curls and I snapped one really fast knowing they may all be gone by the end of the day (they had to cut/shave the bottom half of her curls).

IMG_20160217_063658609 In our personal surgery room just waiting.  She did good again with the blood pressure cuff and pulse ox.  IMG_20160217_070445449_HDR After her happy juice.  She was as good as can be.IMG_2906 The anesthesiologist came by and talked with Super Bear.IMG_2905

Grandmere and Daddy just hanging out.

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Let the waiting begin.  This was after lunch as we watched the surgery waiting room slowly clear out until only us and an emergency surgery family were left.

12745619_971691622924319_7675328260496025913_n Meanwhile back home…The kids had gotten the shirts in on Tuesday and were ready to show their support on surgery date.  Aunt Tracy came by to get her shirt as well.12745600_971691636257651_3875258617570727780_n 12733365_971691666257648_4096551291608311270_n That right there is a good friend.  Braving my children, her children and a few extra while unknowingly preparing to deal with a stomach bug after she left (three of her kids and herself got it…only one of ours did).10414570_971691679590980_3495728045918124308_n

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Ge and I checked out the garden.  And Ge promptly cleaned out the fountain.  It was cold ya’ll.  But she said the pump would get clogged and it needed to be done.  Anything to keep busy, right?

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Then time passed and we had her.  We were with our girl.  I was not prepared for how hard it would be on her.  The silent cries as she tried to tell us she was hurting and uncomfortable.  We know the ventilator was necessary for her protection but we were so glad when it came out.  We were told she would be sedated and they tried.  Oh how they tried.  But, the forced air from the ventilator kept waking her up and making her uncomfortable.  They had her on three to four different sedation meds and she never could get in to a good sleep until the respiratory therapist turned off the ventilator at 4 am.  Then sleep.  Glorious sleep. She rested so well until morning rounds when they removed the ventilator.

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Then we got to hold her and let her sleep some more.

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That evening, she got to see her brothers and sisters on skype.  I know it doesn’t look like much here but her whole attitude changed once she saw her sidekicks.  She was thrilled to see them all.