As far as recent events in the Vender world…

Adrian hasn’t been traveling for work as much, which means everything to me. And his job is great! He was selected as a speaker at a big name web conference in NYC and went out there to present last month, I was so proud of him. He is remarkably talented at what he does. I’ve kept busy with Claire and taking care of our home as usual, and also with my lovely side blog Hey Little Birdie. I’ve also found the time to do some crafting, baking, and try some new recipes, which keeps me being me. We’re gearing up for the holidays and wishing for cooler weather. We plan on going to the pumpkin festival this weekend and Claire is going to be an ASU cheerleader for Halloween.

As far as an update on Claire, I don’t really want to go into the seizures too much. It’s just too hard to talk about and I feel like I have to talk about it with EVERYONE. Family, friends, therapists, doctors, social services, strangers. I want so much for the focus to be more on Claire as a person and not on her disabilities. Let’s just say this past summer has been absolutely heartbreaking in terms of the severity of her epilepsy, we are trying new medications again, and as always will not give up fighting for her freedom from these awful seizures. We are participating in the Phoenix Epilepsy Walk next month, here is a link if you want to donate to Claire’s team. And if you live in the area, we would love to have you join us and walk! It should be a fun time, you can bring dogs and strollers too.

A few other fun recent happenings with Claire is that she has been grabbing things when they are touched to her hand and she does this activity we call her “loco legs” where she gets jingle bells on her ankles and kicks and dances like crazy. It is beyond cute and silly. I took a little video of it, so I will have Adrian help me upload it. I’m also warming up to the idea of Claire attending special needs preschool. Two of her therapists work at the one we would send her to, and they report that her teacher is wonderful. I’ll have to go sit in and visit soon to get a better feel for it. It is honestly hard to think about, every time a new milestone arrives my heart hurts all over again. It’s difficult to see your friends’ children going through these normal childhood transitions and to mourn all over again for what happened to Claire. I know it is something that will continue throughout her whole life for me. And although it is a sadness that may never completely heal, I am slowly learning how to cope and process it better. I definitely feel different about that grief than I did when Claire was first born. I hate that so much has been taken from her, that she has to go through such hard circumstances, that she has seizures daily… but the love I have for her is greater. Just one smile or tiny reaction from her brings me indescribable joy. She is unbelievably brave and drawn to music, two traits she got from her amazing daddy. She is stubborn (especially with therapists) and loves to be silly, which she got from me. I love who she is. And I hope as time goes on, we will get to share more of what makes Claire so special with the world. She really has a lot to teach it.

Here are some more recent pictures:

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.

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.’

2. Please read this post. If there is anything that I would love to teach the world about Claire, it would be much of what she said and more. I especially wish that every doctor could read it. You don’t know how hard it is when you are constantly in the presence of medical staff and most ignore the fact that your child is even in the room. No “Hi” or “Bye” to Claire, talking about her like she isn’t there, having less of a regard for how side effects/pain will make her feel. It breaks my heart. I yearn for a day when everyone- no matter how they look, move, talk, act, or learn- will be treated equally, with consideration and kindness. I heard someone speaking the other day that repeatedly used the term “psycho.” And I know I have used it in the past too. But it got me thinking what if someone was listening who dealt with mental illness. I was thinking about how would it make them feel when we use a medical term about something they struggle with as an insult. Or words like spaz, spastic, especially the R word. I want to be more mindful of choosing not to say them. There are plenty of neutral words to use to describe something as crazy or stupid without choosing something that insults a group of people. Anyway, I hope you read the post and take what it says to heart. Love you all!

The birthday boy. And if you are wondering what my dad is doing…he is singing, REALLY loudly.

All the gang after dinner.

Claire with her loot. One of the only pics I snapped of her cute outfit before she made a mess of it!

We had a water balloon toss, one of my favorite cheap games. Matt and Yasmine won!

Then a candy/money egg hunt for us adults, Yasmine won!

The puppies had to wait outside during the hunt.Wendy wanted to join in though.

The next few are Claire and Chloe being silly. That is until Chloe attacked Claire. Ha ha!

The end of a nice day. I had to throw on a new tee since my little brother soaked me in the water balloon fight!

in actuality, i hated the way it looked. it made me want to barf. and i didn’t want anything to do with it until i spruced it up a bit.

hope you like the makeover! i wanted to keep it simple and clean. hopefully when we get some new family pics taken this year, i’ll change out the picture in the header to a more recent one. but thanks to our good friend mike for taking the pretty picture of claire back at her second birthday party!

a lot has happened since i last posted. the holidays have passed, a new year has begun and many things have changed.

adrian is still loving his job and being a spectacular husband/daddy as always! the exciting update on him is that he will return to playing drums at church on april 3rd! i cannot wait!!

i am still blogging with my friends over at Hey Little Birdie. i absolutely love it. if you haven’t checked it out yet- please do! i’ve also started to help out organizing refreshments at our church’s art gallery for First Fridays downtown and on sundays for church services. a love of hospitality and food go hand in hand for me so it is a perfect way for me to contribute.

lily is doing great. still as hairy as ever. she’s had some bad allergies which make her kinda stinky lately. but she is on medication and we should get that under control soon.

and claire. well as you know, there is always oodles of news where she is concerned. she has been moving and growing and babbling up a storm. every day her little personality comes through more and more. she loves to roll around on the floor, is learning to scoot, and we get tons of smiles and giggles. she definitely lets us know what she likes and doesn’t like!

her seizures have changed. she doesn’t do as many. but some of the ones she does are very different than they used to be. she does a stiffening in her body for a few seconds and then releases. she might do it once or twice and then she’s done.

she has two hospital visits coming up. first one is march 11th for a g-tube. it is a small button like thing on her belly. we can feed her directly into her tummy or give her medications through it. it will be a beneficial tool to making sure she gets all the hydration, nutrition, and medication she needs. since she is growing so much, i spend SO much time trying to get her to get all her food in. she is a typical toddler who might decide not to eat- whether she is sick/wants to play/is mad/the options go on and on. except she is not the typical toddler who eats fast and makes up for missed meals on her own. and it is a problem when i spend so much time force feeding her that we don’t have time to work on teaching her new things like straw drinking or on therapy time. she also hates her medicine and tries to spit it out all the time. it is a big stress. a g-tube does NOT mean that claire will not eat by mouth. or that we are giving up on her doing it 100% on her own someday. in fact, it will help give us more time to work on those skills. we can practice chewing hard foods and drinking from a cup all while her nutrition is being put directly into her tummy. it’s not something that anyone will notice unless she is unclothed and it will not hinder her in any way. when we don’t need it anymore, it is a simple few stitches to remove. the surgery should be quick and just an overnight stay in the hospital. please pray for the surgery! pray that claire would be safe, heal fast and benefit greatly from it!

we’re also going in on april 4th for an overnight video EEG to get a look at what her brain is doing. i am not looking forward to it in the least. so i’m not going to think about it until the date is closer.

anyway- that’s the latest!

here’s some pictures from the last few months in case you aren’t on facebook to see them.

the hardest thing was claire started having more spasms the day we left. she has done such a big girl job of switching off formula and eating lots of solid foods. unfortunately, it seems her brain isn’t too keen on these changes and is letting the ugly spasm monster emerge with greater force. starting tonight we went back on the formula to see if it helps get things under better control. all those spasms meant i was a big ball of emotion for much of the trip, which always makes things not quite as peaceful and fun. but i really tried to keep calm and remember that this is not permanent and enjoy the time we had at our beach house. (this mantra also came in handy when our car almost broke down in el centro, california. a super hot, super small town in the  middle of nowhere. one hour and a big answered prayer later, it thankfully started back up!)

one of the best parts was a visit from adrian’s brother, eric, who lives in san diego. we already miss him and can’t wait until christmastime to see him again! of course i did not get many pictures, big surprise huh? it’s always so hard for me to remember that with everything else going on! i did manage to snap a few though so here they are:

our little sunkissed girl playing one morning.

the dad’s getting buried in the sand.

all covered up!

mommy and claire enjoying the nice weather.

you can’t tell but adrian is somewhere under that wave. it smashed him!

claire had the cutest bikini on. but she wouldn’t lay still and model for me. she was too busy rolling and trying to get in the sand!

fun football games in the FREEZING ocean! they didn’t seem to mind too much though. they stayed out there until they were shaking and bright red from being knocked around! i already wish i was sitting there watching them again. if only we could move to san diego full time! i wish!

below is the brunch buffet table. it included mini quiche, lemon whoopie pies, pineapple bars, banana bread pops and fruit cups. the banners are from the fabulous tomkat studio.

we also set up a lemon:aid area with information on blood:water mission and lemonade favors for the guests. (and a hunky guy is posing by it for you.)

here’s the birthday girl.

and her beautiful hands.

here’s our other little baby enjoying the party.

here’s some pictures featuring my pom madness. believe me, this is only half of it.

we also made little jingle bells to ring after we sang the happy birthday song. if you know claire, she LOVES bells!

and just a couple more pictures our claire bear.

we love her so.

claire at two:

about 32 inches, 22 lbs 4 ounces.

this year claire has learned to roll over front and back, multiple rolls. she pushes herself up on her arms during tummy time and is trying to scoot herself around. she has learned to put her hands and arms in her mouth, grasp objects with a prompt, kicks and pushes with her legs like crazy and loves to rock herself. she loves watching yo gabba gabba on tv. she loves music, bells, clickers, maracas and lights. her favorite places to go are liberty market, IKEA and anywhere outside. she also likes car rides. claire has learned to love the water and likes swimming. she loves to smile, laugh and babble. she loves when people clap and cheer for her. she is very affectionate and loves being snuggled and kissed. last but certainly not least, claire adores her pacifier.

we are asking our family and friends to donate in honor of claire (and in lieu of birthday gifts) to a charity we support, blood:water mission. they are an amazing organization that builds wells in africa. you can read more about them on their website and also donate by clicking on the donate link on the site.

we’ll have lots of pictures to share soon of claire’s lemon:aid party! and lastly, thank you for supporting our family and for loving our little girl.