Out of Doors

“In the spring, at the end of the day, you should smell like dirt.”  -Margaret Atwood

March brought in some pretty amazing weather and we gladly soaked it up!  The weather was so nice that I begged an ouutdoor bell from Ge so that I could call the kids when they have adventures up on the hill.  May starts snake season and they don’t like to venture up there during those times.  So, the bell will have to wait to be used until the fall.

DSC_4806 DSC_4808 Football…DSC_4809 with dad… DSC_4817 is awesome!IMG_20160322_124638059 Mark had jury duty a week before Emmie got the halo off.  He had called and explained our situation to the court person and she assured him that nothing big was coming up and he needed to come on in.  He had to go in on Tuesday, got called back and then promptly sent home.  He was home by 11 and we got bonus time with dad.  The kids introduced him to our picnics on the front lawn.  We have been doing these even before we moved in to this house.  IMG_20160322_130811585 Emmie decided she needed to take daddy on a walk and show him the place.IMG_20160323_171128170

Emmie loves her little red wagon.  One day, she decided that she didn’t want to be pushed anymore.  Instead, she wanted to pull me.  She showed me right where to sit and promptly walked to the handle and grunted and heaved trying to pull me in it.  Imagine how upset she was when she realized it wouldn’t budge.

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Happy Easter!

I think I’ve mentioned before how dear and special our Resurrection service is at church.  If not, here goes.  We get up before the crack of dawn (that’s early ya’ll), and enjoy watching the sunrise over the trees while we worship God and hear about the miracle of the resurrection.  Then, our kids’ adopted grandparents prepare a breakfast like you would not believe.  After that is a time of praise and worship and testimonies.  We’re usually home just before lunch and are full both spiritually and physically!  Usually, the kids rush to change clothes and then play or lounge around.  This year, we managed to wrangle them and get pictures before they dispersed.DSC_4822 The girls pick out the fabric for their spring dresses.  I wanted a coral and blue but they wanted blue, green and yellow.  Blue and green for NF colors.  Yellow and blue for Y the Brave’s home country.  Then, the girls get to pick out the pattern they either want to try (for Zoe) or that I get to tackle.  I’ve used the pattern for Ceili Rain’s dress before and I completely forgot about how much fabric it took.  It was a lot ya’ll!  Zoe’s skirt was from Marie Madeline Studio.  I’ve had my eye on it for years and Zoe was excited to try it this year.  She was nervous about using different patterns of fabric, but I think it came together perfectly.   I used the pattern for a skirt for me as well except we didn’t have enough variety of fabrics, so I went with just one.  Next time we use the pattern, we’ll both have to go down in size or sew the seams a little further in.  The finished skirts were way too big!DSC_4826 DSC_4833 DSC_4836 Look at those boys!  I can’t wait to see six silly boys in that picture.DSC_4843 DSC_4848 Emmie was napping on the first go round. So, we had to wait until later in the afternoon to include her (then it started raining).  I made two dresses for her so that she could match her sisters before the halo and after the halo.DSC_4868Emmie says, “This IS my silly face!”

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Happy 4th Malachi!

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Malachi is our first immediate family birthday of the year.  Malachi is our resident four year old going on 40.  He always has something wise to say but can quickly follow it up with a fit because his shoes were not tied just so.

He fulfilled my dream this year by requesting a cake with cars on it.  And no.  I did not coax him in to it.  It was all his idea (as it typically goes with him).

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He was super happy with his race car cake.  And I was super excited to find race car candles!

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He also requested breakfast pizza.  We’ve never had breakfast pizza.  So, I’m not sure where he got the idea from.  I coated tortillas in cinnamon, sugar and butter and broiled them.  Then covered in a cream cheese mixture and topped with the fruit.  Looks fancy and takes very little effort.

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His birthday fell on a Wednesday which meant he go to share his cake with his friends at Awana.  I think he thought it was pretty cool that everyone sang, “Happy Birthday!” to him.
DSC_4751 This was a birthday of awesome faces too.  Ya’ll, he’s just too cute for words.DSC_4745 DSC_4734 DSC_4731 DSC_4729

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The cardboard space shuttle was a big hit for everyone.

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Ge won major brownie points with this pj shirt!

His birthday activity of choice was to go to our local indoor jump place.  Remember, the one he wasn’t going to jump in?  We went the following Monday since they offer family nights then (we all got in for one price).

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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!

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February Randoms 2016

Our photo survey from the month of February.  The theme includes Emmie.  She was kind of a big deal in February.1969 Okay, one picture of our special Frodo the Cat.  He got sick after we returned and unfortunately, passed away.  It was a very tough time for us.DSC_4631 DSC_4674 IMG_20160202_122651887 Park play day.  After a series of cold day, well, sort of cold, it’s the South after all, we like to venture out to the park.  Warm February days are the best too because the pollen hasn’t arrived.

IMG_20160202_122700294 IMG_20160202_123039633 IMG_20160203_135801646_HDR First time giving blood.  It just took our Super Ems to motivate me.  We were able to bank my blood and Grandmere’s for Emmie’s surgery.   She did need some.  So, we were both grateful we could give (and through a big miracle for Grandmere) to help her and I learned that it’s not as scary as I thought.  IMG_20160205_081330326 Any Trim Healthy Mama will know this yogurt.  And will also know the sadness in having it consumed by a cute toddler.  She likes it so much, I have to sneak it before she can see me or she’ll eat the whole cup.IMG_20160208_135717310 Frodo loved to nap with Emmie.  He tried several times to cuddle next to her but she would squeal and get excited and he’d settle for sleeping near by.IMG_20160208_200248773 What’s better than one bow?  Two!IMG_20160210_102201354_HDR Liam is learning sme better distraction techniques so he can finish school.IMG_20160210_122747375 See the yogurt face.  IMG_20160212_094348687 IMG_20160214_081746721_HDR Sour cream doughnut hearts for Valentine’s day!  Oh yeah.IMG_20160214_205423808 IMG_20160216_094139136_HDR IMG_20160224_135314598 IMG_20160225_192921467 IMG_20160228_143218011_HDR Climbing stairs (with lots of help) after being discharged.  She had to have help and rest half way but she was thrilled to walk up.IMG_20160228_143225693

And Malachi had to get a picture too.

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Building It

Emmie won a gift certificate from the kids’ dentist office in December.  They were thrilled that she won (we have an amazing dentist office) and we decided to wait until closer to surgery to take her in.

She walked in like she owned the store and knew exactly what to do.  She tested out each animal and was thrilled to choose the Wonder Woman super bear.

IMG_20160203_151659105 IMG_20160203_151749097 She tested it out to make sure it would work.IMG_20160203_151917846 And helped pick out a couple of outfits.IMG_20160204_092129205Meet Super Bear.  She has been through surgery and will head in next week with us for the CT scan.

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Jammin’

In February, we were able to attend Winter Jam.  The four biggers braved a late night with mom to listen to some wonderful music and worship Jesus.
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Liam almost couldn’t take it waiting.  Climbing brick walls.

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All they wanted was to see For King and Country.  Poor Josiah almost didn’t make it.IMG_20160211_224331580

Finally…we got to see For King and Country.  The other bands/acts were good but we were totally thrilled to see this group.

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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.

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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.

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The First

Emmie had spinal fusion surgery on February 17th.  Remember when I said that NF was a marathon?  February 17th was one of the longest miles.  She went back with her neurosurgeon at 7:30 in the morning and we saw her at 8 that evening.

The logistics went like this:  They went in to the front and took out two vertebrae.  Then they stitched her up, flipped her (with the halo for stability, breathing tube in place, etc).  They put in metal rods in the back of her neck, secured with hooks.  Secured with hooks because they don’t make screws small enough for her bones.  Then they closed her up, flipped her.  Again.  And replaced the two previously removed vertebrae with a straw filled with her bone.  She spent 24 hours on a ventilator and only had a slight dip in her breathing when it was removed.  She was on narcotic pain relievers Wednesday and Thursday but by Friday morning pain was being controlled with acetemetophin only and we were moved to a regular room.  We are also pretty certain that valium makes her throw up.

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Going over the details with Dr. Chern.

To say this surgery was extensive is an understatement.  It was intense and a lot of work and a lot of quick thinking and planning on our neurosurgeon’s part.  He and the whole surgical and orthotic staff were amazing.  Emmie’s orthotist came out each time he was with her to give us a personal update.  Dr. Chern came out of surgery and was so great at going over everything they did and how she did.

They straightened her spine, ya’ll.  It went from this:

cropped to this:  IMG_20150802_193024787in a matter of hours.

She did well in the hospital.  Over the weekend, we were worried because she refused to stand.  When we brought it up with Dr. Chern, he wanted to get some x-rays done and have physical therapy come by.  We were just trying to rule out muscle and neurological issues.  By the time physical therapy came by, she showed off and walked to the bed with no problems.  She continued to improve enough throughout the day for us to go home on Tuesday.  Six days in the hospital.  And then home.

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Recovery is going to take some time.  In adults, kyphosis surgery is not nearly as involved as hers had to be and it takes about two to three months to recover.  Six months to fully recover.  But, she’s up and walking.  She’s laughing and talking and this weekend she wanted to climb stairs.  Each day she is getting stronger.  We’re continuing with the over-the-counter meds of ibuprofen and acetemetophin and that keeps her mostly happy and going.

To our knowledge no one has really done spinal fusion for kyphosis on a child under 2 years of age.  She’s one of the firsts.  She was a first for our doctor.  Doctors all over the country are watching and learning from our Emmie.  Whether this is a permanent fix or not, we know that God is using Emmie to help children that come after her.  We can’t wait to see how God is gong to write her testimony (or any of our kids for that matter).

What’s next?

Next comes the biggest step.  Emmie will go back sometime in around two weeks.  She’ll be put under general anesthesia and they’ll do a CT scan to make sure the bone is grafting to the rods and straw.  If that is confirmed, they’ll take her in to the special procedures room and remove her halo.  She’ll wear the neck brace she had before the halo for a few more weeks and then she’ll be brace free.  For the first time in over a year.

And then we watch closely and pray.  If she has spinal stability over the next six months, we can consider the surgery a success and no longer have to worry about kyphosis.

At some point after the halo is removed, she’ll also have an MRI to check on the growth of the plexiform neurofibroma.  We were unable to do it in the halo because it would present with artifacts (distortion) and make it impossible to see what is going on. The rods and plate may cause some distortion but it should not be as bad as when the halo was on.

Was.  I can not imagine life without the halo.  It’s just become a part of our lives.  Part of who she is.  And yet, I can not wait to feel my baby’s cheek against mine.

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