new life.

Aug 12, 2009

claire has emerged from her keppra coma. i have never seen so many smiles, so much awareness, i feel like she is allowed to finally experience her world. i hope whatever medications we try in the future never take her away from me again. just look at her eyes, they have come alive.

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“I will turn their mourning into gladness;
I will give them comfort and joy instead of sorrow.”
Jeremiah 31:13

thank you Jesus.

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flagstaff.

Aug 12, 2009

adrian, claire and i ventured up north to flagstaff last weekend for a little overnight stay with our friends– mike, jina and baby lyla. let me start by saying the weather was DIVINE. i cannot imagine living in a place where the sun shines but you don’t feel like you are roasting on a spit. in fact, it felt so nice that i forgot to wear sunscreen and burnt my arms. ouch! we wanted to go to the cardinals training camp but the crowds were absolutely insane. i mean 10s of thousands of people insane. so we set up on the first practice field and relaxed in the shade. we got to see big red the mascot do some crazy backflips with a giant bird head on. it was pretty funny. here’s our little cheerleader:

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then we walked around dowtown flagstaff and ate some amazing crepes on this cute little patio outside. nutella, ghiradelli chocolate, raspberry preserves and whipped cream? yes, please!

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then we stopped by the famed macy’s coffee. my cappuccino was perfect!

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after that we hung out at the hotel, played some pass the pigs with the olbinski’s and marveled at our 3 foot deep, reclaimed water, liquid/solid buttoned toilets. they were an experience to say the least.

the next morning we trekked back down to the heat with a little pit stop at the anthem outlets, yay!

it was a nice, restful weekend. claire was an angel on both car rides, was a little cranky at the hotel but then let us sleep most of the night. it was fun to get away with friends!

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babymae couture.

Jul 30, 2009

another of claire’s most fabulous birthday presents was from her aunt alex and uncle ryan. a super cute dress from babymae couture. it’s the talented handiwork of their close friend- danielle axtell. danielle’s line is going to be featured in a few baby boutiques soon and is also available on etsy. congrats danielle! i am in love with the colors, the print and the cute flowy shape! it is even more adorable in person. claire was being my little model one afternoon and i snapped these shots of her being gorgeous as always.

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party pictures.

Jul 28, 2009

our friend and photographer, misty, posted a recap of claire’s first birthday bash on her site. check it out here!

here’s a little preview.

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i can’t wait to see all the pretty and fun images misty captured for us. she is super talented, nice, pretty, smart, creative- i could go on and on singing her praises. but seriously guys, if you are in the valley and want an exceptional photographer then contact her! thank you misty!!

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but…adrian and i sure do make pretty babies.

i’m just sayin’.

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meet clarence.

Jul 27, 2009

IMG_1155 claire was showered with a mountain of thoughtful, generous presents for her birthday. but i think if she could talk, she would tell you that her favorite gift was clarence the claire bear. she just adores him. he rides with her everywhere she goes in the carseat/stroller and she holds onto his little ears or arms with love. every kid needs a special stuffed best friend and clarence is extra special because he is handmade by claire’s auntie amber. i am sure he will be a part of the vender family for a long time and will be a lasting memento from claire’s childhood. he is extra cute and proof that even boys can look great in pink. thank you so much amber! (and if you haven’t yet, order something from her shop!)

and here’s an extra pic of claire on her actual birthday monday before going out to supper with mommy and daddy to celebrate. so pretty!

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one.

Jul 20, 2009

happy birthday to our little girl! wow. it is so true when they tell you that the years will fly by. i can’t believe that 365 days ago, claire entered this world and changed ours forever. she has been through so much. unimaginable things. things that i don’t know if i could even handle. it is amazing to look at my tiny one year old and think she is stronger than i am. to honestly say that this little girl is my hero. that even though she cannot “do” very much in the traditional sense, i have learned so much from her. she is an excellent teacher. claire came into this world a miracle, a fighter and has already proved so many doctors’ expectations of her wrong. i have no doubt that she will continue to amaze us, inspire us and show us a love beyond understanding.IMG_1079

happy first birthday claire bear!

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the big debut.

Jul 10, 2009

yes, i have been MIA for a few days. sorry. but it will all be well worth it. trust me! are you ready?!?!

i now present to the internets the worldwide premiere of the most beautiful smile in the entire universe-

(sorry if it takes awhile to load!) but didn’t that just make your day? every time i watch that happy face my heart bursts with joy. in the midst of seizures, intense medications, special needs and abnormal sleep patterns- she still can give us a glimpse of pure bliss.

some things you should know about claire- she loves clicking noises, she loves repetitive vowel sounds and she loves to wiggle.  we indulge those loves of hers every opportunity we get. i don’t care if i sound like a weirdo to everyone in the room. she deserves it.

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appt update

Jul 1, 2009

adrian took claire to the neuro appointment at barrow alone and it went well. he said he liked her neurologist, dr. ng, even more this visit than before, which is a comforting thing for us. he made no mention of the scary ATCH steroid injections as a treatment option for claire (phew!) and instead wants to try raising the doses of the two seizure meds (keppra and vigabatrin) that she is on currently.

if that makes no difference in the next couple weeks then we will try the ketogenic diet. it’s basically atkins to the EXTREME. she would have to start it in the hospital under watch of a dietitian, who would also train us on implementing the diet. many families see a great reduction in spasms on it so we have no problem giving it a try if recommended. it will be difficult to stick with- we’d even have to switch what wipes, lotions, shampoos, etc she uses but if it helps we are all for that. and if it doesn’t help then we have a couple more medications to try (which i am praying is not needed.) from here on out the new meds to try are more toxic to the body and have a lot more serious side effects than the tiredness, insomnia, irritability and spittiness that we are dealing with now. so in the next couple weeks we will just have a more sleepy, grumpy girl as we increase the dosages. but at least she is a sweet, cute, sleepy grumpy girl (see evidence below)

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please keep praying that this will work for claire and that God would miraculously heal her brain. thank you again for all of your support, we love you guys.

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honesty.

Jun 29, 2009

it’s been a tough week because it is becoming more evident that the newest seizure medicine from the UK is not taking away the spasms. claire has a neurologist appt at barrow tuesday afternoon, so i am sure we will be talking about the next step. i am dreading it. so much so that adrian may have to take claire without me. i literally go into a panic just thinking about this. i don’t know why but i avoid all conversations about claire’s brain as much as i can. i do not even want to think about it, see pictures of it, hear more explanations, bad news, etc. it makes me feel like i am having a mental breakdown. i am not exaggerating in the slightest. i am petrified. adrian says that if it is too much for me that he can take her and have all those brain talks and just tell me what i need to know. he is so much better at explaining all of this to me than the doctors. i hate doctors. i don’t care if they are nice, or caring, or smart. they SUCK. he says that i take claire to so many doctors appts alone and so many therapy appts alone, that if skipping the neuro doctor will help me then that is what he wants to do. i love him so much. but i also don’t want him to be there alone either. i know it is hard for him too. at church this weekend, we talked about that even though life is uncertain, God is not. that the bible is not full of happy-ever-after, hunky dorey life stories. remembering that the hebrew nation waited on God for 400 years to have their prayer answered. that even when it feels like God is absent, not showing up in my situation- He is still there. that He often uses the biggest messes to do the most amazing things. and we know that in ALL things God works for the good of those who love Him. that He has the whole world, my world, claire’s world in His hands.
but my heart still asks why, i am still scared, i am still hurt, i am still jealous of my friends’ babies, i am still angry. yet beneath all of that, i am still waiting and i still believe.IMG_0802

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