Many may have caught a few weeks ago that we now have a date for Bethany’s Craniofacial surgery in Dallas. She will go into surgery the morning of November 2nd. We don’t know specifically what time yet, or in fact what hospital we will be at, but should know those details soon. What we do know is that we are looking at around a 4 hour procedure time, that we will be released to ICU for about 3 days following that, and that we are very comfortable with her surgical team and the hospitals and facilities.

First the not so fun stuff- the surgery. To clarify, she is having a cosmetic surgery procedure on her skull, not brain surgery. Her premature fusing of her suture lines in her skull has caused the plates to both stop growing on one side, and grow atypical on the other. The results are seen in the uneven balance of her eye socket size and placement, the slight tip to the left of her nose, and an asymmetrical forehead shape. All of these things will be corrected by the surgical team using material similar to dissolving sutures in the shape of plates and screws that will be attached to her current bone. By separating different plates an securing them with these screws, removing some bone, then replacing and augmenting other bone with this material, the team will construct a more balanced facial and head structure that will allow her head and brain to grow in a more healthy manner. To do this, they will make a zig-zag incision from one ear to the other. Yep. That is all the tough parts. You can see more about the procedure and see some photos here. (note: due to advances in process and the use of the plates and screws, Bethany will likely never see a helmet.)

Now the good news! 1. Bethany does not seem to be having any further seizures. that means that her medication is working as it is supposed to. 2. Since moving “full time” to Texas to undergo this adventure, we have been able to enroll Bethany in the Texas healthcare system, and we have gained access not only to the phenomenal doctors and facilities like Children’s Medical Center and Children’s Medical City Dallas, but we have also begun working with an amazing team of Occupational and Physical Therapists. Bethany has about 6 appointments a month with them, and just completed a full 2 hour analysis last week.

She is meeting all of the expected benchmarks as far as social and neurological developmental stages, and seems to only be lagging by about 2 months in physical development, specifically her muscular tone in her stomach area (core) and left arm and shoulder. Considering that her left shoulder was impacted during delivery, and that her inability to push herself up on that arm to a sitting position is likely causing her lack of core development, both of those two issues should respond well to active physical therapy. She is not yet crawling, however she can stand and balance on her own on daddy’s hand… (yes, you heard that right…) in fact, that is one of the things building her core muscles! All in all, she is in great shape both physically and mentally to be going into this surgery. She is giggling in my lap as I type this.

So now we wait. We have just less than 3 more weeks before the surgery. We will go to Dallas the week prior for a final consult appointment with the Neuro team and for Amy and I to donate blood. Since we haven’t had her typed yet, we don’t know which one of us is the matched donor, so we’re saving her a needle poke by each taking one ourselves. Amy’s parents will be arriving around that time to help with transporting Emily and Dillon to and from school the week of the surgery, though we will all be at the hospital together during the actual procedure. They will probably come home with Grandma and Grandpa that night or the next day.

We appreciate your continued prayers. We have been blanketed with such a great peace about this whole process that we know you must be praying. We will continue to trust God for our expected outcome!

“You will keep in perfect peace him whose mind is steadfast, because he trusts in you.” -Isa 26:3