adrian took claire to the neuro appointment at barrow alone and it went well. he said he liked her neurologist, dr. ng, even more this visit than before, which is a comforting thing for us. he made no mention of the scary ATCH steroid injections as a treatment option for claire (phew!) and instead wants to try raising the doses of the two seizure meds (keppra and vigabatrin) that she is on currently.

if that makes no difference in the next couple weeks then we will try the ketogenic diet. it’s basically atkins to the EXTREME. she would have to start it in the hospital under watch of a dietitian, who would also train us on implementing the diet. many families see a great reduction in spasms on it so we have no problem giving it a try if recommended. it will be difficult to stick with- we’d even have to switch what wipes, lotions, shampoos, etc she uses but if it helps we are all for that. and if it doesn’t help then we have a couple more medications to try (which i am praying is not needed.) from here on out the new meds to try are more toxic to the body and have a lot more serious side effects than the tiredness, insomnia, irritability and spittiness that we are dealing with now. so in the next couple weeks we will just have a more sleepy, grumpy girl as we increase the dosages. but at least she is a sweet, cute, sleepy grumpy girl (see evidence below)

please keep praying that this will work for claire and that God would miraculously heal her brain. thank you again for all of your support, we love you guys.

it’s been a tough week because it is becoming more evident that the newest seizure medicine from the UK is not taking away the spasms. claire has a neurologist appt at barrow tuesday afternoon, so i am sure we will be talking about the next step. i am dreading it. so much so that adrian may have to take claire without me. i literally go into a panic just thinking about this. i don’t know why but i avoid all conversations about claire’s brain as much as i can. i do not even want to think about it, see pictures of it, hear more explanations, bad news, etc. it makes me feel like i am having a mental breakdown. i am not exaggerating in the slightest. i am petrified. adrian says that if it is too much for me that he can take her and have all those brain talks and just tell me what i need to know. he is so much better at explaining all of this to me than the doctors. i hate doctors. i don’t care if they are nice, or caring, or smart. they SUCK. he says that i take claire to so many doctors appts alone and so many therapy appts alone, that if skipping the neuro doctor will help me then that is what he wants to do. i love him so much. but i also don’t want him to be there alone either. i know it is hard for him too. at church this weekend, we talked about that even though life is uncertain, God is not. that the bible is not full of happy-ever-after, hunky dorey life stories. remembering that the hebrew nation waited on God for 400 years to have their prayer answered. that even when it feels like God is absent, not showing up in my situation- He is still there. that He often uses the biggest messes to do the most amazing things. and we know that in ALL things God works for the good of those who love Him. that He has the whole world, my world, claire’s world in His hands.
but my heart still asks why, i am still scared, i am still hurt, i am still jealous of my friends’ babies, i am still angry. yet beneath all of that, i am still waiting and i still believe.

i am sitting with my laptop listening to my fave mj song on itunes, pyt (we can make it right, hit the city lights)…crying. call me silly but michael jackson meant so much to me as a kid. i thought he was the bee’s knees, the ultimate cool, the cutest guy and i wanted to marry him. seriously. i had this poster of him in a yellow vest hanging on my bedroom wall as a 2nd grader and i kissed his face everyday. i used to dance around in my basement to the thriller album and tragically smashed it while twirling with my fairy princess wand. the little girl in me will always remember him as the mesmerizing, unbelievable talent that he was. goodbye michael.

one of my absolute favorite bands, david crowder band, has a new single from their upcoming album available for download on itunes. this makes my heart so happy. i am double the happiness because it also happens to be “how he loves” one of my absolute favorite worship songs at church. a song my mom loves to sing to claire. and a song that we most definitely will be singing at claire’s birthday celebration.

He is jealous for me,
Loves like a hurricane, I am a tree,
Bending beneath the weight of his wind and mercy.
When all of a sudden,
I am unaware of these afflictions eclipsed by glory,
And I realize just how beautiful You are,
And how great Your affections are for me.

And oh, how He loves us so,
Oh how He loves us,
How He loves us so.

We are His portion and He is our prize,
Drawn to redemption by the grace in His eyes,
If grace is an ocean, we’re all sinking.
So Heaven meets earth like a sloppy wet kiss,
And my heart turns violently inside of my chest,
I don’t have time to maintain these regrets,
When I think about, the way…

He loves us.

if you know me, you know that i LOVE to plan a party. and the fact that this party is my little girl’s first birthday makes it ten times more exciting than any party before. my head is a tornado of ideas and soon my hands will be sore from the amount of crafty things i will be creating but to me- it is pure bliss. here’s a little peek into my delightful madness:

- the colors are hot pink, bright orange and lime green. very punchy, very summery, very girly.

- i am taking it upon myself to create these flower pinwheels to display in metal buckets filled with gerber daisies. cute!

- i am also planning on hanging these paper flowers from the rafters of the park ramada.

- the food will be an all american bbq. that means skin-on hot dogs and buns from von hanson’s. no crappy grocery store wieners here, but authentic minnesota meat! (how cool is it that they have one lonely store out here in chandler?!) bbq beans and sides from our own joe’s real bbq, yum. and a few other dishes that i will put together.

- did i mention mini cupcakes yet? i’ve discovered that mini cupcakes are the WAY to go for parties. less mess, easier to eat and the silly skinny-mini’s who say “i don’t want dessert” can’t even resist a tiny bite of cake perfection. come on!

- there will be singing. yep. our good friend and church worship pastor, stephen cole, is helping us make the evening extra special by leading us in song. they will be songs that celebrate the gift God has given us in claire, reflect on the journey this has been in our lives and ultimately tell Him how much we love Him. and if you are a guest and don’t sing? expect to be STRUCK DOWN by lightening. just kidding. but really i might give you the evil eye and you DO NOT want to chance that.

so there are some of my fantabulous plans. i cannot wait to have our close friends and family there to celebrate claire and what an amazing little miracle she is in this world.

side note: i need to do more posts about random stuff in my life. i’ve realized that our family blog has become nothing but updates on outings/medical stuff and i have so much more to share than that! i miss using it as my creative outlet to share ideas and ponder new things. my goal is to change that and focus more on some of the little loves in my life. like cooking, baking, crafting, reading, music, shopping, the list goes on and on…

it’s lunchtime and i don’t feel like a sandwich. or a salad. or fast food. years ago my mom gave me this super easy, healthy and light lunch idea and i crave it. here’s the lowdown- arrange about 8 crackers on a plate (i use milton’s herb and garlic rounds.) then thinly slice up a roma tomato (or whatever kind you have around.) place the tomato slice on top of the crackers. sprinkle with shaved or shredded (NOT grated) parmesan cheese (i get the kind in the little plastic tub for quick use.) season the crackers with fresh cracked pepper and italian seasoning. drizzle a wee bit of balsamic over the crackers. microwave for about a minute and enjoy! they are fresh, zesty and filling. yummy!

one of my very bestest friends since age 12 was here for the week. emily. sometimes if i think about how she moved back to texas 5 years ago, i still cry. (not trying to guilt trip you em!) but really, i miss her. she is quiet strength, comforting kindness and side splitting silly all rolled into one beautiful woman. my life would not be the same without her. since claire has arrived, i haven’t been able to have as many long phone chats with her and it makes me sad. i seriously need to schedule time for that because she is so important to me. anyway,  emily and claire got to meet and snuggle for the first time. hooray! emily is a natural with babies and will make an amazing mom one day. and we discovered they have the exact same hair color. so pretty!

thanks to two very special people (you know who you are) the venders enjoyed a fabulous week in minnesota. we are so blessed to have generous loved ones in our lives that helped us make the trek to my home state. i love minnesota. and i miss it dearly. everytime i visit i dream of living there and raising my family in a land where kids run between each other’s lawns, neighbors know your name and there’s green. green everywhere. and words like supper, pop, uf-da and hot dish are not foreign comfy, familiar minnesota, i miss you already.

claire was an angel on the plane rides. totally awake the whole time there and totally asleep the whole time back. but quiet and her sweet self both times. she hung out on her boppy pillow in my lap the entire flight.

one of of the highlights of the trip was introducing claire to all of her relatives that she had yet to meet. and one of those most important people was my uncle brad. he will now be known as the claire whisperer since he lulled our little girl into a sleepy peaceful rest everytime they cuddled.

claire also got to meet her great great aunt elaine (who her middle name is after.) i think they had an instant bond.

we also took a picture of four generation of stettler women. my grandma bonnie, my mom lisa, me and claire.

here’s claire with her great grandparents that she met for the first time.

and here’s all the evjen gang that ventured up from phoenix. (we missed you alex!!)

unfortunately, i forgot to take pictures many times so i missed a lot of things. silly mommy brain. but there was lots of visiting with my grandma nancy too, an evjen cousins reunion, an evening with our friends the luncefords and panera bread co visits. yum. oh and the last half of our trip was welcomed by rain, clouds and record low temps for june. brrr, it was sooo cold. like january in phoenix. i was not prepared.

claire was exceptionally great the first four days up in the twin cities. she was sleeping all night, awake all day and a happy girl. rochester must not have agreed with her because she returned to her bad habits of sleeping all day and awake all night being fussy. mommy and daddy did not sleep much then. i think she has these times when her teething is really bugging her. i can’t figure out what else it would be.

and i am starting to accept that with claire there are good days and not so good days but they are still DAYS that i get to spend with my beautiful daughter. and there is such joy in that.

i have been singing that silly presidents of the united states of america ode to peaches for the last week since i was so excited about picking them at schnepf farms. does anyone else remember that song? movin to the country, gonna eat a lot of peaches. ugh. i will never get it out of my head.

anyway, my mom (and claire of course) accompanied me out to the big ol farm in queen creek, where we picked peaches in the breezy sun, got eaten by mosquitoes and peed on by some stray farm dog. can you believe i am speaking of desert-y, barren phoenix? in fact, the guy ahead of us picked over 100 pounds of peaches and was from florida. he said they were better than theirs. yup. even better was you could eat all you wanted in the orchard for free, and luckily we brought wipes because these are the juiciest, sweetest peaches i have ever tasted. perfect. here’s some pictures from our day:

my mom is so pretty.

yum. and they are organic, the farm has never used pesticides in 45 years.

did i mention my mom is silly?

we had to document claire’s first farm visit even though she slept through it all!

the sleepy girl. so cute. sweeter than any peach there.

a few things to keep you all in the loop-

1. claire had her follow up barium swallow study at phoenix children’s hospital this week and (drumroll please) … her swallow is 100% normal. she can even swallow ultra thin liquids like water normally. this doesn’t mean she doesn’t gag anymore (we are still trying to find out why she does that sometimes) but it does mean that her muscles are strong and there are no signs of anything unsafe in the way her body operates during a swallow. thank you Jesus!

2. we got the new seizure med from the UK in for claire’s infantile spasms. it will be a bit before we know if it works or not so please continue to pray for this.

3. claire is now 10 months old! wow wow wow. i am already starting to plan her one year bash and needless to say i know it will be extra special!

4. some other things you can pray for: our finances, we have HUGE medical bills and adrian recently lost a big customer so things have been pretty tight for us lately. we are trying to make budget cuts and adrian is finding some new projects but it is still a little rough for us right now. which brings me to the next thing, our trip to MN. we really want to take claire to MN for the big evjen family reunion and to see all of her family she has yet to meet but with our budget, it looks pretty unlikely. please pray that we would find a way to be able to see our family, we are even considering driving since the cost of gas would be cheaper than flying and renting a car. one more thing is we have claire’s long term care interview this afternoon. please pray that she would be approved. it would open a new avenue for services and supports for her. and it is also something that the state cannot take away due to budget cuts. thanks guys, we love you all!