Monday, August 9, 2010

a beautiful head...

Hi Friends! We're still here!... recovering from Evie's illness, and trying to enjoy the outdoors in spite of the HEAT! I finally uploaded all of my cell phone pictures onto the computer... so here is my best attempt to give you a progression of Evie's beautiful head (:

January 2010... no concerns.
February 2010... beginning of the bulging soft spot
March 2010... soft spot continues to bulge, head starts growing more upward, less round...
still March... (just a cute pic!)
April 2010... you can see how her forehead is growing backward instead of everything growing equally around.
May 2010... bulging soft spot very obvious. Much more concern about pressure in the brain...

July 13, 2010... three days before surgery. I took a picture with her hair wet so you can really see her head...
side view...
July 16, 2010... the morning of surgery
a few hours later! our first post-op photos. you can already tell the difference in her eyes, they brought her forehead forward a full centimeter...
her fresh scar a few days after surgery...
July 23... one week after surgery! you can see the difference in the shape of her head, although it is still very swollen...
July 29th... swelling continues to go down
August 1st, scar is healing, hair is growing, and she's holding her own bottle! you go Eve!

I haven't taken any photos in the past few days, but will do soon (: Just wanted to get caught up when I had a minute! Health wise, Evie had her two post-op appointments last Friday, with the plastic surgeon and neurosurgeon and they both thought she looked fantastic. Today, she had her full set of skeletal x-rays for her 3 month clinical trial check, and I thought they looked amazing compared to previous ones I have seen.
Most importantly, she has been vomit-free for 3 whole days... and has gained all of her weight back! She was over 12lbs before surgery, got down to 11lb5oz last week, and was back up to 12lb 3oz today at the pediatrician! I am blown away by her ability to bounce back, and humbled by the results of prayer in her life.
I talked to Dr. Lutz today about her prognosis... specifically are we out of the "life threatening" range of complications. If you remember, there is a 50% morbity rate for children with infantile hypophosphatasia and seizures by 18 months of age. He said that Enobia (the clinical trial drug company) was very leary of the severity of her condition with her seizures when the trial started last year, but he thinks that with her continual improvement and growth, we are definitely out of the "life threatening" woods! Big PRAISE GOD!
LOVE YOU friends, thanks for praying for, and loving us. You rock!


  1. Lindsey!
    Evie's smile shines through each of those pictures! And her cute little tongue hangs out-so sweet!!!
    Thanks for sharing. God is so good to bring you and Evie to this day! Thank you for letting us be a part of your life through prayer and friendship!

  2. She's probably always sticking her tongue out at Enobia. They don't know what a fighter she is. :) You tell 'em, Evie!

  3. Yea, GO EVIE! You've got people everywhere cheering for you girl!

  4. She looks wonderful! Isn't it amazing to look back to the pre-surgery pictures and see what a difference it makes? Sounds like you received the most wonderful news of all yesterday regarding the clinical trial. God is good.


  5. Hi Lindsey ~
    I have been following your blog and keeping up with your sweet family. I am Sarah Besch's sister-in-law and met you, briefly, in the hospital when Luke and Julia were born and you were still pregnant with Lyla. Anyway, I just wanted you to know that I am tearing up as I look at the beautiful pictures of your sweet baby. Her progress is nothing short of a miracle from God and your faith is an awesome testimony to His greatness. Thank you for sharing and I'll keep praying that His blessings continue to pour over you and yours.
    ~ Callie Berryman

  6. I love how you are sharing each stage. It helped me to understand better what the surgery was going to do for her. What a big difference. Her smile is infectious in the best way ever.

  7. That is one beautiful child with a gorgeous head and a mesmerizing smile. You can tell she is totally fulfilled with God's spirits and blessings thanks to the love and faith of her family. May our great God continue to bless and fulfill all of you....he is always there if we ask and believe......Evie is proof !!!!!!