waiting for the big reveal of the newest helmet! the streamline 2010 pinkie!
this is the cast of libbyclaire's head. it is just like her-we get to keep this one.
here is the first fitting before it was shaved down-she needed a "custie" helmet. a little shocked it had no bling or a monogram but willing to deal with it.
pimp my helmet up- some more marks being made.
now this is a little better but needs a little work to get a really customized libs look.
check back soon to see what mama picks up from michael's to really make it look like MINE!
helmet head- sometimes our own kiddos call their sister names, meant in the most loving way, i am sure. well, friday we loaded everyone up (thanks to the teacher work day) & headed to hanger prosthetics & othtotics in charlotte. libbyclaire had a appointment with her neuro last week & they feel like with SO much bone resorption that she needs a more permanent helmet & something custom & harder plastic. it was really cool how they fit kids that need helmets now with technology. she wore a little mesh hat/wrap over her head & then they attached a black cable & box with velcro to the top. a laser was swiped over the entire skull & her image came up on the computer screen...a perfect little libbyclaire head. i am so glad it worked & we only did it once, she has to sit still & for libbyclaire that is impossible. the laser is much better than the cast they would have had to make with plaster if we needed this a few years ago. we go back in 7-10 days to do a final fitting & she will have a brand new custom pink libbyclaire forehead helmet.
when we drove to the appointment i ended up driving so matt could prepare for a funeral he had to do on saturday. on 77 i hit a pair of pliers or some sort of tool, it was in the middle of the road. matt gave me a hard time...we were all on edge. i ended up crying the whole way there. not because i ran over the tool but because i am so tired. i am tired of doctors, appointments, follow-ups, phone scheduling, multiple visits, between libbyclaire & myself we are good for at least 2 to 3 appointments a week. the waiting rooms, endless snacks & books needed to be packed, wrestling with libs just to behave for 2 minutes while they at least check her head. it is a lot & i am tired. i don't want for our baby girl to be wearing some hard helmet. different than every other 2 year old. i want her to be "normal," back the way she was. i want to drop her off at preschool & enjoy my 3 hours, not worry. or let her climb up the stairs or walk around the house without listening for each little thud or bump. i want it all the be different.
I was needing to be "run over", just like those pliers.
i had gotten so bogged down in just thinking how great things would be or easy our week would go if we didn't have appointments & therapy. i had lost sight. HIS sight. i rode to charlotte there & back, pitiful. i had totally put myself in a hole. He had carried us so far, healed us, loved us, comforted us, spoke to us. had i really gotten so far from "the miracle" that i lost all that? i had to reaffirm, our libbyclaire WAS STILL HERE, she was walking...running more like it, talking, eating, busy, hugging, smiling, kissing, playing, SHE WAS HERE! run me over with that!
how many times in life have we gotten in that hole. all full of pity & just need to be run over & then reaffirm who we are & who we belong to. to remind ourselves all the miracles in our own lives small or big. each day whether filled with appointments or disappointments they are ours...a gift to live. i am going on with spirit of joy not pity that all this has happened & all the dates on the calender are steps in our walk, HER walk & i am so grateful i get to walk them with HER...following HIM!!!!
i will praise you , Lord, with all my heart; i will tell of all your wonders.
i will be glad & rejoice in you; i will sing praise to your name, Most High.
psalm 9: 1-2
we had pips doctor matthews appointment this morning. i don't think matt & i have ever had sweaty pits like we did going into his office. yuck! we were on pins & needles. this was d-day...determining day. will our girl need bone grafting surgery or what will the next step be?
i could not imagine another date on the calendar, more 6 am check-ins, IVs, scars, medicines, pain, pacing the waiting room floor, trying to smile & make conversation but really wanting to be somewhere...anywhere else. then the "what if." what if i have our little finn before the surgery,or worse, during. i couldn't have a newborn, be there for recovery for our other baby...the list went on & on. matt & i have had a lot of sleepless nights heading up to today.
well, the first 2 lines of psalm 9 were on my lips as i drove away from the doctor visit today. dr.matthews is going to give libbyclaire a year, yes...a solid year to regenerate her bone. she will stay on her vitamin d & we will need to protect her skull, brain & head but NO SURGERY right now. he feels her bone might be regenerating on its own. only time will tell. we are more than willing to wait.
we thought she might need to be fitted for a more permanent helmet but dr. matthews thinks that the one (a blue hockey looking helmet) she has will be fine. she will need to wear it at preschool, church nursery and any other time matt & i can not be on top of her watching every move. for the most part at home she does not wear it. i look forward to the day when i can put our little girl down for nap & not worry myself into a panic that she might fall out of her bed, or bump her head on the headboard or get up & play around & fall without me being right there.
thank you for all the prayers lifted in our precious girls name. we covet those & believe fully that our Lord has a plan & purpose for this & we have watched it unfold in front of our eyes so far & will continue to do so. i have a grapevine wreath in our kitchen. every time i look at it i am reminded that the body of believers is like my grapevine wreath. all tangled, wrapped, intertwined but woven together in a beautiful circle. a continuous circle. we are grateful to you & cherish you more than you know.
now, back to our lives. we will have dr.mclanahan next week, her neuro-surgeon, then my doctor, then beau & mags will get the 2nd dose of H1N1. all the while waiting for our newest little one. libbyclaire has gotten some funny nicknames & we have gotten some weird questions from people during this. as of now, she has a kickin' mullet...which we now pronouncemulle', sounds french & much better than the billy ray classic. for everyone who wants to touch her head & asks how it feels, matt said it best this morning, she has a jellyfish head. it feels like a jellyfish, really!
i hope psalm 9 will be on your lips today & you will rejoice in your heart!