Friday, June 18, 2010

castor oil & chalk

~this picture was taken in the hospital waiting room yesterday~

"i have set the Lord before me always.because He is at my right hand, i will not be shaken."
psalm 16:8

i have taken castor oil, chugged it down with some orange juice. libby claire was making me so uncomfortable when i was pregnant & she was due! come out you stubborn little thing. it did the trick. she was born that very night...well, early, early the next morning. i have never taken castor oil before libs & never again. yuck!

tuesday we had an appointment with dr. matthews, cranio-facial specialist. we had all the kids in tow & everyone loved meeting dr. matthews. the boys learned some pressure points & some kind of muscle thingy. they all loved him! he affirmed our worst thoughts. he had been hopeful & thinking that her skull could grow back by itself. but upon exam he felt that there was no growth & still no protection for her brain. leaving her unsafe from normal falls, bumps or anything hitting her head. her brain exposed with little protection. we will make sure to keep her safe & up the helmet usage. he then began to go into all his thoughts on surgeries, ideas. one, she is too small to bone graft from her hip, back, pelvis area. not such a large area. he thought originally just to fill in he could but the missing piece is expansive. then he was thinking of removing the entire back of her skull & placing it in the front, but it could be resorbed & then there will be the majority of her skull missing. so on to our solution.
in march a research doctor in conneticut was messing around & discovered a mixture when mixed together, becomes pasty, then sets hard. while releasing carbon dioxide leaving the cast porous. so blood can flow through. hard as bone! he has found a prosthetic bone material-made with castor oil & chalk! KRYPTONITE is the name of it. now, we could not imagine a better name for something being placed in our pips head. she is SUPERGIRL~ he is the only doctor doing this surgery. so far there have been 8 patients in the world. one being a 3 year old boy from haiti having the same cranial defect libs has. it is new, no 1 year out results or scans. no answers for what a lifetime will be like with this in a skull. our only option. the only other is to leave her unprotected wearing a helmet permanently, until she gets big enough to do a graft.
yesterday we go checked in to CMC for a brain ultrasound. they thought of doing it while she was sedated but gave it a try first without the meds. she did great, completely still. we got to see some scans of her brain, but didn't know how to read them. dr.mclanahan wants to check to see if she has any brain injury & where it is located. we are hoping to get a call sometime today with the results.

dr. matthews will be in france teaching until the end of july. we will make an appointment to see him when he gets back & decide on a surgery date. well, 2 more surgery dates. once the skull piece is molded & put in place he will need to let it set for 7-10 days then go back in and shave it down & polish it up. smooth like her real bone would be. at first we were not really stoked about this being NEW, all the NEWNESS, & being experimental we were not crazy about. but we came home & poured over the pages & research on the internet. we are going with the kryptonite.

when i guzzled down that castor oil i new that hopefully i would go into labor. even if my stomach would be killing me. i was ready to meet our precious girl. it was worth it. never knowing that same oil would one day be used to build a bone in place of her skull. wow!

how thankful we are for those research doctors who mess around & our doctor who is a true artist. forming, molding, creating our daughters new skull. mostly, grateful to our loving, merciful Father. who sent the dust & the oil of the earth.

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