sorry for the looong blogging absence. it’s been a pretty hectic month, some good and some bad. claire is continuing to grow and get prettier every day. she is now 28 inches long and 19 lbs 13 oz! uf-da! she is still eating all by herself and we have gone down to 4 feedings a day since she is able to take a bigger bottle and solid food. it’s a challenge to sometimes follow a schedule since she is very sleepy somedays and likes to stay awake at night but we are working on it. her favorite foods are spinach, sweet potatoes and mangoes. she still loves her pacifier and now has a favorite maraca to play with thanks to her nana lisa. her hair is getting very long and we are able to clip her bangs to the side with a barrette. she also has started cooing a lot more and likes to say “ooooo” and “gaa.” as for the hard news, we went to barrow neurological institute a couple weeks ago and she was diagnosed with Infantile Spasms. it is not what we wanted to hear. it usually means that the risk for mental and motor retardation is high. the spasm episodes typically last until age 2 and then a different form of epilepsy takes over.  please join us in praying for claire’s healing and development. we know the medical odds are stacked against her but we believe in a big God who can do big things. we know that He uses ALL things for good. and we trust that He is protecting our claire bear and bringing us through these struggles for an amazing reason. i won’t pretend, many days are very difficult and overwhelming and sometimes i want to just give up. but i know deep down inside me the truth. the truth that God loves our little family more than we can imagine and created our baby girl just as she is. it may not be the average, normal scenario that i dreamed of but it is His perfect plan for our lives and i am so thankful for the gift of claire.

it’s been two weeks now since we removed claire’s feeding tube and things couldn’t be going better! she is doing above and beyond what she needs to,  is trying all sorts of new baby foods and getting ready to chomp on something with those itty bitty teeth. of course today her tummy is acting up, i’m sure it’s some new food that she is not liking so it will be only formula and oatmeal until the gassy baby feels better. but overall we are unbelievably impressed with our claire bear. we can’t wait to see what she will learn next.

my heart is confident in you, O God; my heart is confident. no wonder i can sing your praises! psalm 57:7

claire has the sweetest, most craft-tastic auntie amber. this week a special little package arrived and inside was the cutest crocheted cap i have ever seen.

the flower is interchangeable to match miss claire’s outfits. perfection. you know how i love hair accessories for my baby girl! if auntie amber was here right now, claire would give her a big slobbery kiss and then probably start crying. why you ask? because as i previously mentioned, the pesky tooth fairy has come to visit the vender household. claire does not like her one bit! especially at night. poor claire. i wish she knew how to hold things to her mouth so a chew toy would offer some relief. currently, the only thing she wants is to chomp on her pacifier like a baby piranha. here’s proof:

anyway, visit amber’s etsy shop and buy lots of goodies!!

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!

last weekend, our little family (minus lily) traveled to las vegas to visit our newest family member, alyssa hope. what a cutie! i can already envision shopping trips with tia nicky and prima claire in her future!

we had a wonderful road trip, claire did awesome with her bottle and was an angel in the car and hotel room. she was a bit cranky at nights but that can be attributed to two little teeth popping up on the bottom of her mouth! we only wish rich and ivana lived closer so we could spend more time together. i remember all the time i spent with my cousins growing up and i am so thankful claire now has two special cousins in her life. here’s the troublemakers together:

it isn’t easy getting three little kids to pose for you, that’s for sure! big hug and kiss to richie and alyssa, we miss you guys already!

here’s my pretty shamrock. i’ve been staring at her napping and thought i’d share my view.

in case you didn’t yet know, it’s been one week without the feeding tube! i still cannot stop looking at her beautiful face and thanking God for this one answered prayer. she is doing so well eating on her own and i only hope it continues. on march 31st, we are going to barrow neurological center to get a second opinion on her seizure treatment. please keep praying with us that we find the right doctor and medication to take the seizures away forever.

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.

we spent last weekend up north in sedona with ryan and alex at her parent’s vacation home. it was claire’s first trip, which we were a little worried about but overall it went extremely well. it was a super relaxing couple of days and you can’t beat the awesome views from the vacation home. they are indescribable. it is such a blessing to live in such a beautiful state. sometimes i forget how versatile arizona is. we have mountains, deserts, scorching heat, snowy ski slopes, forests and incomparable red rocks all within a few hours. if only we had the beach too! we really enjoy spending time with ry and alex and are so thankful that claire has such an amazing aunt and uncle to love her.

over valentine’s weekend, adrian took claire, lily and me on a picnic at the farm at south mountain. almost 6 years ago, adrian and i tied the knot there under the canopy of pecan trees as the sun dropped behind our gorgeous mountains. just sitting there with our beautiful baby girl and lovable puppy was a amazing reflection on how fast times passes and what huge changes life brings. it was a great day. claire was awake and happy the whole time, i fed her the bottle for the first time in public and she did a good job. lily was an angel as always and had fun chewing on all the sticks lying around. if you live in the phoenix area and have never visited the farm, i beg you to add it to your schedule. it is a true gem in our desert and a wonderful place for fresh, organic, local food as well.

super bowl sunday is here! we are so excited in arizona that our long suffering cardinals are poised to win it all. did you know that their drought is outmatched only by the chicago cubs? we may not have had any crazy curses from goats or anything but it’s about time for the cards! we were out running errands yesterday and it was crazy seeing the majority of people decked out in their red and flags flying from their cars. it almost brought a tear to my eye. i am also a devoted mn vikings fan (not to worry minnesota family, i haven’t given up on them either) but adrian has been a steadfast cardinals man since birth and i am pumped to cheer on the hometeam. isn’t football the best? i hope the celebration of the cardinals victory lasts all the way into this upcoming august so life without football will not feel too long! and did you even have to ask my prediction? CARDS WIN!!! and if you don’t believe me then you will have to live with the fact that your disbelief is causing little claire to cry. here’s the evidence:

shame on you! now turn that frown around by joining with us.

GO CARDINALS!!!!