Wednesday, June 30, 2010

LBK

here is our little beach bum...
the tarpon are running. the sharks bite off the tails of the fish & then eat them later. this one washed ashore. hope we don't see any of those sharks for the weeks we are here.


here is the little bum again.








libby claire has enjoyed her favs all week. she feeds the gulls & chases them all day.









maggie loves seashells. she will search to find the smallest, most perfect shell.

finn doesn't see much of the sun. matt laughs & says he is straight off the boat from scotland. with his strawberry blond hair & fair fair skin.
i think it is a toss up for finn here. he loves the water but not his sisters old pink float.



moses & abe have made the trip to florida with us. (previously known as doc & preacher)


naptime on the beach





the peacocks are out and about. the kids always love to feed them.




a really lost tooth!

our maggie lost her 1st tooth on the beach!
she was so excited-

i am so glad i took this picture of her tooth in her hand because as she ran off the tooth slipped out of her hand & was lost among the sand & shells. poor girl. but beau assured her that even if she didn't put her tooth under her pillow the tooth fairy knows she lost her tooth.




Sunday, June 27, 2010

five!

this was our post last june announcing that we were having baby number 5.
a lot has happened in a year-
here we are this june...with baby number 5.
finn




i pitty

this was what i walked in on after naptime on thursday.
"i pitty!" libby claire says...very proud.
you are pretty!
she had found maggie's purse with all the goodies, even a SHARPIE!




huggums & little silks got a make over too :)


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.

Sunday, June 13, 2010

mcG feet

she's scrappy!


matt was in class all weekend & last night was sermon prep night & so i had some time by myself, once all the kiddos had gone to bed. i have a birthday scrapbook for the kids. each child's birthday has a page. love the creative outlet of scrapping but i am not going to kid myself i have no time to pour into the pages the way i would love. so a birthday album it is. that way 5 times a year i sit & put together a page devoted to that child, that year. it lives in the cabinet in our bedroom. along side is a hot pink big scrapbook matt's sister gave libby claire for her second birthday. for me to one day fill the pages of her journey. the pages are stark white...only a few filled with well wishes & blessings from those who celebrated her 2nd birthday with us. i pulled it out & flipped through the blank pages. i have packed everything away. not ready to go through them, yet.


upstairs in the playroom closet are boxes of everything that we kept from last summer. all the cards, letters, prayer blankets, crosses, ornaments, t shirts, magnets, prayer boxes, hospital cards, hospital bracelets, our libby claires hair, a diaper, newspapers from all over telling of the libby claire story, a bag i still can't unpack, business cards, referrals, pictures, lists of medicines, anything & everything from that time in our lives is upstairs. packaged away perfectly.


as is opened each box, it all fell upon me. the mix of emotions flooded again. letter after letter, prayer after prayer, cross after cross...it all came back.


i have not been able to fill those blank pages. her journey is not over. she is not complete yet. her bone that was placed back in september completely absorbed. we saw dr.mclanahan last tuesday. he says she is "looking good." we are not sure what her neuroplasticity will be. basically, that is when the healthy brain assumes the injured brain functions. more therapy is added to our week. we are going in the next few weeks for a new helmet. tuesday we will meet with the therapist to add to her ISP, physical therapy. she has started to turn her toes inward, even tripping over them. this wednesday she will have an appointment with dr.matthews, her craniofacial "bone" doctor. hopefully, to see if the vit D is helping the skull bone to re-grow. then thursday we will be off to levine children's hospital for a brain ultra-sound. the scheduler asked if she needed sedation during the process. she obviously doesn't know libby claire. so we will try without sedation & pray that she will sit still. all other times matt has been able to be laying across her, snuggling with her to keep her calm. i don't think he can go back this time. hopefully, with this scan we will know a little bit more of her brain injury or lack there of!


we are asking for more prayer, relentless prayer, petition our Lord again on behalf of our daughter. in Jesus name:




  • pray for her bone to regrow, strong & hard...layer by layer


  • pray for her brain to be healing


  • pray for her neuroplasticity


  • pray for her therapies


  • pray for her speech


  • pray for all her doctors


  • pray for the vit D to help
  • pray for her safety (with the skull bone missing, every bump or fall could be devastating)

one letter i came across i remember made us laugh when we were at all children's. someone said "libby claire can do this if anyone can...she is scrappy." well she is. seemed fitting since i was digging through the boxes wanted to get organized to start this scrapbook journey. i have the hot pink scrapbook out now. i am going to scrap away, remembering it all. as i cut, paste, color & create each page. i am going to pray over every page. i will pray abounding blessings for each person who gave of themselves for libby claire & our family, each prayer, cross, prayer blanket, letter, card, meal, vigil, picture, everyone.



i am ready for the pages to be filled with the wonderful miracle of our libby claire.


john 14: 13-14
i will do whatever you ask in my name, so that the Son may bring glory to the Father. you may ask me for anything in my name, & I WILL DO IT!

Friday, June 11, 2010

Monday, June 7, 2010

miss priss is 7!

happy 7th birthday to our precious girl!

maggie you have made us who we are today. every moment we spend with you we learn from you...to look at the bright side, laugh from the very bottom of our bellies, give of ourselves freely, put the other person first, goofiness is always best, true beauty comes from within, footloose & fancy free!

we love you!



happy birthday to maggie! we are going to DISNEY!


the grandparents are awesome-

maggie got her ticket to disney from meme & pops
&
mima & papa are going to keep the 3 boys while we take just the girls on a princess trip to disney!


mima took maggie on a shopping spree to justice.


while going in there was a brother sitting outside waiting for his mom & sister to finish shopping. NO BOYS ALLOWED!


we completely indulged maggie on her birthday. anything she wanted to do we went right along with. first with breakfast, she dressed however she wanted, even wore cinderella high heels out, before we left she temporary tattoo"ed" herself up, then a lunch out, off to do some shopping at justice, ears pierced, family dinner, gifts & to top it of cinderella cake :)


yes, she got her ears pierced. ahhhhhh!!!!!!


maggie got to go to the disney store & pick out some things to take on her trip to disney world!









happy 7th birthday maggie!

Thursday, June 3, 2010

the worker man

watchin' the work-

weeks ago when they started clearing a lot in our cul-de-sac a "worker man" waved to libby claire, who is always on the front porch watching the construction. he was a big guy, middle aged, & had the kindest smile. the one that reveals his heart...from the inside out. he then asked, "how's our girl?" huh? turns out last summer his church had heard of libby claire & had been praying fervently for her & our family. he has been keeping up with her for the last year. the end of last summer my parents were here & the same man was working in the neighborhood & stopped just to check in on our libs.


libby claire loves the worker men. she watches them, waves to them & says "hey" a million times. relentless, until they finally pay attention to her. but not this guy. he is eager to wave, eager to smile. so not the norm! it deeply touches me to know that this man petitioned God, was brought to his knees, pained for our little girl. unreal!


Christ has been revealed to us by so many people. in a world where He is said to be unknown...distant...not the reality...dated...He is not. He is in the worker mans heart. someone totally gave to us. not knowing us or ever meeting our libby claire. that is the nature & heart of our God.


one who deserves to be known...who is close...is the reality...never dated...HE IS!


i think libby claire knows that worker man in some weird way. she reads into his waves & smiles. almost knowing of the prayers, concern & care. two of a kind. as mismatched as the two are. a little 2 year old girl with pig tails & this worker man, just the same in His eyes.

i plan on being just like those 2-
on my knees fervent in prayer for someone else & relentless to show others Christ!

boyce/pressly family

memorial day was rainy but wonderful! we went to papa & mima's. they hosted the boyce family reunion. which only happens every few years.

ben & jerry

ben
(this was taken 3 years ago of mags)
&
jerry


we love us some ben & jerry's ice cream :)

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