Super Heroes Unite!

Posted on August 10, 2018 by Abbie

We were so excited when we found out that Atlanta would be the host city for the 2018 NF Forum put on by Children’s Tumor Foundation (CTF). That’s practically in our backyard (well, sort of). Of course, we all had to come. They put a call out for posters to show our NF Heroes journey and Ace and I jumped in brainstorming, sketching, discussing and drawing (all Ace on that last one). Emmie was thrilled to wear her cape and show off for everyone. We took up two tables for the welcome dinner!
CTF loves on our kids…all of our kids!
Saturday, Mark and I sat in on meetings and learned a bit more about the research that CTF has helped fund. We also learned about new treatments and patient initiatives that we are looking forward to getting involved in in the future. Tobin…well, he made friends (several people tried to take off with him and get all his cuddles), ate furniture and in general entertained everyone he saw. After the conference on Saturday, we ate at The Varsity because…well, because we were in Atlanta of course! I couldn’t resist getting some pictures of our kiddos all matching in their CTF shirts…especially with the Olympic Torch in the background.

Mark’s parents came over for the conference. Papa echoed our thoughts about CTF. The organization is top notch. They have worked to become leaders in research into NF. Not only that but their innovative way of going through clinical trials has had broad reaches for other disorders and diseases. We are proud to support Children’s Tumor Foundation and the work they do to help our Super Ems!

Dance My Child

Posted on July 12, 2018 by Abbie

Emmie had a parent observation class in April. We love seeing her light up as she dances. She doesn’t know that it’s a therapy. She doesn’t realize that it’s to help her back not bend or give her strength to grow. All she knows is that it’s forty-five minutes of visiting with friends and dancing. And that’s good enough for her.

Work and Play

Posted on April 8, 2018 by Abbie

We took Emmie to Shriner’s Hospital in December to get a second opinion on her scoliosis. He confirmed that we were doing everything we needed to do for her right now. He stated that she was not a candidate for casting because she was at the tail end of age and her spinal fusion in her neck. So, we’re not sure what we the next step will be if her back continues to worsen.

As an aside, Shriner’s is a great facility and treated Emmie extra special. We are so blessed to have two amazing hospitals within a day’s drive of us.

After her appointment, we went for some little play at the park in Greenville. It was cold but so beautiful.

A great place to run off some energy.

Fun footbridge over the falls!

On the way home, we passed by the Promised Land!

The Good, The Bad, The Ugly

Posted on December 15, 2017 by Abbie

Emmie had her appointment today with Shriner’s Hospital for a second opinion. First of all, I have to say that they definitely lived up to their reputation. They were great with Emmie and open and honest with all of us.

Here’s the good, the bad, and the ugly of what we learned.

The Good

The orthopedic doctor fully agreed with the current treatment for Emmie’s scoliosis and the amount of time between appointments. We don’t want to expose her to any more radiation than is absolutely necessary and there really isn’t much that would change in her course of treatment. It was great to hear a doctor affirm that she is getting just what she needs at CHOA.

The Bad

We learned today that Emmie is not a good candidate for casting. In fact,the orthopedic doctor stated simply that this can not happen because of her spinal fusion in her cervical spine. Casting requires traction which would tax the fusion and would cause severe nerve damage. This is a bad because casting has been found to help greatly in idiopathic scoliosis. We also got confirmation that because Emmie has NF, her scoliosis is not considered idiopathic. The research we have done has shown that casting for progressive scoliosis can lead to a great improvement and delay spinal surgery by a lot. So,no casting removes the only other treatment for progressive scoliosis.

The Ugly

That leads us to “the ugly.” He basically told us what no one else has…that we are going to be bracing and bracing and bracing until the spine gets bad enough to need surgical intervention (which we hope is years away). We knew she would need surgery but until we heard a doctor say that, then we could just be in denial. As I’ve said many times, NF bones are very weird and do not act like normal spines even “normal” scoliosis spines. Add to that Emmie’s spine history…well, we know the spine isn’t going to correct. We also know it will get worse. It’s just a matter of getting her as close to maturity as possible before we have to do surgical intervention. So, the brace, as we know, is there to slow the progression of the curve as much as possible.

Like I said, we were grateful for the open honesty the doctor provided and again, the affirmation that she is getting the best care needed.

We’re here again…the ol’ Wait and Watch routine. We’re adding in prayer as well. Please join with us in praying that the spine does not progress fast and that we can avoid surgery for years to come. I hate she has to live in a brace. She’s worn a brace most of her life. It’s what she knows and it barely phases her. But it is so hard to watch her deal with these crazy restrictions and challenges that many three year olds never have to deal with. Please continue to pray she can continue tolerating the brace with her dynamite warrior attitude as she has so far! Please pray for strength as we seek to glorify God through all that our super hero encounters.

As a treat, we bundled up and visited beautiful Falls Park at the Reedy in downtown Greenville.

Curve-ball

Posted on December 12, 2017 by Abbie

It’s about a time for an update. Emmie had a five month check up for her scoliosis in November. We met with the nurse practitioner at her orthopedic doctor’s office.

The Good New: Her curve has increased to 29 degrees but is still considered stable since it is still under a degree a month (last measurement was 27 degrees in June). Basically, we can say the brace is slowing down the curve progression.

The Bad News: Her spine is leaning significantly more to the left than it was in June. This is obviously not a good thing. The nurse practitioner stated that Emmie would need to meet with her orthopedic doctor for the next check. If the x-ray shows more leaning, then we’ll have to look at a different intervention. We set her next appointment for five months from November.

A week later, Mark and I were talking. We both realize that NF kids have crazy, weird bones that tend to do their own thing. We reflected back to Emmie’s second MRI and how her cervical kyphosis came up but was dismissed and only six months later it went from a “possible positioning” to “severe cervical kyphosis.” We were blindsided and will always wonder if the progression were caught sooner would we have been able to delay the halo even more.

Because of all of that and after consulting our pediatrician, we decided to seek out a second opinion. We’ll be meeting with a doctor at Shriner’s Hospital this month just to make sure we don’t need to be a bit more aggressive in our treatment.

Like I said earlier, NF bones do their own thing and don’t like to follow standard early onset scoliosis protocol (if there is such a thing). We know she’ll need stronger interventions for this part of NF. While we would love to wait as long as possible for those interventions, we know if she needs it now, then so be it. God has shown us over and over again that He is in control of Emmie’s life (well,all of us,but we can see it more clearly with Emmie). We trust Him to lead us and the doctors we are meeting with.

NF Walk 2017

Posted on November 2, 2017 by Abbie

With this pregnancy and just life happening all around, I haven’t posted much about our NF Walk. But, regardless, it happened and we all had a blast. Emmie was so excited about the walk that she woke up at 2:30 the morning of, started to get dressed and cried that she was ready to go to the walk when Mark put her back to bed. Ceili Rain continued working on her cake decorating badge by helping with the cake and cupcakes. Ignore my big ol’ pregnancy belly and notice the cool bad/good guys in the background. These guys were part of the 501st Legion-Georgia Garrison and volunteered their time to dress up in this hot costumes and make all of our kiddos super happy! They were amazing and we were so excited to have them come…some of them drove up from three hours away to spend the day with us.

Emmie was shy at first and would have nothing to do with them. She’s more of a clone wars-Ahsoka fan. But after a while they were able to get her close enough to get a good picture. During the walk, Mark was holding her when they walked passed the storm troopers and she lifted her head up and shot a quiet “pew” at them and grinned.

Even though the walk is over, we will happily accept donations to our team. Any and all donations go to Children’s Tumor Foundation which funds research to end neurofibromatosis! Our team goal is $2500. We’re over a third of the way there and would love to meet our goal by the end of the year.

Super Sibling Sidekicks

Posted on September 12, 2017 by Abbie

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

Posted on August 13, 2017 by Abbie

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

Posted on June 11, 2017 by Abbie

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!

Posted on May 25, 2017 by Abbie

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

Just a Bunch of Characters

Musings of everyday life in a house full of Characters.

Category Archives: Neurofibromatosis