Here are some of my favorites from the photobooth at Claire’s party:
Sara, Rachel and Jina being goofy.
Just a few of the adorable kiddos at the party.
Katie, Jason, Levi and Estelle.
Matt, Yasmine and Chloe. Fun!
Sarah, Alex and two cuties!
Ryan and Alex. My family is awesome.
Mike, Jina, Lyla, Ty and Ty’s Iphone? Haha.
Lisa, Abby, Logan and baby number 3!
Omg. This one might be my fave. Mike teaching Todd how to be gansta.
Sara, Tyler, Rachel, Wyatt and Tatum (if you can see her!)
Abby and Logan. (They actually took these in secret of themselves, too funny!)
Daireth, Matt and Tatum.
Mom and Marsha.
Mom, Dad, and Chloe.
And now for our personal family fun…bear with me, we find ourselves quite entertaining and we went a bit crazy.
So much fun! I think a photobooth should be standard party activity.
Claire turned three at the end of last month. I can hardly believe it. We had a nice get together with our closest friends and immediate family at the house. I handmade a lot of decorations for Claire and we ate yummy brunch food. Here are some pictures our dear friend Mike Olbinski snapped of the day:
The theme of her party was based upon this print, which is a song title that The Roots perform from her favorite children’s show. So the decor featured lots of hearts in coral and aqua. I didn’t remember to take photos during the party so I sadly didn’t get any big shots of all the things I made to decorate the room. There is so much to do when hosting a party that I forgot all about documenting all of that! But I really appreciate Mike getting these pics because without them, I would have none!
We also did a photo booth upstairs. It was lots of fun to look through the pictures and see what everyone did. I’ll do a post soon of my favorites 🙂
We love our friends and family. Too many cute kids to count in this bunch.
Claire had an okay time. She got a little overwhelmed with all the people and noise at a few points. I totally understood. So we don’t have many pictures of her either. But her dress was adorable and had interlocking coral hearts on it. Of course she coordinated with her party, duh!
We showed a slideshow at the party with everyone’s pictures and videos that they sent with birthday wishes for Claire. I will treasure this slideshow forever.
I also made a picture collage of Claire throughout her first three years. This picture is a closeup but it was in the shape of a giant heart.
Hope you enjoy the photos, if you want one of them to download and print off just email me and I can send the photo to you.
Love you all!
Happy 3rd birthday to our beautiful Claire. It’s amazing how time flies by, especially with all of the obstacles we have to go through. I don’t write on this blog often (Nicky does a really good job of putting together these posts) but It’s been a while since we’ve updated our blog so I wanted to give a brief update.
Claire is still battling through her seizures multiple times a day, everyday. If anything, we think her seizures have slightly worsened in recent months, having some seizures last moments longer and appear more intense. We thought it was the zonegran medication that affected this, but we’ve weaned her off this medicine for over a week now and we see no change yet. This just may be her natural seizure pattern now.
So to arrive at her 3rd birthday and feel that her seizures are worse is very disheartening. We deal with the typical kid things (fussiness, pickyness, bad-timing-for-poopy-diapers) but nothing punches you in the gut like these seizures. To say that they suck is a huge understatement. We have to try really hard to stay hopeful that the next attempt of treatment is something that can help. There are never guarantees, but we have to will ourselves into believing, despite our constant letdowns.
But don’t think it’s all negative. Life with Claire brings a mixed bag of emotions, including lots of happiness. Claire still loves percussive sounds and enjoys her favorite tv shows. Even in the middle of a crying fit, the intro theme to Yo Gabba Gabba does wonders in calming her down 🙂 She is making a lot of improvements in her physical mobility. She’s a pretty strong girl! We have amazing therapists that love Claire and work hard to help with her development.
We are so thankful for our amazing families that love on Claire and provide Nicky and I so much emotional support. We have awesome friends that show so much love to Claire and to us. Claire has cousins and little friends that are so compassionate and loving towards her, anxious just to be around her and make her smile. You have no idea how much this means to us. We thank God for blessing us with a child that is such an image of beauty.
Like I said, it’s a mix of emotions but that’s what it’s like to love Claire. To love Claire, your heart needs to break because of these seizures. It’s a tragic but real part of her life and we owe it to her to ‘hurt’ with these seizures. But to love Claire is to also embrace the beauty and joy that she is. To love her is to be overjoyed at all the moments in which Claire experiences happiness.
Our ultimate wish is that Claire’s seizures go away. We’ve got a lot of things in place to try to fulfill that wish. But today, I have a different wish on Claire’s behalf and I hope you can help.
So, what is my wish?
I said earlier one of the things that makes us so happy is when people show love to Claire. A lot of you do that so wonderfully, but I’m looking for something more unique today. Something that we’ll show Claire someday really soon and tell her ‘Look at all the people that love you.’
I want you all to say ‘Happy Birthday’ to Claire. I want you to REALLY say it. I want a photo of your face and a little message saying ‘happy birthday’. Or, I want a video of you actually saying ‘happy birthday’ to Claire. Twitpic ‘em or Twitvid ‘em on Twitter. Or use tinypic.com to upload it and send me the URL. Or just send them straight to me if you know how to. Blog comments are nice, but I’ll be honest and say that I’m really hoping to capture peoples faces with a message. I want a big collage of people saying happy birthday.
Again, I want Claire to see the people that love her. Selfishly speaking, it would also mean a lot to Nicky and I too. More than you realize. So take a few seconds out of your day and really say to Claire ‘Happy Birthday’!
One final note… I’ve talked already about going through each day with the sadness that Claire’s condition brings but willing ourselves to embrace the joyous life we have with her. This song ‘New Day’ by Robbie Seay Band is an anthem of sort for us. It’s a reminder from us to Claire (and also for Nicky and I to each other) to enjoy the new days that God gives us. Even on her birthday today, we’ll see seizures today (and it will suck), but it’s a new day and in the end it’s gonna be alright.
“New Day” Lyrics
I’m gonna sing this song
To let you know that you’re not alone
And if you’re like me
You need hope, coffee, and melody
So sit back down
Let the world keep spinning ‘round
For yesterday’s gone and today is waiting on you to show your face
It might not be
The prettiest thing that you’ll ever see
But it’s a new day, oh baby, it’s a new day
And it might not look like
A beautiful sunrise
But it’s a new day, oh baby, it’s a new day
I’m a pilgrim soul
I’ve traveled far and come back home
This land is hard and cold
For those who long to love
And I know it might seem
That the world is crumbling
But it’s me and you dancing in the kitchen at 2 am
And we’re still alive
It’s the calm of the storm that comes blowing in
It’s the springtime saying I’m back again
The clouds that roll by
Me and you love – everything’s alright
Standing in the rain with nowhere to go
Laughing and we’re spinning and I hope that you
Remember this day
For the rest of your life
Me and you love – everything’s gonna be alright
And it just might be
The prettiest thing that you’ll ever see
It’s a new day
Oh baby, it’s a new day
If you look outside
To see a beautiful sunrise
It’s a new day
if you haven’t heard yet, our good friend, mike, has uncovered one of his natural talents just in the last year. it seems like it was only yesterday he was coveting our mutual friend’s camera (on our labor day weekend trip to san diego) and now he is selling his prints to the masses and getting tons of requests for photo shoots. he is THAT crazy good! isn’t it so neat to think that as a 30-something adult you could have this genius ability that even you aren’t aware of until it is discovered? i love that. so check out mike’s work, order prints and contact him for your own photo shoot!
and here are some photos mike took spontaneously of claire recently:
i love everyday pictures like this. just capturing a moment of fun while out with friends. i’ll treasure these shots forever, mikey.
i know i know, it’s been forever. now that my ancient laptop is working again, i have a chance to post!
the latest news on claire is that she had her kidney surgery and it went extremely well! she has a nasty incision to show for it but hopefully the removal of the bad tissues will bring her more comfort. i imagine a big sausage of a ureter in that little body would feel yuck. i won’t go into the boring details of the hospital stay but let’s just say i LOATHE hospital stays more than anything. i would rather eat a bug.
anyway, her spasms have been pretty good lately. not too many and not too severe. she is having a repeat MRI on tuesday so please pray for that. we want to get a better picture of how her brain looks now since her head has not been growing at a normal rate and we still can’t figure out if these things are really seizures or not. i am a nervous wreck when it comes to the brain stuff so i need all your calming vibes, okay?
adrian is doing great. he’s working hard and taking good care of us vender girls. we’ve been going for family walks every night which we all love, especially lily- and it is helping me in my weight loss quest as well. we’re getting excited for easter this weekend and for the first preview of our friend brian’s new church, day|twelve. i’m sure you’ll hear much more about that from me in the future!
here’s some new pictures from a family lunch to the farm at south mountain.
i haven’t updated in forever. but with the holidays, a wedding and lots of family in town i had zero time! here’s a few things to let you all know (in case you didn’t already)
claire- she has learned to roll over! and hold her pacifier in her own mouth with her little hand and play a fun eye blink game and is off all seizure meds for the time being. she is still having spasms but not as many and they are milder. we are deciding what to try next. we just took her last week for a scan of her blocked ureter issue so please pray for those results as we should hear soon what the next step is. we are hoping that the blockage has miraculously cleared, that her kidney tissue is healthy and there is no need for an operation! we also recently found out she is allergic to melatonin after she had a severe case of the hives over her entire body for 5 days. that was an eye-opening experience. we were at the hospital 3 days in a row, it was exhausting and poor claire was miserable! she is all better now. unfortunately, the melatonin is out as a solution to her sleep/spasm correlation. as i said earlier, we’re still trying to determine what our next course will be with seizure treatment.
me- i went carb free for a week to kick start a diet and lost 8 pounds. for a long term solution, i am devoted to eating healthier and taking daily walks. i am hoping to lose about 50 lbs total by this summer.
adrian- he has accepted a full time salaried position with his contract job! it is a wonderful company and he couldn’t be happier. he is still doing some side projects but we have a lot more job security now and plus he is learning and growing so much in this role. i am so proud of his talent- he is self-taught, amazingly smart and tries harder than anyone i know. here is his company’s web site in case you were curious.
misc- the holidays were great. lots of family time, baking, tamale making and gift exchanging. we attended christmas eve services at my family’s church, cornerstone, and got to see our sister, alex, sing on stage. she has such a beautiful voice! then wedding madness ensued! my littlest brother, matt, married yasmine on january 2nd. yippee! the wedding was in his airplane hanger (so cool!) and it was a joy to be a part of. lots of family made the trip down from minnesota and it was so nice to spend a little time with them. here’s some photos from the last month and a half. i haven’t been very good about picture taking but here are a few to enjoy!
who doesn’t love Christmas decorations? i turn on the twinkle lights in the morning when the sun is still beginning to rise and they give me the warm fuzzies throughout my day at home with miss claire and lily. i love that the weather has been extra cold and somewhat cloudy for us desert people. it actually feels like the holidays. here’s my personal winter wonderland-
so it’s official i am a bad blogger. but i have excuses, you know? many of them! anyway, here’s the latest in the vender world-
- drumroll please…my littlest brother matthew and his girlfriend yasmine are engaged to be married!
- we have a new addition to the evjen side of the family, an adorable golden doodle wendy. her proud fur-parents, ryan and alex, are getting a glimpse of the sleepless nights, crying and lots of bathroom business that children bring. 🙂
- adrian, claire and i are headed out this weekend to enjoy labor day in san diego. a relaxing three day weekend on the beach sounds perfect to me!
- claire’s new hospital date for the ketogenic diet is september 21st. also, just this week claire has pushed the keys on a piano toy all by herself and banged her maraca on her high chair tray independently too. those are HUGE things for her! she also has learned that throwing her arms up in the air means “pick me up!” GO CLAIRE!!
- it’s september. just this fact makes me extremely happy. september means october is around the corner and that is my most favorite month ever. i am already planning what new autumn crafts i can create. happy happy joy joy.
all right, that’s it for now. i am working on changing up the look of the blog and i promise to take lots of pictures in san diego to share. you all still haven’t seen claire in her yellow polka dot bikini. it is the cutest thing ever.
please take a minute to stop what you are doing right now and pray for my friends’ newborn son, max. max was born with a condition called CDH (congenital diaphragmatic hernia.) it refers to a defect in the diaphragm that allows the abdominal organs (stomach, intestine, liver, bowel, and spleen) to migrate into the chest cavity in utero. CDH is known to occur in 1 out of every 3000 live births and currently has an average survival rate of 50%. max had been kicking some serious CDH butt since his birth day on august 10th. he was even going to be extubated off his breathing tube today. however, last night he had a very bad episode and it was discovered that his lungs were filling up with blood. max is now on ECMO, which is basically heart and lung bypass. please please pray for this little fighter, that he would receive the rest and strength he needs to beat the odds and heal. please also keep his amazing parents, claire and jordan, in your prayers too.
we love you little miracle max.
these powerful words were written over 100 years ago and i sing them to my claire everyday.
’tis so sweet to trust in Jesus,
just to take Him at His word.
just to rest upon His promise,
and to know thus saith the Lord.
Jesus Jesus how i trust Him,
how I’ve proved him o’er and o’er.
Jesus Jesus precious Jesus,
oh for grace to trust Him more.
the other day when i was in a panic, fearful and almost shaking as claire was having a very difficult time- all of the sudden a voice spoke inside me saying “i know this is hard. and it’s going to be hard for awhile. but it will get better. she is going to be able to do so much more than you know now. it will be okay. it is hard now but it will get better.” and then my body became calm and still. you have to understand- i knew that voice was not my own because i was about to break down. and i’m not crazy either so don’t think i’m hearing strange voices or something. i know that voice. it was my rock, my redeemer, my sanity, my everything, my Jesus.