well, i hate to have to tell you all that we got the worst news of our lives but it is true. claire’s brain development is more abnormal than we thought and we still have no answers for her future- only that a “normal” outcome looks less likely than before. her brain tissue is thin, meaning she does not have as much brain as a typical infant does; there is no pressure in the extra fluid in her ventricles, meaning her brain is not thin b/c of pressure from the fluid so a shunt will not help; and lastly her EEG showed very abnormal brain waves especially in the left side. she has been having mild seizure-like behaviors for the past couple weeks but they were not detected on the EEG, this doesn’t mean she is not having seizures though. we are starting her on an anti-seizure medicine hoping that this will help the neurons in her brain behave more normally, but it is not guaranteed to work. we are also faced with the fact that her head size may swell and she will need brain fluid to be drained if the ventricles do not stop growing or the opposite-  her thin, unhealthy brain tissue may stop growing and lead to a small head size. we pray that seizure medicine will help, her brain will mature and learn to communicate more effectively and her physical development will be completely normal.

are we devastated? yes. are we angry? yes. but are we giving up? never. claire is still the same beautiful, lovable miracle that she has always been. this new information does not change that. we will never stop fighting for her and working hard to find ways to help her reach her full potential- whatever that may be. we grieve for the dreams we have lost, but we will have to find new dreams for claire and still embrace the joy that she brings to our lives. this is the hardest thing we have ever faced, beyond any imagination and expectation but claire deserves all the love, patience, dedication and comfort that we can give her.

she is our daughter, our inspiration, our delight, our precious gift.IMG_0311

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Claire: pronunciation /klɛər/ meaning- clear, bright, shining, illustrious, famous.IMG_0252

is she not the very definition?

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i wanted to pass along that Claire’s brain procedure will be next week, thursday the 15th. we expect Claire will be in the hospital until saturday and one of us will be allowed to spend the night with her. please join us in prayer for Claire’s healing, for the doctors and nurses who will be caring for her and that we would not waiver in our hope that we will have encouraging answers to her brain conditions. also, i want you all to know that Adrian and i are leaning on each other, our marriage has never been stronger and we are so in love with our beautiful, strong baby girl. she doesn’t even know what an inspiration she already is to us. the huge hurdles she has faced in her few months on this earth are nothing short of amazing. in the midst of brain, kidney, reflux and feeding problems she still continues to smile, coo and wiggle with happiness. sure, she is not where other babies her age are developmentally but we are so proud of what she has accomplished and we know that there is much more to come.IMG_0262

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merry and bright.

Dec 27, 2008

IMG_0180 here’s our claire bear in her christmas dress. complete with black tights and shiny patent shoes. she looked like a little doll. her first christmas was full of love and TONS of clothes! claire is fast becoming a mini fashionista if you ask me. claire was awake for most of christmas eve with the venders, doing her little wiggles and smiling a bunch. she napped well on christmas morning and woke up to spend some time with my side of the family and gave her nana some big grins. the only downside was she has increased her gagging lately but so far today has been great so we hope it was just a little bug she was suffering from and not a long term thing.IMG_0201



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we went to see the pediatric opthamologist today since claire is not tracking with her eyes well. we needed clarification that her eyes were structurally normal and all their parts were in the right places. it was a bit of concern b/c eye nerve problems go hand in hand with the part of her brain that is missing. fortunately, her eyes are developed exactly how they are supposed to be! what this means is claire has cortical visual impairment. meaning that her eyes can see but her brain is not processing the information correctly all the time. there is great reason to hope that claire’s brain will figure out how to “see” better as time goes on and with the help of visual therapy. we plan on starting that asap to give claire for visual stimulation. we are so thankful that even in the midst of all these struggles and trials, we still can receive little rays of hope for claire and celebrate the joy that she is in our lives. IMG_0079

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Dec 24, 2008

this week we celebrated two annual occasions in the vender/evjen families. last saturday was tamale time at adrian’s dad’s house. we get covered in masa and red sauce but we have a blast making them! it’s a day full of joking around, great family time and most of all seriously yummy rewards when we get finished. the hours of work are definitely worth it! i think adrian has ate two dozen tamales himself since then. here’s a pic from that day of claire and her tio eric who came into town for the holidays:IMG_0063

and yesterday the girls of the evjen family (plus our new addition of matt’s gf yasmine!) got together to bake like crazy ladies. we made cookies, bars, bark, balls and i even tried my hand at a disasterous macaroon recipe. hint: when it calls for parchment paper don’t try to sub wax paper, it does really funky things to your oven and cookies! we spent the evening getting covered in flour, doing our best whitney houston impersonations and laughing until our faces hurt. i look forward to this time with my mom every year and i am so happy i get to share it with two very special girls now. here’s a pic of us gorgeous ladies:IMG_0133

hope you had a fun time preparing for your holidays!

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update on us.

Dec 18, 2008

wow, what a change a week brings. on monday, we had a routine CT scan just to check claire’s brain development out and fully expected it to be the same as when she was born. her neurosurgeon was surprised to see that the fluid on her brain is increasing yet her head size is not swelling as one would think. this means one of two things- 1. her head will gradually increase b/c there is pressure from the spinal fluid and that is affecting her development or 2. there is no pressure, the fluid is just increasing and taking over brain matter and her brain is just not growing normally. obviously we hope it is the first scenario. what this means is she has to have a brain procedure in january that will check the amount of pressure in her brain. they will drill a hole through the top of her head and the side and insert a tube that will measure the pressure while she is awake over the next 48 hours. this will take place in the ICU. they will drain a little fluid and we’ll see how she does over the next few weeks. hopefully we will see a progress in her development from that. then we will discuss the pressure finding and if they are high, she will need a shunt permantently in her brain to drain the fluid or endoscopy to remove the blockage causing the buildup (if they can find one.) the procedure and shunting have high risks which makes us fearful but they are necessary so we have to go forward. we are devastated that on top of all these brain abnormalities our baby has to have brain surgeries.

please pray for a miracle. that claire would go into the hospital in january and the ventricles would be smaller and her brain matter increased. that she would not suffer in pain from any surgeries, that the results of the procedure would show that her brain can grow.

people have been asking us how they can help. really, the thing we need most is love. it feels like we are in such a deep, dark pit right now and we cherish the moments when we feel happy, lifted up and our minds are briefly freed from the horrific circumstances we are going through. we’re going through so much that is diificult to try to come up with things that would help us. if you have something on your mind, give us a call or email. i’m sure whatever it is, it would brighten our day.

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Dec 11, 2008

we seriously have the best friends ever. there’s a group of 5 couples that we meet with regularly from our church, some are old friends and some new but the support, love and fun we share is unmatched. they are the kind of people that you know would do ANYTHING for you and can always count on. they’ve been our prayer warriors through all of this, our gracious help when i was stuck on bed rest, and our entertainment when we need some social time. tonight a bunch of us got together for dinner @ one of our fave places joe’s farm grill– it was a great time! the highlight was our friend’s one year old daughter, evie, saying “bye claire, i love you” over and over and helping adrian push the stroller. too sweet for words. here’s a couple pics of adrian, me and claire bear tonight.



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get ready!

Dec 3, 2008

thanks to the thanksgiving shopping deals, we finally have a new camera again! so that means more pics and posts from me!

i also ordered some christmas cards from tinyprints.com with a sweet photo of Claire, i can’t wait to send them out! i am planning on using them as thank you notes too for all the wonderful gifts we’ve received for little Claire. hopefully Adrian can give me a little break to write them! it has been such a struggle to find time to do them since after my baby shower i was on strict bed rest and couldn’t sit to write anything, then in the hospital for three weeks, then going through Claire’s hospital time for the next eight weeks and then full blown new mommyhood with added rare issues and tons of doctors appointments. i hope no one feels that we don’t appreciate their kindness in my lateness of thanking them. we are overwhelmed with the generousity of our family, friends and even a few people we don’t even know! just that you are thinking of Claire means so much and the fact you took time to send her a gift touched our hearts.

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Nov 27, 2008

claire’s smile count is at seven! i got four in a row on her four month birthday (the 20th). and i just got three more today at my parent’s house. claire was so attentive and engaged with me, even let out a few coos. it was like a happy pill and now i want more! i am hoping i don’t have to wait as long for the next ones, they’re too precious! it really gave me a speck of hope for her development. happy thanksgiving to all!

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