Capital Visit

I took Saturday afternoon off from the NF Forum and went a few blocks down to the state capital!  I was told this was one of the must sees in Austin.  It did not disappoint. It is definitely Texas-sizedimg_20160618_152416825 img_20160618_144700775 In their congressional area.dsc_5612 ON the front lawn of the capital.dsc_5606 There were statues all over the grounds. dsc_5604 dsc_5603 A rotunda that was added when they needed more space (instead of building out, they built down and added over 600,000 square feet underground.dsc_5602
dsc_5598 The chandeliers spell out Texas and there are Texas stars everywhere.
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This was the governor’s house.  He was not there but I got to hear him speak later that evening at the forum!


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.


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!

Travels with Abbie

I took an adventure on my own in June.   I texted Mark throughout my travels.  This is how it went down:

Me:  Mark, I’m waiting to board the plane.  There is a guy sitting near me with shifty eyes and he keeps landing on me.  Please pray he isn’t sitting next to me.

Me:  Oh my goodness, there is a lady carrying an urn…AN URN!!!!  There’s a dead body flying with us.

Mark:  Not a body.  Just ashes.

Me:  She has it casually tucked under her arm like it is a book.

Mark:  Maybe it’s her security urn, like a blanket for some people.

Me:  “Oh this?  This is Bob.  He travels everywhere with me.  Dontcha Bob?”

Mark:  Such a nice traveling companion, so quiet, a good listener.

Me:  The flight attendant at the gate says, “I hope you all are flying some place cooler than Georgia.”  Texas Ma’am.  I’m flying to Texas.  It’s the second level of hell in Dante’s inferno.  What in the world made the forum planners choose Texas in summer?  “I know guys!  What wouldn’t be more fun than hanging out in Texas in the middle of summer?”

Mark:  Can you see me at the gate?

Me:  Nope.  I see a wall of plane.

When I made it to my layover this went down:

Me:  Grabbed breakfast and made a cat friend.  Guy on tram grabbed the two poles between him and proceeded to lean forward as far as possible.  Got to his stop, stood straight slowly with eyes closed and got bags and walked off.  Guy beside him kept looking at him and shaking his head.  I had to bite my lip not to laugh.

Mark:  A cat friend?


After finding a frappucino to ease my weight…

Me:  Did you know that while you wait for your flight you can practice your CPR skills?

Mark:  CPR?

Me:  Yes.  Cardio pulmonary resuscitation.


And I scored an upgrade on my car!


I don’t think Mark will ever let me travel alone again.  He missed out!


MRI Number Six

img_20160623_081729085 Since Emmie is now in the general anesthesia camp for MRI time, we have to go to day surgery instead of to radiology.  That means a different way to do things (they have to intubate for long MRIs and such).img_20160623_085640722

But there’s still the waiting time.


Bonus is she gets “happy juice” before being wheeled back and that means less panicking on her part.img_20160623_091807278_hdr img_20160623_094056729



Super Ems says, “I’m awake! Let’s eat some popcorn!”

This was a long MRI because they checked out her eyes, brain and full spine but she came through like the super hero she is.

We praise God that, for now, UGGHH is stable.  Her next MRI of UGGHH is scheduled for December.  She won’t have to see Dr. Wolf, her neurologist, this next time.  But she will get to visit with Dr. Chern.

Could there be a world where we don’t have to worry about MRIs?  Yes, there could be!  Supporting us and joining our NF Walk team is one of the ways to make that dream a real-life possibility.


Brace Off, Please

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.


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.


But off it came!


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!


Being a super hero is such hard work.



June Visiting

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_145500717It 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

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


And a project piece armoire became…



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!


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


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.


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

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…DSC_5473 DSC_5476 DSC_5477 The kids zipped away on the zipline.  Hands down, one of the best investments for our super active crew.DSC_5480 DSC_5485 DSC_5494 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.
DSC_5523 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.DSC_5525 And it has rocks to skip.DSC_5526 Or just to sit in.DSC_5529 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.
DSC_5535 DSC_5544 We all climbed to the top of the silo.  That’s my kids way at the tip top.DSC_5546 I even climbed to the top…and took this picture.DSC_5557 DSC_5563

DSC_5574 It’s always fun to meet with family and hear stories of everyone.DSC_5566 And see my kids be goofy.