In 25 days, Emmie will have a CT scan.  After the CT scan, Dr. Chern will make the decision.  If her bones are grafting to the fusion, then she’ll be taken to the special procedures room and the halo will be removed.  If they aren’t grafting, she’ll wear the halo a little longer and then we’ll re-evaluate.

In 25 days, we might be able to cradle our daughter close to us again.  To feel her cheek against us.  I still can’t imagine what that will be like.

She’ll wear her pre-halo brace for a little while and clothes.  Clothes!  Dresses, shirts and pretty much anything cute I can squeeze over that brace.

Please pray for us and Emmie.  Pray that the bones are grafting.  Pray that the bones are strong enough to support her head.  Pray that the surgery will do what it should have done…made her neck straight.  Pray that we can trust God and not “mother hen” her until she is annoyed with us.

So, here we go.  Counting down with a real live date on the calendar.  We have our counting chain made and are ready to start ripping those rings off!

February 17th is the day.  At that point, Emmie will have been in the halo for 6 months and will be 21 months old.

We’ll be updating the Facebook page throughout the procedure and the days following, so if you are on Facebook, that will be an easy way to keep up with our prayer requests.

We were so blessed, within an hour of scheduling surgery, our friends stepped up to provide childcare.   This is a big blessing so that all of our family can be there.  By the next day, I was given a list of names of even more amazing “framily” (because really, people who rearrange schedules and take care of your crew are more than just friends) that are bringing meals the week of surgery.

Everything is coming together and we see God’s loving hand letting us know He is here and He is watching over us.

Here are some specifics to pray for:

1.  For Emmie’s neurosurgeons and all the medical staff that are going to be involved.  This is not a common procedure on a child under two.
2. Peace for all of us.  February 17th is going to be an extremely long day (and possibly night).
3. For the kids to enjoy their time with their friends.

So, February 17th.  The battle with kyphosis and neurofibromatosis has been set.  We’re counting down the days and enjoying each moment we get.

Well, it’s been five months, an ER trip and multiple x-rays.  This is the magical time that we have been waiting on since Emmie fell in August. Originally, Emmie was supposed to go in on January 8th, but our neurosurgeon, Dr. C needed to see the CT scan first.  Fast forward a few weeks and then there we were.

Thursday Emmie had a CT scan under general anesthesia.  After she was done, we met up with Emmie’s neurologist, Dr. W.   Then Friday, we were back at CHOA to meet with Dr. C.

Emmie did wonderful on Thursday.  Naturally, she cried as soon as we entered her room in Day Surgery but she soon calmed down.  The nurses are starting to recognize us too.   This was after the “happy juice.”  That and whatever anesthesia they used made her think she was The Flash.  After she woke up, she tried to get up out of our arms.  When we were discharged and walking down the lobby to the cafeteria, she tried to run.  She didn’t run before the super meds…but yet she thought she could on unsteady legs.  We got a kick out of her trying to be so independent.

We’re always a bit nervous on scan days because of the results we have gotten in the past.  This time, was not as painful.  From what Dr. W could tell, the plexiform (tumor) is staying in her neck.  Because she didn’t cry out in pain when we press on the plexiform, he also felt it was a good sign.  She smiled for him and allowed him to do a neurological exam.  She is still on track for being pretty much awesome.   We know the plexiform has grown from what we can feel but the specifics can not be seen except on an MRI.  Once the surgery is done and halo is off, she’ll be having an MRI to get a better look at the plexiform.

Little bit was super exhausted when we left CHOA.  When Emmie is anxious, she wants to hold our hands especially when she sleeps.

Friday was very hard.  We knew that the detailed appointment was coming.  We just weren’t prepared for the reality to settle in with all the details.  Now it’s real.  Now it’s game time.  We were reminded once again that Emmie’s spine at this age is not the norm for the medical community.  We are so grateful that Dr. C has been reaching out to other neurosurgeons across the country to make sure he is doing the best thing for her.

Before I dive into surgery details, I wanted to mention something.  Several people have assumed that the halo is the fix.  It’s not.  That’s easy to think because most of the time when an adult or older child has a halo, it is because they have a break.  Just always keep in mind that Emmie is different.  The halo brace was placed to keep her spine stable until her bones were strong enough to take a surgery to them.  The doctors did not want to keep her in a halo much more than five months without trying to correct the spine (halos fail after a certain amount of time and constantly have to be monitored.  Also, she has grown quite a bit since August).

This was the curve in August using MRI (the details on the spine are not as clear as a CT) and before the halo traction.

This is the CT scan from Thursday, the 21st.

There has been some improvement from the scan in August but it has stayed completely the same since after traction.  The good news is that the halo has and is continuing to keep her spine stable.

She’ll have surgery sometime in February, probably toward the middle of the month.  She’ll be in the hospital for 7 to 10 days.  However, Dr. C estimated 3 to 4 days for the plexiform re-section in April and she was only there 24 hours.  We know we’ll be there longer than 24 hours but would be super excited if it was less than 10 days.   After surgery, she’ll remain in the halo for at least six weeks to continue to allow her spine to strengthen.  Then, the halo will come off and they’ll monitor her really closely for awhile.  If there is any indication that the spine is beginning to bend again, she’ll be put back in the halo.

Surgery is going to be long.  A lot of decisions they make will be when they start the procedure.  Right now the surgery consists of three parts:

1.  They’ll remove more of the plexiform to get to the spine.
2. Anterior-They’ll go in to the front and remove and replace two of the vertebrae (the two that are shaped like triangles but supposed to be rectangles). The replacements will have to be custom made for Emmie because they don’t make them small enough for her.
3. Posterior-To provide more stability, they’ll put in rods in the back of her neck and will fasten those with either pins or wires depending on the bone thickness.

There it is.  The condensed version of what is going to go down in the coming months.

Dr. C thinks the world of Emmie and we are trusting God to provide healing for our amazing super hero.  Right now, I don’t know what to think.  My brain is in planning mode, but experience tells me to enjoy each moment with our family right now.  Now is when we’re reminded that we aren’t in control and that each moment is precious.

We’ve put together some shirts to go along with Emmie’s fight.  This campaign closes on February 1st.  Check them out here.

Our life looks a bit schizophrenic, I supposed.  One minute we are in full “normal” school, church, activity mode.  The next we have NF things.  Then we turn around to work on adoption things.  It’s pretty busy around here and we are getting good at switching gears on a dime.

Alas, I realize I have yet to update the blog on on all the NF/Adoption goings on.  So, here it goes:

Adoption Update:

In less than a week, Mark and I will drop kids and head to the airport to fly over the “big pond” and arrive in a new and very exciting adventure.  Our first trip to Y the Brave’s birth country is coming up. We won’t be bringing him home (as much as we would love to) just yet.  This appointment is for our official referral.  All total, we’ll spend about a week in country.

The Lord has provided for our funds for this trip with a grant and several donations and all of our hardwork (and friends and family too) with fundraisers.  We’ll have two more trips coming up and total need around $8000 to finish out the adoption overseas.  That will help pay for our travel, stay and other expenses in country (Y the Brave’s new paperwork, etc).  Right now, we were blessed with a covenant loan (no-interest loan) through LifeSong for Orphans for some of that remaining $8000.  We would love to not have to use any of that loan and are praying the Lord provides just as He has throughout this whole process.

My heart ya’ll, I can not wait and don’t think I will ever forget the look on Y’s face when we walk in to his school.  I don’t know how in the world I will keep from grabbing him up and smooching him (aside from the fact that it would totally embarrass him in front of everyone…I guess I will restrain myself).

Halo/NF

Our ER trip. Emmie fell and dislodged two of the pins in the front. Thankfully, Dr. C was able to hand tighten them in the ER (with some heavy duty pain meds to calm Emmie).

Emmie has had quite an adventure.  In the past three months, we have been to the ER once, pediatrician a couple of times, fallen numerous times, seen the orthotist a few times and now had a complete halo/pin site re-positioning.

ER trip under our belts and refueling for home.

This was after a super painful pin tightening visit and a dose of tylenol. Her strength amazes me.

She went in Tuesday and had the re-poisitioning done.  Her falls have caused her halo to get wonky and the pins to push in too far (not in to her skull but still too far).  Her x-ray on Friday, the 30th, showed some other issues too.  The pins were irritating the skin a bit and he wanted to put them in new sites to let her skin heal.  Dr. C knows we are in the process of adopting and wanted to get the procedure done before we left town.  We were glad he did.  She has been getting increasingly upset and agitated with pin cleanings and just in general.  When she reaches up to her head or the back of her neck and starts crying, we know she is having problems with it.

Dr. C, neurosurgeon extraordinaire decided that she needed to be put to sleep to get everything centered and set again.  Dr. C, unfortunately, was not going to be in town this week, so Dr. R., yet another amazing neurosurgeon and the one who originally placed the halo, did the procedure along with Super R the Orthotist.

Power nap before the morning activities at the hospital.

She did wonderful.  Even though she had to wait an extra two hours because of an emergency, Emmie experienced no problems.  We were able to go home in the evening and every one has been glad to be here.  So far, over-the-counter pain meds are working too!  She’s a tough one and we are so proud of her and how well she is doing.  

This was a daddy trip.  She was only happy in Daddy’s arms. Just got the versed.  That is a magical medicine.  Unfortunately, the two hour wait meant that it had worn off somewhat by the time she went back and she was quite distraught at having to leave us.  That was the hardest OR release we have had yet. All done.  Yes, she does look taller.  Her neck was re-positioned and gained her a bit more inches.

And the day after.  I got her all decorated up and she waited patiently while I did it too!

So, now we have our first OR outpatient done and third surgery.  She really is an amazing little girl.  I would be curled up in bed for a week after this one surgery but no, she is ready to go and explore.  And let’s not discuss the pin tightening that requires excess amounts of chocolate on my part…and after a good cry, she is ready to go!

Since we are three months in to halo land, we have about two more months now until surgery.  I’m guessing our next visit with Dr. C in December, we’ll start really discussing what is going to happen and the whens.

I’m sure everyone is wondering what the plan is now.  Our immediate plan includes five months in the halo or until Emmie is between 20 and 21 months.  She’ll then have surgery to place what Dr. C calls a “straw’ between either two or four vertebrae in the front of her spine.  They may or may not fuse the spine in the back for added stability.  They will go in to the front to do the work because that is where the bend is.

This is all up in the air but all the neurosurgeons agree that they do not want her in a halo past five months before she has surgery.  Once surgery is done, she’ll stay in a halo for about three months before they remove it.  Then three months after that, if she is stable, we are done with this part of NF.

Yep.  I said this part.  Remember, I said this was a marathon.  Unfortunately, NF is a progressive disorder.  But it is also unpredictable.  It is our understanding that we’ll be addressing the issue of plexiform growth after we get the spine situated and stable.  Of course, since all cases are unique and different, those plans may change too.

All we can do for now is enjoy our “new normal” and hang on and pray.  We may not know what in the world is coming at us next, but we do take great comfort that God knows it all and knew it all before we ever started this journey.