Brace Off, Please

Posted on October 19, 2016 by Abbie

In June, Emmie had a message for Dr. Chern, her neurosurgeon.

That would be “Bace, ah, peas.” Toddler-ease Translation: Brace off, please

She saw Dr. Chern on June 10th and was ready.

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After x-rays and a quick lunch and walk around the hospital fountain, we headed in to see what the x-rays were showing. The time had come. The brace was ready to be no more.

After wearing a brace of some sort for most of her life, she had a hard time letting go.

And she chose not to ask to have it off either. Toddlers never perform on command.

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But off it came!

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And we praise God for giving us such a good neurosurgeon in Dr. Chern and an awesome nurse practitioner (who is so patient with us) in Jennifer!

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Being a super hero is such hard work.

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June Visiting

Posted on October 18, 2016 by Abbie

We got to see Ge and Granddaddy twice in June. One was for Emmie’s brace off appointment (those pictures coming this week) and the other was for MRI time. I keep telling Ge that we’ll actually come for a real-life visit that isn’t wrapped around a medical appointment. I promise. img_20160610_181322607

Emmie discovered the joys of a water fountain to cool her feet off. img_20160610_182138265 And Ge’s iPad was a hit! img_20160611_095122743 img_20160611_095130924 Zoe and I ran to Goodwill to look fro some summer clothes and came across this gem. img_20160611_145508138

Yep, a book about the Netherlands.

But when we opened it:

img_20160611_145500717 It was written in Mandarin Chinese (or Cantonese…I don’t know the difference)!

img_20160611_194357613 Emmie and I grabbed a selfie, because, no brace. img_20160612_085913316 img_20160612_085923169 Enjoying a little Steak n’ Shake in style. img_20160612_105316263

Pull out electronics and my kids will quiet down and gather around.

The Find

Posted on October 17, 2016 by Abbie

We have a neighborhood trade page on Facebook. This can be a good thing or a bad thing. You know, you run across a thingamajig that can do whatsit and it’s only a buck. So, you grab it and throw it in a cabinet never to be heard from again, or at least until you reach in, find it, and then list it on the trade page for fifty cents.

That may be the bad, but the good can go oh, so good. For instance:

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This beautiful armoire was $25! Yes, that’s right, TWENTY-FIVE SMACKAROOS! I snagged it in April with the intention of painting and selling it for profit. As it sat and I brainstormed what to do with it, I decided I couldn’t let it go.

And a plan came together… img_20160418_222311088

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And a project piece armoire became…

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A dress-up closet.

We tallied the cost and with the paint, scrapbook paper, stain and poly, we were under $100 for the whole project. The kids love it! I love it! And I definitely think it went from trash to treasure. Woo-hoo!

Meet UGGHH!

Posted on October 11, 2016 by Abbie

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

emmie-and-ugghh

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.

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.

Announcing…

Posted on August 22, 2016 by Abbie

We are excited to announce

Silas Yaroslav

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

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

We Are Family, Part 1

Posted on August 14, 2016 by Abbie

Our May and June weekends were super busy. I mean really busy.

We kicked June off with a trip to Papa and Grandmere’s where we met a masked man… The kids zipped away on the zipline. Hands down, one of the best investments for our super active crew. There is a fun creek in our hometown and we chose that as a quick meet up with Aunt Yaya and Uncle J and one of the kids’ nephews.
Aunt Yaya and I kept trying to figure out why we had never been out to the creek. The water stays cool year round which makes for a fun, refreshing trip. It’s perfectly wide and just deep enough to wade in. And it has rocks to skip. Or just to sit in. Cousin E found a crawfish and with that captivated the attention of all eight of his cousins.

During this trip, we also squeezed in a family reunion at a local lake.
We all climbed to the top of the silo. That’s my kids way at the tip top. I even climbed to the top…and took this picture.

It’s always fun to meet with family and hear stories of everyone. And see my kids be goofy.

One Year

Posted on August 13, 2016 by Abbie

One year ago, at the beginning of this month, all of a sudden our life was thrown in to a whirlspin. We took a chance. Our doctors tried something that really hadn’t been done on a 15 month old.

One year ago, today, our daughter was stuck in bed with a massive halo trying to stretch her neck straight.

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Six days in halo traction. Eight months in a halo brace. Seven more months in other types of neck braces (five of which her kyphosis broke) for a total of fifteen months in some type of neck stabilizing brace. Six months physical therapy.

Amazing what God can do in one year! She laughs, and dances. She squats and climbs. She lays down and stands up. Chases dogs. Talks to the cats. She says, “I do it!” and usually can. I saw her stand on her tip toes the other day. She gives awesome hugs and kisses and ran to her grandparents this weekend to give hugs. She waves when she sees people she knows and waves to her new big brother. One year. And here we are.

We celebrated with Emmie’s favorite things…chocolate chip cookies and icing.

Today we’re remembering and celebrating. Remembering how far Emmie has come. And celebrating what God has done! Our Super Ems is a walking miracle. We thank God for giving her doctors wisdom to help save our Emmie’s neck.

And Action

Posted on July 12, 2016 by Abbie

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.

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May Randoms

Posted on July 11, 2016 by Abbie

Our May photo dump will commence now. IMG_20160503_115751355 Double piggies and a fun cooking apron. IMG_20160503_174708094_HDR First time swimming in nine months. This was one happy girl. We were glad to see her love for the water hadn’t changed. IMG_20160503_185556035_HDR We have Taco Tuesday every week. This one Tuesday, she decided she liked tomatoes. And grabbed the serving bowl. And dumped them on her plate and ate them all. IMG_20160508_111136 We were so excited that we had Mark’s mom, Grandmere on Mother’s Day. Having a baby close to Mother’s Day has its advantages. Malachi, our resident snuggler, was super happy to get cuddles during church. IMG_20160508_114317574 Mother’s Day. Holding our baby close. It was a good day. IMG_20160508_120520303_HDR Papa snuck in some cuddles too. IMG_20160508_181434449 Zoe and Mark made a yummy fruit pizza for a church fellowship. It was completely gone by the end of the night. IMG_20160508_194258772 My lap was full. IMG_20160509_192016354 Emmie loves to stack and build. IMG_20160519_104037732 So does Ceili Rain. IMG_20160522_090550970_HDR First time riding facing forward. IMG_20160522_172840144_HDR And three out at the same time. A record. IMG_20160530_094209944 Double piggies and patriotic. IMG_20160531_165407952 Puzzles are a thing around here. They like to put them together several pieces out and then put those back in. This was a difficult puzzle but with only a few pieces left, Bryant decided to tackle it. With great concentration.
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There is always music (or some other noise) in our house. Always.

Spring Visit

Posted on July 10, 2016 by Abbie

The plan was for Emmie to have a MRI at the end of May. Unfortunately, the day before the MRI, we were told she would have to have it under general anesthesia because of the spinal fusion. So, despite issues, we took our lemons and made lemonade and got in a much needed visit with Ge and Granddaddy. Ge also got some pretty amazing pictures of Emmie with her daddy.
These two have a very special bond. IMG_20160525_085504809 The boys set up “dominoes.” IMG_20160525_091759757 Malachi got some cuddles. IMG_20160525_092554135 IMG_20160525_092600515 Ace channeled the Bear (if you don’t know who the Bear is, you don’t know Alabama football). IMG_20160525_100959784 IMG_20160525_130049165