What a day Emmie had on Friday!  A super hero’s work is never done and she proved that.

First of all, we noticed on Monday, not even two weeks post-surgery, that her new brace (she had been wearing it about a week) was breaking again at the same place the other two broke.  I emailed her neurosurgeon to let them know and then also scheduled an appointment with orthotics for Friday.  Emmie already had a post-op appointment with the neurosurgeon.  Why not add another?

Meanwhile, I heard back from Dr. C, the neurosurgeon, and they wanted her to have an x-ray on Friday before her appointment.  We were told by his staff this was to see if her spine was stable enough to go without the brace.  However, that wasn’t entirely true.  I’ll get to that.

Zoe had an awards night with American Heritage Girls on Thursday night so we opted for an early leave time on Friday.  We left our house at 6.  In the morning.  Dropped the kids off at Ge and Granddaddy’s by 9 and headed to Emmie’s appointments.  

First up was x-ray.  We have yet to figure out how to explain to a baby that she isn’t get an owie when the x-rays are at the same place as the MRIs.  One day we’ll just be able to tell her and she’ll believe us.

After that was done, we headed to Dr. C’s office.  Dr. C was very happy with how she was doing post-op.  He showed us the x-rays from March and then from today and we could see a bit of improvement.  Obviously, the spine was not the shape we wanted it to be and I don’t believe Dr. C was expecting it to be.  He is using the x-ray from today as a baseline.  She’ll have another done in three to six months (We’ll try and coordinate it with her MRI schedule).  At that time, we have three options:
1.  Spine has shown significant improvement in bend-This would mean Emmie won a trial period without the brace.
2.  Spine has shown no improvement or worsening-This would mean that the brace is working and she’ll need to continue wearing it.
3.  Spinal bend has worsened-We’re not sure in detail what this would mean and honestly I don’t really want to know but he repeatedly said “invasive action.”

I would much prefer number 1 or even number 2 to number 3.

He looked at her broken brace and shrugged perplexed.  He said he has never had a child break that kind of brace.  Ever.  One of Emmie’s super powers have been revealed.

We also discussed her eye.  Her right eye is still a bit droopy and she doesn’t open it too wide.  We thought, at first, that it could just be swelling but after two weeks it has not gone down and should have shown some improvement.  Before her appointment, I scheduled an appointment for her to see her ophthalmologist to rule out nerve damage.  Dr. C agreed with that and expressed willingness to cooperate with her eye doctor should they need information from him.

With that, we hopefully, said good bye to Dr. C for a good long while.  Dr. W will be our go to neuro guy (he is the neurologist if I haven’t lost you with all these doctors yet).

A quick bite to lunch, a power nap, and off to the bat cave to modify her brace.

I had my qualms. I just knew that the orthotics would shake their  heads and either give us another one just like what she had.  Instead, she was just like M in James Bond.  She looked at, discussed, deduced what the problem could be.  After spending awhile with us, she headed to her secret lab to work on the problem.

We waited.

Eye pokes help pass the time.

And waited.

And waited some more.

Genius takes time people.

Finally M returned (okay her real initial is L but we’re going with a super hero/James Bond theme here, bear with me) and brought us the new and improved brace.

She added a front hard plastic piece and two “buttons” or “screws” on the side.
If she breaks this thing, I may lose it.  

See, I get the fun and silly posts on Facebook about pretending to be a slug and all to raise awareness for Breast Cancer even though Breast Cancer Awareness Month is in October and I’m quite certain it is very well known.  I totally agree that we need to spread awareness for it and we have dear friends who have been directly effected by it but I also know that NF is very prevalent and doesn’t get as much publicity.  So, this is my publicity for it.  Minus the slug posts.

Wow, that was a noodle.  Sorry.

Back to what I was saying.  This month is Neurofibromatosis Awareness Month.  The theme Children’s Tumor Foundation has chosen is, “I Know a Fighter.”  Each day this month, I’ve posted an NF fact and shared a short bio as well as a picture of some pretty awesome and amazing and beautiful NF fighters.  You can go check it out now.  Don’t worry.  This post will be here when you get back.

May 17th is National Neurofibromatosis Awareness Day.  That’s seven days away.  I would love it if you, my dear friends and family would share our NF part of the blog.  Or our Facebook page.  Or even Super Ems picture (found below)!

Please remember to share a link to our blog or to Children’s Tumor Foundation or both when you share!