Super Sibling Sidekicks

We get asked often about our kids’ responses from all of the things that Emmie has gone through with neurofibromatosis type 1.  I think I understand what they are asking but all we know is this:

Emmie’s siblings absolutely adore her.  It amazes me how, from the first time they met her, they have all been tender and caring and loving towards her (truth be told:  that is how all of them have been with all their new baby siblings).  When we found out Emmie had NF, they never wavered in their devotion and love and support.  They understand (with wisdom beyond any I can explain) that we would give them the same kind of attention if they needed it (when she needs that extra medical attention).  Any bump, bruise or fall…even now…leads to several siblings running to make sure she is okay.  We have been open and honest with them, at their appropriate age level, about each thing she has faced.  When they ask questions, we answer them honestly.  They are Emmie’s strongest cheerleaders, pushers, supporters.  I could not imagine Emmie not having them!  In turn, they have taught our kids how to be compassionate to others.  I believe the kids are learning to have empathy for others who may not be quite like them.  They are learning that people are all created in God’s image even if they have bumps on their skin, visible plexiforms or severe learning issues.

Liam and I were talking one day and he asked me if I could have one wish, what would it be.  I said that Emmie and others did not have to born with NF.  Liam replied wisely, “But Mama, if Emmie wasn’t born with NF, then you wouldn’t have met all the amazing people you have.  Maybe we should just wish there would be a cure for NF!”

So, when people ask me how the kids handle all of Emmie’s “attention” I respond absolutely truthfully, Emmie is the favorite sibling.  Not our favorite child (we work not to do that) but she is definitely a favorite in the siblings.  And when I say that Emmie has Super Sibling Sidekicks, I am definitely sharing the truth.

Proof is definitely in the pictures too!  These are just a few I have managed to capture and don’t even come close to showing all of their love! That’s Emmie behind the book.  Ceili Rain is a wonderful book reader for her. And a good napping companion.  When Emmie fell asleep, Ceili Rain placed the blanket on her. Siblings make excellent pillows.

Staying warm together.

You have an awesome chance to be a part of Emmie’s sidekicks even if you aren’t a sibling!  Donate or join our NF Walk team today!  Our walk is less than three weeks away.   Donations to our team go towards research to help end NF and get closer to our wish!

Two Years

Two years ago today, we walked into a hospital kissing and hugging our little 15 month old daughter closely.  It would be 8 more long months before we could feel her cheek against our lips or her head resting on our shoulders.  After this day, two years ago, six of the longest and hardest days of our lives followed followed.  We watched our daughter, lay in a bed weighed down trying to stretch her neck out to gain her just a little more time before spinal fusion surgery.  Mark and I were on the road twice a day swapping up our time between her and the rest of the kiddos and seeing each other only briefly between tag teaming.

I praise God for his protection and provision over those six days, those eight months, and these past two years.  We have seen His hand move over and over and over.

And Emmie, well, this was her two years ago:

And today:

She sat with me in church humming the hymns, trying to do the Scripture memory and cuddling sweetly as she slept.  She ran down the steps from Sunday school and placed her head on my shoulder when she was tired.  Have we kissed those precious cheeks that we missed two years ago?  You bet we did!  She laughs.  She plays.  She fights with her siblings and has normal three year old demands.

Our unstable 15 month old old has turned in to a very confident, often silly, and fully loving three year old.  We praise God for all He has done!

Don’t forget about the NF Walk!  Join Team SuperEms Sidekicks or give and help us raise funds to fight NF through the Children’s Tumor Foundation.

Anniversaries

March 30th brought a big Emmie Anniversary.  It was a year ago March 30th that Emmie had her halo removed.  We celebrated with our traditional cookie cake!  It’s still so amazing to look back and see how far God has brought her in her NF journey already.

 

April 27th brought another anniversary.  It’s been two years since Emmie had her first ever surgery (and the first surgery for any of our kids).  I can’t believe it’s been two years since our NF journey became so much more than a mild case.  But, we are so grateful that it has been two years watching her grow and get stronger as each day passes.

Once again…a cookie cake (that I whistfully changed from a three to a two).

 

See you in Seattle!

At the end of March and first of April, I had the great privilege to attend the NF Symposium in Seattle.  Not only that, but I also participated in the Children’s Tumor Foundation’s Volunteer Leadership Committee.  It was a great experience and, as it turned out, my roomie for the weekend was also newly pregnant.  We were able to commiserate together and I succeeded in getting us a little lost too!

We go there Thursday afternoon and were able to do a little touring before the training started the following day.

Of course we visited the Space Needle.  This was my second time there and just as neat as the first time.

We also hiked down to Pike Place.  This was a vat of fresh cheese.  I really wanted it but my pregnancy belly said, “nope…you don’t.” A scalpie for Facebook.  This is an ongoing joke about my parents who are also known as the self-proclaimed “Scalpie Pros.”

I don’t know what I was doing here.  Proof positive that I take the corniest pictures.

After walking endlessly, we finally found a place to eat…

We had pizza…and it was so good ya’ll!

The coolest thing was finding Benedict Cumberbatch’s doppleganger on the train.  Well, Cumberbatch as Sherlock.

Mark didn’t agree but from a distance, trust me, Random Train Guy looked like him.

Aside from the fun touring, I learned a lot about what exactly Children’s Tumor Foundation is doing and there is so much hope for treatments for Emmie in the future!  It is great to be raising funds for an organization who has a passion for research and integrity.  I told Mark that after learning all that CTF does to fund research, I am even more encouraged in supporting their efforts to end NF!

 

Speaking of CTF, join us on our next walk coming up in September OR donate to Team Super Ems’ Sidekicks!  https://join.ctf.org/events/-/e129272

Braced Again

Emmie got her seventh (I believe that’s right) brace in February.  Thankfully, this brace wasn’t on her neck!  We talked a big game leading up to Brace Day and she was excited to pick up her Super Ems Brace.  She never once complained about how long it took (a little over an hour) to get it fitted just right.  She was up to the required 20 hours before the week was over.
I had to get Emmie this dress that reads, “I’m a super hero.”  She totally rocked it too! Are we excited or what?!  Actually, she went through a phase in February where we would say, “Smile.”  And this was the result.  We now get a half a smile.
A quick picture before we hit the road to go back home…my poor photography skills. The next day, though, I caught her silliness along with a Bryant photobomb.

She happily showed off her brace for me!

In another month, she’ll have x-rays to see if her spine is stable and we’ll meet with the orthopedic surgeon (as well as several of her other doctors and have an MRI).  Please pray her spine is stable and she can go to nighttime with the brace.  I’m anxious to get her fully potty trained before baby comes along.  That is impossible with this brace.  She’s not secure enough in going to just wear undies over the brace.  This means we have to take the brace off every single time she has to go to the bathroom…and then put it back on. The suggestion was made to just put the pull up over the brace…I’m not cleaning that up ya’ll.

One Year!

February 17th, 2016 will be one of those days we’ll never forget in our family.  That was the day of Emmie’s spinal fusion in her neck.

For this one year, we celebrated big time by going to an indoor playplace.  It was a huge hit for all the kids!

We followed it up with her favorite supper, chicken nuggets and fries.

And cupcakes that she picked out, ate the icing off and was happy as a clam.

Looking at where we were a year ago, we are in awe of all God did for our beautiful little super hero.  We have no clue what is in store for our amazing girl but we thank God for each day she is acting like an almost three year old and for all He has done for her these past three years.

A Look Back…

This is our yearly Christmas/New Year Letter.  So here we pause, and take a look back at what 2016 held for us:

Our biggest highlights:

January saw our new son Silas still in Ukraine having to celebrate his ninth birthday without us.  We’re grateful that we were able to send a cake to him to help him celebrate.  We also found out that we would not be able to continue the adoption process until that summer.

In February, Emmie had spinal fusion surgery in her cervical (neck) spine.  This was a big highlight in our year since no one knew exactly what would happen or how she would do with it.  We praise God that she not only made it through surgery with no complications, but we are now 10 months out and the bones are fusing!

March brought two beautiful kiddos birthdays, Ceili Rain turned 7 and Malachi turned 4.   We enjoyed celebrating Easter with our church family.  Emmie had her halo removed (after 8 months in it) on March 30th.

April was a much cherished and random “quiet” month if you don’t count the kids’ annual school testing and mom’s weekend away with Tracy.  Mark and I celebrated 20 years of dating.

May passed by with Emmie’s 2nd birthday.  We had a wonderful beach trip, watched brave pirates, and met some sea lions.  We turned in our dossier 2.0.  And Mark and I celebrated our 16th year of marriage.

June was another quiet month but news came we would be traveling to Ukraine in July (and later in August).  I traveled to Austin, Texas for the NF Forum.  Emmie had her final neck brace off on June 10th!  Emmie had her sixth MRI and found her UGGHH was stable!  We celebrated Josiah’s 9th birthday.

July saw Zoe (her first plane ride and international trip), Mark and I traveling to Ukraine for our “second” first trip.  We got to visit with our Silas, sightsee in Kiev and in Vienna.  While recovering from jet lag, we managed to celebrate Ace’s 12th birthday and Bryant’s 6th one!  And, last, but not least, Mark’s birthday.

August was THE month to have Silas become a permanent part of our family.  He became a Character, officially, on August 9th.  While Mark was finishing up the paperwork and requirements in Ukraine, Josiah decided life was too boring.  He made an unscheduled stop at the hospital to have his appendix removed.  We, once again, praise God for our proactive pediatrician.  We’re also very thankful that his appendix didn’t burst!

In September, we welcomed home Mark and Silas and began our journey as a family of eleven by attending our church’s annual family camp.  We started school pretty soon after and took a break here and there to go to the zoo and talk like a pirate.

October was another “quiet” month and we enjoyed settling in to school, learning to read and being a family.

November was just the opposite of October!  We had my birthday (one year closer to 40).  Our first NF walk went off without a problem and lots of smiles and laughter.  All total, we raised over $7000 for NF Research!  Liam started wearing glasses this month. We celebrated Thanksgiving with Papa and Grandmere.  Mark and I learned that God had chosen to give us a new addition.

December brought joys, trials, and sadness.  We found out early in the month that we were expecting twins but the babies, sadly, did not make it (“not viable” in medical terms).  This has been one of the hardest miscarriages (mentally, not physically) yet and I learned later in the month that twin pregnancy losses can sometimes feel harder, even if they are early miscarriages.  We rejoiced over Emmie’s spinal fusion successes and UGGHH continuing to behave.  We also learned that she has another plexiform in her hip muscle as well as scoliosis.  Recently, we have noticed a very small plexiform on her armpit.  Also mixed in with all of our news, we mourned the loss of my uncle too close to Christmas and rejoiced in the time we knew him here on earth. Despite the hardships, trials and struggles this month, we have been able to fully rejoice in our Savior’s birth.  We are continually reminded that we are not facing these struggles alone because He is always with us.  We continue to feel God’s guiding, gentle, and loving hand leading, comforting and sometimes carrying us through.

Looking ahead…we have some fun trips planned for the kids and new experiences for us all (I’m going to be homeschooling a high schooler ya’ll!)!  We can not wait to see what the Lord does in and through us this coming year.  Yes, with new diagnoses, we are looking at another year of uncertainties and deductibles met too soon as well as meeting new specialists…but we know the Lord has carried us this far and we will continue to walk where He leads.  Two things are certain, we’ll continue to raise awareness of NF and also advocate for children who need a home.

**I know that I started out with links and continued on to what I had actually posted.  I’m doing my best to get everything up to date.  Our months have been very busy since August!  For now, we have an easy way to read up on our fun and crazy year.**

 

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.

georgiagroup

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!

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.

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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

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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.