escape

so this week has been very strange with nate gone all week at scout camp, i feel like a giddy teenager excited for her boyfriend to come home tomorrow! i dont know if i have ever missed him this much. not sure what thats about ... emotion of saylors current challenges or just a better marriage. i have been thoroughly enjoying the kids and trying to spend individual time with them. i love holding saylor at night and cuddling. storie and i have had flower lessons and some good conversations, stock some reading time and some hugs. its been nice to not be working as hard as i normally do this time of year. i have 6 more events before i take time off but for the most part they are all designed and the office work is done so i am just focused on the actual events where usually i am designing and doing so much office work while working on events. its left me with much needed free time and for sure left me refreshed. so i have been escaping my beautiful life a bit and reading a lot. i read in waves usually and sometimes the waves last a long time and other times they are short rides. i just finished this book .....


my mom gave it to me for mothers day so thats how long i have had it. i started it that very day and for the next 6 weeks or so tortured myself with reading about a page a day, very dissatisfied and pretty certain i would not finish it. i thought perhaps my surfing session had ended, but for some reason i kept plugging along and finally at around page 150 it picked up a spark for me and i couldnt put it down after that. i really enjoyed it from there on out that is until the end. to sum it all up the end just ruined it for me .... dont want to give anything away but it was to predictable and just didnt finish right for me. it was ok in the end. not loving it but glad i read it. i am not usually i sci fi fan at all, i can see some of the men in my family loving stephenie meyers after this one.

so the i moved onto this one ...

i havent been to the library in ages and ages, i prefer the book store i suppose when really i should prefer the library. perhaps its the convenience and luxery of moms working there and bringing me home anything i might want that they have. so the kiddies went to the andersens for some fun and games and i decided to do a few needed errands and do at least 2 things i would not normally do on my freet ime. so the library and a trip to savers was what the night held for me. i got this book cause it was on the "staff picks" shelf and it drew my eye, when i read the back i felt anxiousness well up inside me and pondered whether it would be a good read for me or an emotionally bad read for me at this current time in my life. ultimately i decided it must be what i need. so i am about half way done ... i will let you know.

STOCK the ROCK

does the look on this kids face worry you? well its throwing me through some challenges thats for sure. boys are HARD! especially when there are 6 of them all together!

better late then never a little tribute to the little man in my life who just turned 7!

stock - thanks for being a rock, consistent and strong. for always being the first kid to say i love you and hug me, for being so boy yet so in touch with your emotions. for being a spitting image of your father in looks and behaviors, it reminds me of why i love you both so much. for lifting the heavy stuff, unloading the groceries, taking out the garbage, bringing it in, smelling like a boy, keeping your room a mess, complaining that your bored ... well all the good and the bad, i will take it all. i wouldnt want to live one day on this earth without you kid!

whats in the haps with saylor

JUly 18th saylor will undergo a planned VCMG and renal ultrasound. this will be a precursor to augmentation at primary childrens sometime in the fall. we realize that this invasive scary procedure really may be our only option as much as we would like otherwise, so we have decided to go forward with needed tests. we are still working through emotions, fears, concerns, and choices etc... some moments are good some not so good. but we are well.

saylor, the other kids and I went to the zoo today. she was amazing and walked i would say about 70% of it.

one thing that has really impressed me as we sort through all this, is to remember that i have feared this much before, i have been this scared, i have had to make this hard of a decision about her, and it has hurt this bad. its been a while though, its hard to remember feelings. for so many years all the surgeries we have been through have been so easy to decide upon. so clear cut, so practical and safe (well as safe as going under the knife can be i guess.) in the end i know we are capable with the helping of a loving father in heaven.

saylor update

many of you obrien family supporters have been waiting for an update with us on saylor's surgery at USC. let me explain a little for those of you that havent, and for those of you that have, so this all makes sense.

saylor really doesnt have much of a bladder, she needs augmentation. across the country the pediatric protocall for this is to use bowell tissue to augment the bladder. like any surgery this comes with downfalls. some of the risks included in this usual treatment surgery really swayed me to look elsewhere for another option. i found another potential option clear back in january in a doctor at wake forest in north carolina who led me to a collegue who was working with him on this other option at USC in LA. it basically consists of taking what bladder tissue is there and growing it in a lab and using grown DNA to augment the bladder. its still in very experimental stages and these two docs have been preparing to present to the FDA in hopes that they would approve a phase 3 study for this procedure. the medical conference with the FDA Over this was to be held in late may. so we decided to wait until then in hopes that we would at least know when this may be available. we sent saylors medical records and we were told she is a prime candidate and that they felt encouraged that the study would open in 2008 sometime and would be approved by the FDA and saylor would be rip roarin ready to go! the very few previous cases in phase 1&2 of been a little more than 50% successful. so we waited and waited and waited and waited. then the end of may came and went and here we are in mid june. after several emails to docs i finally received a phone call today with the news that the FDA did not approve things as they stood and they will be required to collect more data and do more paperwork and that he projected that phase 3 would not open until late spring of 09 if at all.

where does this leave us ... how do i even begin to explain the wurl wind in our minds, of questions and decisions we need to make. so for now we have no answers for you.....

designed to sell ........ or stay?

So nate and i mini remodeled the house for a couple of reasons, first is that i get bored fast or maybe i should say "we" do, it was time anyhow and there were some things we have been wanting to do, second is that we repetitively are told by agents showing our home that its "too dark" so we decided to brighten things up in the hopes that it might neutralize the pallette and appeal to more buyers. not that in this market and economy we arent being realistic about the possibility of it selling we are ... we arent betting on it! i would like to enjoy the newness for a bit anyhow. so here is some before and afters for your enjoyment!

house front before ... this is actually the better pic of the two but to show you the new stuff. we added shutters, we hate shutters, there very not us but for whatever reason utahns love shutters. what is it about shutters? last year the window boxes were a nice addition already in the before pic. we get told often the house is too boxy and needs rock. we are so sick of all the houses looking the same in this state. anyhow no money in the budget for that for the time being so this is what you get. also people either like or hate the mountain lot, we of course love it, it means the most amazing view of the whole valley! so this is after

we also have been wanting to add a bigger chandelier to the porch so this one that used to be inside moved out ... more on that later.




office before

after


living room before

after


fireplace family room view before

after


kitchen and eating area before




stair area with chandelier that we moved outside before

this is after with new chandelier that i scored on KSL for only $100! its HUGE! quiet the feet to get it up! i love it! its very bright!


entry way and the other smaller matching chandelier i also scored for $40 not as good of a deal, none the less a perfect fit for the most dark part of our house as we have been told. switching this light out for a bright bright chandelier and paint made such a big difference.

we only spent $250 between paint and my good finds. it looks as though we have new furniture i know but we dont, we just moved things around!

so tell us what you think .... unless of course you have nothing nice to say then its best to say nothing at all!

if you have read this far i suppose you deserve an update on Saylor & USC news .... still no news. good thing i was sicker than a dog last week and in the midst of remodeling so i was too sick or too busy to worry to much about it all. we shall see how i get through this week .... all i can say is we better has some sort of morsel of info by the end of the week! thanks again for all the support!

i know many of you are anxiously waiting with us for news from USC as to when saylor might be able to go get what we need done done! well no news yet ... sorry. hopefully this week! hang in there with us.

whats getting me through ...

so patience is not my virtue ... yet. I am trying to make it one but its hard. I dont like the unkown and as i anxiously await information from USC docs (that i know they have) i am fighting hard to be patient. our whole lives sort of hinge on this right now. we cant book work, or commit to anything fun or obligatory, we dont know if or when saylor will go to kindergarten, and all sorts of other reasons and things. Many of you have been anxious for an update that we promised this week and its coming .. I hope. so whats getting me through today ....


RAIN - oh how i am enjoying it today. it has me in the best of mood! odd considering i know. i love the rain, always have. it makes me feel cozy. this year has been the strangest year for weather! i am kind of liking it though! have not turned on the air conditioner yet at all nor the flower cooler, the room is cold enough. love having the windows open etc... it feels so fresh! i love that today for the most part i can sort of just chill. little bit of work but not much and a little bit of get the to do list done but not much. just a good rainy day!


this CD has been on replay all day ... it accentuates my mood. its one of my favs but i havent listened in some time i had gotten sick of it. it brings smiles today.


homemade hot caramel popcorn ... need i say more!


last but nowhere near least ... these beautiful spirits dwelling mostly at home today!