Saturday, September 5, 2015

not impossible...

hey friends (:

I really need to sit down once a month and reflect on this sweet journey with Evie and the rest of our crazy crew. We have had a memorable summer, one that will go down in the books. I have contemplated making "I survived the summer of 2015" t-shirts... if there's enough interest I might just do it!! (:

Good stuff first -
Evie and I got to travel to North Carolina this past February to kick off the Quintiles Global Leadership Meeting. Basically, the leadership of a big research company was meeting to assess where they're at, and where they want to go (or something like that). We got to kick off their meeting sharing Evie's story, encouraging them to keep up the good research. How lucky am I!? I get to personally thank the groups of individuals who are pouring their hearts and work into research trials by sharing with them the miraculous result of Evie's trial. So grateful to be there.

In June we traveled as a family to Washington DC, again to share Evie's story at a conference for youth and their families who are a part of a program called iCAN research. As these young kiddos are heading into the fields of medicine we got to again encourage them to do good work because there are actual people benefiting from what they are doing. God's workmanship just shines through Evie's life, and it's an amazing thing to share.

Hard stuff second -
This past spring we met with Evie's neurosurgeon and plastic surgeon and it was decided that she needed another skull decompression surgery, again moving her forehead forward to make more space for her brain. She had been complaining about headaches and was just plain irritable. In April we scheduled this surgery for August 6th. Giving me four long months to pray, cry, pray, worry, pray, cry, pray, and cry some more.

Following that decision Evie's orthopedic surgeon found a stress fracture in her right femur that was a ticking time bomb waiting to break all the way through. We made the decision to put a rod in her femur before it broke and we were left picking up the pieces. Wow, it's hard to put your kid through something like that before the break has actually happened. She was in a lot of pain afterward, and it took her nearly the whole summer to walk again. It was hard on our hearts. It took a lot of frustration and tears to finally weight bear and take steps.

God handed me a gift the week before Evie's skull decompression and she started walking more confidently. She went from wheelchair to crutches to finally walking independently. We are still carrying her quite a bit, but it is a relief not to have her crawling around our home anymore.

We are just about a month out from Evie's last surgery. Her surgeons made cuts in her skull similar to the first time she had surgery, but this time they put in distraction devices. She has a metal "distractor" on each side of her head with a piece that sticks out. We turned a key twice a day for a week, then once a day before the keys were removed. Each time we turned the key the distractor would spread out .5mm moving the front part of her skull forward. There is still a little metal piece sticking out and a couple of staples here and there, which come out November 12th. She also has a metal plate between her eyebrows that is pretty prominent. When these are removed her plastic surgery will smooth out all of the cuts and bumps from her three surgeries. I just can't wait to see her sweet face all smoothed out. What a gift to her. We are in a weird transition period where her old photos look odd, and so do new pictures of her because it's temporary.

July was a hard month. I was stuck. We were still in the depths of recovering from her femur rodding and anticipating another surgery... that would lead to another surgery. We haven't had any major operations since October of 2013 and I just wasn't ready. Honestly, I thought she would be running around 6 weeks after her femur rod and it just wasn't happening. Also, now that she's older she "gets it." Surgery means pain, IVs, icky medicines, finger pokes, wires, monitors, time away from her sisters, missing the fun stuff.
BUT surgery also means an intense time spent away from the things that don't matter, and time to focus on the things that do. Time to beg our Lord and Savior for the peace that only He gives. Healing for our hearts, minds and souls. Connecting with our family in a way that some people never get to experience.

We went to the Building 429 concert tonight and I got to hold Evie and sing their new song "Impossible." More specifically the lyrics proclaim "There is NO such thing as impossible!" Evie LOVES this song. She LIVES this song. I am taking this with me November 12th when I'm waiting for her swelling to go down so we can go home. When she's up in the middle of the night because it hurts. When we're sleep deprived and missing our beds. When the other two are crying because it's hard when we're gone. When the burdens of the other people in the building are breaking our hearts.

The day we left the hospital we shared the elevator with a family who was leaving the ICU without their son. We saw one of our preschool families in the lobby - their daughter has leukemia. It was such a good reminder that we are just a few of a large group of people who are struggling. What a gift to know that God loves every single person there - and he hears our prayers.

and for the pictures you have been waiting for:

Two days post-op, feeling up for some reading.
turning the keys - yep it was just as weird as it sounds!
the gift shop makes hospital stays bearable (:
these girls love each other.
ONE week post-op. Already seeing a big difference.
3 weeks post op. Giving that brain some room to grow.

be still my heart.

our last femur x-ray. healing well. 
 once you have a straight femur, you should put it to good use. Yoga, perhaps.
 end of the summer fun.
 Then this happened!!! As Evie proudly told her doctor, "I go to the Elsaesser Boarding School for Girls. In my BASEMENT." Two weeks down, so far so good.

 Building 429 concert. Worshipping God with my 4 greatest gifts.
 There's no such thing as impossible!!
Love you friends (: Two more weeks and this kid turns 6. SIX! We'll be back soon.