First, there’s this (which I sang for days coming up to Emmie’s surgery and days after).

Today is Neurofibromatosis Awareness Day!

It’s almost been a year of living with NF.  A year ago today, I was at home cuddling up and getting to know this little one who had shared my body for over nine months.  I knew every inch of her by this time last year.  I knew her tiny little fingers.  I knew her sweet cries of hunger.  I knew her grunts and her toes.  Just six weeks later, we got to know more about how God had made her special.

A year ago on June 29th, I’ll never forget.  Casually getting on to Google and researching the funny names of those little spots I had started to notice on her body.  That was a year ago.  But it seems like yesterday.

I’ve heard several special needs moms who have talked about holding their breath or trying to remember to breathe.  Well, this past year has been a lot of breath holding and just trying to figure out how to breath.  A lot.

First MRI, and Mark and I felt like we were forcing ourselves to breath while she was gone but knowing we took in God’s sweet air when she was returned.  MRI report.  “It’s really close to her spine.”  “No compression yet.”  “We need a better view.”  Exhale.

Second MRI.  More breath holding.  And then the report.  “No compression confirmed.”  “We’ll monitor.”  “Oh the kyphosis could just be positioning.”  “Watch and wait.”  Exhale.

Third MRI.  More breath holding.  We learned that it doesn’t get easier.  Especially when your nine month old is burying her face in your chest while they try desperately to get a good vein.  And then the report.  “Kyphosis is bad.”  “We’ll have to do more.” “Surgery.”

That last time took longer for us to exhale.  Several times I had to remind myself to just breath.  With each exhale a prayer went up to our God.  I remember Mark one evening, too overcome with tears to pray and all I could think was “the Holy Spirit intervenes when we can’t.”

While we have had a lot of times where we had to remember to breathe, I would say more often than not we have enjoyed the sweet, sweet gift of our baby.  Soaking in every bit of what we know all too well is fleeting babyhood.  Sibling hugs, first smiles, first laughs, bouncing to music, joy in animals, sleepless nights of baby cuddles, splashing in the bath, soaking in the ocean, the sun, clapping, blowing kisses.

Today, I asked Emmie if she was ready for mommy’s milk.  She stopped what she was doing and wanted me to hold her immediately and she reached for our spot.  She has done this for the past twelve months without fail.  I’ve rocked and nursed and cuddled our beautiful girl.  It’s my prayer chair too, I guess.   As I rocked and nursed and cuddled and prayed.  Tears at times.  Smiles and joy at others.  Always lifting up our gift to the Lord.  We would remember others who were walking a similar journey or one even harder.

Walking this year has taught us so much.  We know now more than ever that each our children has been entrusted to us to raise for God’s glory.   We’ve realized that we have no control over our children but we have rested quite peacefully in knowing who is in control.  Trusting our Savior with our child, really all of our children, daily.  We know that He knows the future for them all.

I rejoice in my Lord that not one tear, not one laughter has been overlooked by our Lord.  That He knows each breath she takes and each one we hold as we await the next report or the next step.

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.