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.