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.”