So it looks like Emilie will need a helmet, or what they call a cranial remolding orthosis. In October Holly and I began expressing concern to her doctors about the long narrow shape of her head. After several follow up appointments and a few trips to LA she was diagnosed with scaphocephaly (i.e. a long narrow head), which is a result of the premature fusion of the sutures in her skull. While there’s no 100% way of knowing why this happened, we believe it’s related to how rapidly her head size decreased after her vp shunt was placed. Consequently the sutures in her skull fused together (the doctors believe), leaving her with a long narrow head shape that could not be remolded by changing her sleep position or tummy-time alone.
The team of doctors we initially visited believed all her sutures had fused, leaving surgery as her only option. However, a ct scan of her skull revealed only one suture was fused. This leaves the door open for a helmet as the best non-surgical solution. Yet it takes a helmet 4-6 weeks to arrive, during which time all the sutures could fuse, bringing us back to surgery. And so, we’ve been praying. Praying that her sutures would not fuse and that the helmet would have the time it needs to correct her head shape.
Certain studies show that one’s head shape can have some bearing on brain function and ability. However, in Emilie’s case, the doctors are certain that her condition is purely cosmetic. While we do desire Emilie to have a symmetrical head shape, we are not eager to subject her to a major carniofacial surgery just to correct something cosmetic. So Holly and I are placing it in the Lord’s hands and looking to Him for divine movement in this circumstance much like every other.
Emilie is hitting her milestones. She’s begun rolling over from front to back… it actually looks more like a collapse, but I credit it to her as a rollover. She holds her head steady and she’s able to sit up more and more each day. She reaches out claiming anything within her grasp, and her favorite food isn’t actually food at all. It’s her fingers, of which she’s happy to share with anyone close enough, four saliva-soaked fingers which she gnaws on about every 5-10 minutes. One of her favorite activities is to stand up while I’m holding her hands.
Emilie strongly favors her right side, which has caused us some concern. Thus she stills sees an occupational therapist once a week. She opens and uses her left hand if compelled, but will quickly revert back to the right side when given the opportunity.
The OT has recommended that we restrict her right hand, forcing her to use her left. It’s as though she recognizes she has a left hand, but simply has no interest in it.
As you can imagine, Emilie’s need for a helmet and her use of her left hand are at the top of our prayer list. We know that God has brought us this far, and we are confidant that whatever challenges we may face ahead God has already “thought that thing out and thought that thing through.”
Emilie Grace 
Prayers sent out for your lovely daughter. All my love to you and the family. –AC
praying, in faith, that emilie will begin using her left hand more adequately and that her head structure will take the form her heavenly Father intends for her. we believe it is so. what ta lovely pic of her, btw 🙂
My prayers are with you! She’s beautiful! Let’s trust in God that He will continue to do all things well!
I am elated to hear about the remarkable progress that your gorgeous little princess is making! My family and I will continue to intercede to God in her favor so that these present concerns, and any other concerns you may have to be addressed according to His will and merciful grace. May His healing hands remain on beautiful Emilie daily, and may His loving guidance, wisdom, touch, and Holy Spirit surround your family now and always. Lots of love from the S-Team.
Luce
Lhorraine and I have it down: her left side and helmet are on our prayer list.
MIKE
Dear Seth and Holly, Emilie Grace is so beautiful! I will certainly be praying along with you and trusting our Heavenly Father for His outcome for He is in control of every detail of our lives.
Love you much,
Mom Kelly
Greetings Seth & Holly,
Thanks for sharing the update and BEAUTIFUL photos of Emilie. It blesses me to hear of her progress. That is a testimony and praise report indeed! I will keep all of you in my prayers, believing that the Lord will continue to keep His hands on Emilie, guiding her divinely to use her left hand as much as the right as well as shaping her in excellence from head to toe.
From the pictures I don’t see anything but her beauty and adorable cuteness. Besides, aren’t most babies heads disproportionate because of rapid brain growth during the first two years? I still have to remind myself to use my left, especially when I’m travelling and pulling & lifting my luggage 🙂
Peace to you!
Camille
haha! Thanks so much for the encouragement… and the perspective! God is faithful!
I was inspired today to look at the progress of your miracle child Emiliegrace. As I looked at her beautiful smile of health from where the Living God brought her from my heart was so touched because we that are people of faith spent time before the Living God on behalf of you and your family. The outcome is amazing. We all prayed to an amazing Living God.who’s grace is sufficient for us His children. Your daughter is a gift to the world no matter what, just as her parents are. The Living God is up to something. Time will reveal it according to His word and His will. We will not allow Satan to steal our (FAITH). You are blessed with the right child for the right reasons at the right time. The Living God is making it right and tight in His sight.
.
Amen!
Johnny and I are praying for little Emilie!!! Thanks for keeping us updated. She looks just like you both….she’s a little cutiepie! God is good!
Tanya thanks so much for your prayers! I hear you guys are expecting a little one too. Congrats! You two didn’t waist any time 😉
This post is very interesting, but is hard to find in google.
I found it on 11 spot. You can reach google top10 easily using one handy wordpress
plugin and increase targeted traffic many times. Just search in google for:
Aemikimi’s Rank Plugin