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-

1. drumroll please…my littlest brother matthew and his girlfriend yasmine are engaged to be married!
2. 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.
3. 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!
4. 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!!
5. 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.

food time is now much more fun with a high chair! previously we used claire’s feeding therapy chair for meals but she was demanding a normal, more stylish dining option (i know, she’s a diva!) so we happily obliged. it just feels better to be in a big girl chair like all the other kids use and claire looks so very pretty in it too! and she can’t resist holding those little hands onto the tray, such a cutie!

i wanted to give a quick update on what is going on with the early intervention services in our state. the day before claire’s therapies were to be cut, a judge issued an injunction and stopped the state from ending services to babies! our DDD coordinator says that therapies will continue until they hear otherwise. can i get an AMEN?! in the meantime, we are applying for federal long term care funding for claire since those programs are more protected than the state programs. it is difficult for babies to qualify but we are hopeful that with claire’s diagnosis, she will be accepted. so anyway, a big hooray for the judge who helped all the families and babies who benefit from early intervention therapies! i am so happy to see evidence of people in power who really have a heart for the citizens they serve and do what is right! i’ll try to keep you all updated as this situation progresses and rally the troops if needed!

first the good news, claire finished her entire bottle for the first time ever! she has been making great progress eating by herself and we are very optimistic that she will one day be free of the icky feeding tube. she is still loving solid foods as well and is a huge fan of peas. go claire!

the bad news is what is going on in our state. arizona has somehow decided that is acceptable to cut funding for the early intervention program. what this means is claire’s feeding, physical and vision therapies will no longer be paid for. i am in utter shock that of all things the state could cut back on, they deemed innocent babies with disabilities as not worth the cost. it makes no sense fiscally or morally. early intervention helps many babies overcome delays so that they can avoid special education and even more costly services as they age. by cutting these necessary programs, the state is only creating a situation where older children will need more state services b/c they didn’t get the help they needed during the most important beginning stages of life. morally i am at a loss of even what to say. the fact that lawmakers in our current society could have such a disregard for the most vulnerable people in our state is pure horror to me. some people may ask “well what did parents do before the state paid for these things?’ that just shows complete ignorance to the history of how people with disabilities have been treated in our country. they used to TAKE your baby, send them away to an INSTITUTION and tell you to FORGET about them. we pay taxes just like any other family so your kids can go to public schools, you can ride a nice light rail system to work and if you get injured there is money there to help support your family. in the same way, babies with disabilities NEED therapies to have any chance at acquiring skills that most parents take for granted. i am not complaining that my baby may not get the cream of the crop education so she can become some scholar here. i am pleading for the chance for my BABY to learn to hold her own head, eat on her own, and use her eyesight for goodness sake. the fact that the state now thinks those kind of basic life skills are not worth it for my child to attain sickens me beyond belief. i cannot even imagine how a single mom on a low income with three other kids at home would even survive having therapy taken away from her baby with special needs. adrian and i have the opportunity to have a good income, have me stay at home and have the knowledge to implement therapy interventions with claire on our own if there is no way to keep paying her therapists for their work. i am so thankful for that but i am crying with the thousands of families who do not have those opportunities. i am sending my letter to our state representative to tell them of my outrage and have my voice heard. i encourage you to do the same.

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!

guess what? the phoenix suns season starts tonight against our arch-enemies, the icky spurs. get ready for hack a shaq, ginobli flops and tim duncan whining about every foul call! one thing i will be so happy not to see? robert horry and his nasty tactics on the court, bye bye horry! i think he retired or something. at least steve nash won’t be thrown into anything this game! oh how i missed nash, stat, the brazilian blur and especially raja. see, he isn’t so scary in this picture is he? just don’t get him mad! and now the game is about to start, bring it on spurs!