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.
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!
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.
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.
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.
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).
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?
Great News: Plexiform neurofibromas in her neck are stable!!! There is no signs of any issues in her windpipe or spinal cord.
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.
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!
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!
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.
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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