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.

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.

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:

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:

hope you had a fun time preparing for your holidays!

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.

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.

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.

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!

sorry for the lack of posting. it’s been a rough last week for me and to top it all off my diaper bag was stolen out of the car parked in our garage in the span of a minute. bye bye to my blackberry, digital camera, designer wallet and misc. items. boo! i have never before actually wanted to commit an act of violence against someone but if i ever meet the rascal who did this, i would be very tempted to pull out their hair! at least our homeowner’s insurance is cutting us a check for the stolen goods (after the deductible is taken out of course.) so for now i am camera-less and phone-less. it feels soooo weird.

today marks the end of our stint trying the enfamil gentle-ease formula. we find it to be neither gentle or easy. instead it has created crying fits that last for hours and the smelliest farts ever to be emitted from a 12 pound body. we’re going to give this organic brand a try since it is corn-free and you would be surprised that most formulas have corn syrup solids as their number one ingedient. doesn’t sound yummy to me. crossing my fingers that this one agrees with miss claire’s bowels! feeding therapy is still trucking along. not much progress since claire’s acid reflux is still in full force so we are taking things slow. and still no smiley baby yet either which is breaking my heart but i am trying to remember that claire is setting the pace here and i cannot force her to do what she is not ready to do. she reacts to people with a bunch of little facial expressions anyway and is more alert than ever. i just wish we could calm her upset tummy and make her feel more comfortable! then maybe we could get her smiley.

claire was a cute tiny ladybug all for about 10 minutes on halloween before she started screaming from the uncomfortable costume! well it was adorable while it lasted! and of course miss lily had to match her! my parent’s doggie, gracie, didn’t want to feel left out so we slapped some angel wings and a halo on her. she is after all, very angelic compared to rambunctious silly lily.

it was a great night of homemade chili, time with family and of course halloween candy! hope you all had a great night too!

i captured claire’s adorable sleep smile on film last night and wanted to share it with you all. come on baby, smile at mommy when you’re awake! p.s. – she weighed in at 10 lbs. 13 oz. at the pediatrician today, yay claire!