guess what our little superstar is doing now? getting the hang of eating rice cereal from a spoon! we practice once a day and so far she LOVES it! it is the cutest thing ever, super messy and she makes all these quiet coos as if she is saying “mmm mmm good!” she really is showing great skills by keeping most of the cereal in her mouth and not on her chin and she’s getting the hang of moving the food around with her tongue and down to her tummy. it has been a blast!

just a little note that there are tons of pictures if you want to browse around. click on “photos” on the right sidebar and then on whatever album you want to see. i added quite a bit more to the albums recently. enjoy!

today Claire is 6 months old! we celebrated by going out to lunch as a family at Liberty Market. the weather is so nice here (about 80 degrees) that we sat outside on the patio. it was a great day. i even finally got around to taking down the Christmas decor while Claire napped. here’s some pics from the day:

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.

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

is she not the very definition?

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.

i saw this over on my friend’s blog, lucy’s house, and decided to go for it.

from left to right:

1. What is your first name?
2. What is your favorite food?
3. What high school did you go to?
4. What is your favorite color?
5. Who is your celebrity crush?
6. Favorite drink?
7. Dream vacation?
8. Favorite dessert?
9. What you want to be when you grow up?
10. What do you love most in life?
11. One Word to describe you.
12. Your online name.

make your own at mosaic maker, fun stuff!

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!