Family Time

Thanksgiving weekend was spent with Ge and Granddaddy.  Always a blast.  Especially when we can watch Alabama beat Auburn! Ace exploded sticks-a gift from Aunt Yaya and Uncle J. We went downtown (before the game, of course), to celebrate Small Business Saturday.  Bryant loved his birthday gift from Aunt Yaya and Uncle J. Emmie was ready for the game.

Silas enjoyed Steak n’ Shake this time.

Announcing…

We are excited to announce

Silas Yaroslav

joined our family on August 9th 2016 around 4:30 p.m.

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Our new family with the inspector and Silas’s director at his school.

This has definitely been my longest “pregnancy”  but every second was worth it to have Silas be our son!

We had a great court and were so excited by the support of everyone involved.  It could not have gone smoother.

I know several of ya’ll are scratching your heads trying to figure out who Silas is.  Well, when we went on our “first” first trip, a name change was discussed with our facilitator. We decided to ask Silas what he wanted.  We knew we wanted to keep his birth name, Yaroslav, because he was named after King Yaroslav the Wise.  We chose several names that we knew were distinctly American names.

We went through several names  and he shook his head no with all of them.  Until we landed on Silas.  He gave a resounding yes for that one.

When we took our “second” first trip this past July, he was still very definite that he wanted Silas to be his first name.  After court, Silas was definite that we should call him that.  And he corrected his siblings when they tried to call him Yaroslav or Yarik (the nickname for Yaroslav).

So, our Y the Brave (also known as Yarik the Brave) is now Silas the Brave!

And to note:

Silas is sometimes a Greek variation of the Aramaic Saul which means “prayed for”

Yaroslav means “fierce and glorious”

Our baby, the one we have prayed fiercely for.  The one who has made us see God’s provision over and over.  Who is tender and determined and who is ours forever.  What a journey we have been on and yet, have just started!

Silas’s life verse is so fitting for the start of his life with us.

On the glorious splendor of your majesty,
    and on your wondrous works, I will meditate.
They shall speak of the might of your awesome deeds,
    and I will declare your greatness.

Psalm 147:5-6

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!

March Randoms

Enjoy this smathering of pictures highlighting the month of March.DSC_4766 DSC_4871 When Emmie first came home without the halo, she was unsteady on her feet.  But she fit in to a smaller stroller! She still helped do the dishes though!DSC_4896 IMG_20160301_123400052 The pantry is a great place to hide from mom and dad (and open a bag of chips nearby for a quiet snack.).IMG_20160301_172331262 We got a new tricycle for Emmie that has sides on it.  More for our peace of mind than hers.IMG_20160302_114252904 IMG_20160302_114315348_HDR Just taking a picture with The Godfather of Funk.  Our city has undertaken a great art project.  Local artists were commissioned to paint the light boxes all over the city.  When we visited downtown in March, the kids had to get a picture with the James Brown box.IMG_20160305_132443079_HDR Our annual PJ Day at Bruster’s Ice Cream.  If ya’ll have one near you, every March, they offer free ice cream if you come in your pjs!  It’s totally worth the embarrassment.IMG_20160307_181305498 Emmie received this crocheted bunny rabbit as a gift from a neighbor.  This bunny has been through a CT scan, surgery and many other things faithfully.  Emmie named him Hop Hop and loves to take him on adventures.  The other day, she had Hop Hop holding hands with Baby so they could take a nap.  I really need to see if I commission our neighbor to make an identical one so that Hop Hop can get a bath in the washing machine without causing major trauma to Emmie.
IMG_20160307_181318295 IMG_20160309_112412343_HDR This breaks my heart even now.  Emmie fell out of chair in March.  It scared me deeply and meant an extra trip to the neurosurgeon and extra x-rays.  About twenty minutes after the fall, she was doing this.  She had gotten up, walked over to the cat toy and sat down to play with Winter.IMG_20160310_104211413 Ceili Rain was proud of her wedgit tower!IMG_20160313_160358056 Emmie.  And chocolate.  Enough said.IMG_20160316_140814000_HDR IMG_20160317_111454304 What happens when you brace yourself on wooden poles while moving a heavy object upstairs.  Ya’ll take a guess who did this.IMG_20160318_165520034

We have a very talented niece who lovingly made this for Zoe and sent it to her!  Super cute!IMG_20160319_153625293 Teenagers and their teenage friends.IMG_20160325_113046455 Date day.  Made possible by great friends who willingly take on all eight of your children.IMG_20160326_095153278 Schoolwork.IMG_20160326_095208853 IMG_20160327_201529182 This was the first time Emmie has actually sat down to play with someone other than her family.  It was so fun watching her play with Miss T and interacting with her.  IMG_20160329_113034165_HDR Cuisinaire Rod Art by JosiahIMG_20160331_091222380 Yes, you have my precious.IMG_20160331_093305787 Toothpaste Man.IMG_20160331_093314951 Um, Odd Man Out?!IMG_20160331_093332061 Thoughtful CeiRaiIMG_20160331_093346699 Queen Armadillo (I know that’s not her name but take quite delight in messing it up so the kids can correct me)IMG_20160331_102508574 Rocking it with smiles the day affter surgery.  She has two bows in her hair because that’s what she asked for.IMG_20160331_113908152_HDRNaptime on mommy.  She was still feeling the effects of the meds the day after surgery.

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.

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!”

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!

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.

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.