stocks biopsy results ...

lets be honest ... nobody wants to say the C word including us! and we kind of havent. we really wanted to keep this situation calm. partly because thats how we felt. stocks results came in today and he is cancer free and also free of the many other things they tested for. he simply has reflux. its not caused by some bigger demon of a problem. so medication is the only thing he needs for now. we do still have to wait for the PH test probe results but because i was the one recording them i already know they were relatively normal so i think we are in the clear.

i feel very grateful for the opportunity to be who i am, and to be the mother of 3 kids who have been called to do so much more than most kids do. i am grateful for this experience and the things it taught me, and what it taught stockton. i can only imagine the priceless ness of it all.

vote 4 saylor

ok calling all you all! so the photog that has followed saylor a little here and there is having a vote for best pic of 08 contest on her blog. you can vote once a day until feb 1st at midnight. rules are posted on her blog post and one of the pics to choose from is of saylor. so go vote! thank you davina! and dont just vote for saylor if you dont think its the best pic, vote for the best!

follow this LINK to vote

stocktons PCMC experience

this was just a strange day, so unlike a typical day at PCMC. the only way i can describe it ..... it felt so wrong. i know strange. it felt wrong in such a good way!

last night stock got a blessing from nate and i will share that throughout this ordeal with him we have all been pretty mild and calm. i have not felt much alarm within my motherly instinctive heart and have only had a few moments of thought of panic, but not real panic. stock has also been so calm, and confident. no fear. and his blessing confirmed that the pathway of not normal health is not his to journey to take.

we had a great day, it was kind of more a day of stock and i spending time together alone. there was no crying or fussing or even anxiety. it was just do what you have to. a sort of come what may and love it spirit. all the docs and nurses adored him, thought he was just so handsome and strong looking. i think they found me a bit of an oddity for those that didnt already know me! how strange to have a seemingly unaffected mom in the OR prep environment. a far cry from the last time i was there with saylor! the anesthesiologist let me go with her to the OR with stock and watch her put him to sleep. when we entered the room i knew everyone in there! haha! they all wanted to know how the girls were and especially saylor! then dr Jackson walked in and wanted to know how saylor was. it was all so monty python. then they put him to sleep and i kissed him and left. i barely had enough time to grab a bite to eat, call nate, and spend a few moments entertained by the huge hispanic family taking up half the waiting room all there for one kid, before dr j walked in. he handed me these pics ...



all of the inside of my boy's digestive system and might i say healthy insides. dr j was even pleasantly surprised and expected more damage then he saw. he said things look great. he biopsied anyway and wants the data off the chip but said based on the scope thinks he may be ok with just medicinal treatment but cant say for sure till the data is back etc...

the chip is proving to be a bit more work then i anticipated. i thought it just transmitted data back to them, but noooo it transmits data back to a very pricey machine that is now in my posession that must stay within two feet of him at all times in the next 24 hours that i must, must, must record the data off of every hour. ohhhhhh .... hmmmmm. not what i expected. so no wrestling or skool till this 48 hours is up! otherwise he is doing well! a little vommiting from anesthesia but otherwise doing well.

kind of a funny thing when you know most of the other patients surgeons walking into the waiting area and they all want to know what your doing there! really today has gone rather smoothly. almost too smooth and pleasant. what a tough kid i have! i am really rather confident that he will be just fine!

quick update

i turned another year wiser and older last sat. yipeee! i did it in richfield utah watching my son wrestle (not the best tournament either). saylor is holding steady and stable. stockton goes in for his pre surgery surgery tomorrow. storie is great and rockin the english saddle and violin. i am wishing i could go board and that i was reflectively skinnier. i have also wondered what of all the mascara's in the commericials latley is the best. i finished my BYU nutrition course with an A. only a bazillion more nearly impossible A's to aquire. thats all i have to say about that.

you may now exit the ride

i have postponed this post a ways until i felt safe to say that at least for now i think we are off the ride. saylor has gone a few days without attack. not to say she couldnt flair again but this is the longest since the 31st that she has gone. it has been a welcome break and she seems to be back to her regular self. now if we could only keep her that way at least until stocks procedure is done!


last sat we went to this crazy realistic journey back in time. my parents were generous enough to gift this extravaganza to us and we had a great time, especially saylor who like always was scared at first but liked it the most in the end.

other fun things .... well we are just trying to live life one day at a time. last night i did go out with a friend to an unusual spot for me. we headed to a club, show thing that was part of the sundance film festival to hob knob with the supposid stars and hang out with a few comedians my friend knows. really i went as a favor but ended up knowing a lot of people there and had a great time hanging out with some old friends and some new ones too! met michael B and a few other comics, watched my good freind david sing, hung out with his lovely wife who is also a great friend of mine, valerie, and saw an old friend that i havent seen a few years sam who actually was producing the show, kind of funny!

this week entails wrestling practice, regular every day junk and a tournament this weekend, on my b-day! thats right its my party and i will cry if i want too!

music for my cleaning amy

this is my friend amy. She has been a HUGE support to me. but in the most littliest ways, like texting, prayers, and bags of caramels. by little means come great things. i know she cleans to my blog music, i have to admit i really like that someone else thinks i have great taste in music, enough that they clean to it! so i added a few songs to my playlist today .... just for her! love you amy, keep cleaning!

small update. saylor is doing well today. we have had a good 30 hours or so without attacks. not sure what this means. in the past we have had breaks like this here and there only to naievly think we are done when another attack hits. so we are just planning on another one coming and i guess will be pleasantly surprised if it doesnt. she went to school today for an hour. it was strange after a full month off. i suddenly was back in that place of vulnerability for her. she is so small amongst her normal size peers. but for now things are stopped on the roller coaster track. we will see if we really get to get off the ride soon enough i suppose.

stock is scheduled for procedure #1 on the 27th with dr J.

and yet ... for real

its early and i have had little to no sleep. sorry for the drunkeness post. i cant help but reflect upon our all night battle with stomach pain after a complete clean out, so bad she was vommiting again. everything deep inside of me says they are wrong, they have got it wrong, they dont know whats wrong with her. but yet they told me it would get worse before better, so is this the worse? and they told me to stick this out several weeks and and hinted sort of at the mood of we dont want to see this until you have given this treatment a real chance. so what is there left for my soul to do but watch her suffer? its a roller coaster of hours of horrificness and well normal hours.

we have decided to keep a very documented journal. and we have also decided to pull her out of school on official medical leave. it became very apparant to me last night that this wont resolve anytime in the next couple of weeks and that school is not an option right now. she has not attended since before the christmas break so she has already missed a week and a half so thats it, getting yanked.

a curious kind of update

So here it is folks, think (THINK) we have all this craziness worked out ...

so mondays apts went better then i expected but i think i was pretty geared up for the worst. so lets get stocks case out of the way ... dr J explained there are lots and lots of reasons that kids have reflux this bad. most people just think its some sensitivity to acidity in foods but its usually caused by something. something from a food allergy, anatomically incorrect bodily tissue, even cancer. so stock needs a small procedure that will include a more thorough scope, a biopsy, and a transmitter placed to collect valuable data. after about a week or so we will have the results and will be able to determine how to treat his reflux most appropriatly. we think this will take place in the next two weeks, still need to work out some scheduling stuff.

on to saylor. after all this testing the only thing we can conclude is that the part of her small intestine that was operated on is chyme challenged. meaning it doesnt contract and push digestion like it should. the malfunction is causing all sorts of problems and pain. this will require a complete digestive clean out (miserable!) initially and then every weekend there after for several months. and some medication consistency in between. we started clean out last night and sure enough she isnt feeling well and either am i. but if this is what i have to do, then i will do it. i can only pray that they are right and this will cure this problem for her. after some time we will adjust the dosage on the treatments and ween her to see if her bowell will pick back up and start to work the way it should, the way it did prior to surgery.

i feel relieved to have some answers (i think) and have SOME organization to the chaos. now i just need to move onto all the other life things that i have neglected ... thank you for all the prayers, fasting, support, love, and friendship! we still need it!

a rare bread

Every once in a while we come into association with a doctor who we think is actually what a doc should be, they are so rare however that we call them a rare bread. friday resulted in one such meeting.

at clinic the SB team determined that saylor needed to see a GI specialist. I knew this might be coming and it greatly concerned me considering that is just who stock needs to see and i was having a difficult time getting an apt in the forseeable future. Saylor's bladder surgeon called and got the GI doc to see her right after SB clinic so we headed to his office to proceed in long discussion and retelling of the last few weeks of events. we came up with a plan as to how to proceed to discover the culprit behind her attacks. it felt akward as she was doing well that day. nate and i continued to feel rather crazy and emotional about all of this. he was late for surgery because of us so he sort of rushed off after but was so nice. his secretary thought he wanted the test done that day (he wanted it soon but it didnt have to be that day) so she scheduled it that way and nate and i took it, afterall we have wanted all along to get this solved we have done so much whinning (so to speak) so nate cancelled his scout campout and we settled into primary childrens, we knew she would be admitted for the test. (we also told him about stock and got an apt for him on monday.)

we entered the test with the tech telling us this is probably the worst test to go through that they do there. great we think. and then they go onto say that they mostly do it on teens and that they havent done it on a 5 year old so she may need sedation. so then we go through a round of tape to get through to get her some sedation. after talking to dr jackson who is surprised she is there not knowing she is doing the test today. (he went home right after surgery) he says we should reschedule when we can sedate and he can be there. we are thinking well ok we cancelled the campout for nothing. i talked to him on the phone for a minute when he suddenly just says nevermind she needs it done i will come back in. i insisited that we did not want to inconvenience him and he insisted that he come in. so he wrote for sedation and we began the process.

make a long few hours into a short version, she was doped up with IV versaid and lots of ketamine and yet still she was not out of it and screamed and moved the whole time. it felt like we were torturing her and we didnt know what for? it sort of did not make sense and both nate and i were very emotional as well. it was so difficult with the drugs on board i cant imagine what it would have been otherwise. the test did not yield any results that helped us in any way. dr jackson considered keeping her at one point for a go lightly clean out but after the test determined that it wasnt needed. still no closer to answers and all so exhausted he sent us home.

here is what was astounding. he was soooo ... not doctor like throughout all of it. how can i describe this, there is this usual demeanor. he does not have it. so kind and willing to do what we needed and so sympathetic to what we were suffering. telling us over and over i am so sorry. very understanding. here it was the weekend and we were headed home to what i dreaded to be more problems without a way to get any real help from anyone while they take there leisure time. but no he could almost see into my mind and offered up his personal cell so that we would have it should a problem arise over the weekend. this was the very first time he had seen saylor. i was astounded and so comforted. have we used the number? no. but its there. it feels so good. he also gave us straight through tickets for xray to hopefully capture on xray an actual attack.

most of sat she felt pretty good, exhausted and scared but she felt well. we had a good day and good evening. i actually started to think perhaps what we have gone through was not for saylor it was for us, we needed to learn something. this left me in deep reflection over the last few weeks events and also really sad. i hoped that the worst was behind us and somehow the attacks would not return. to my dismay last night at around 2 am the attacks ugly head reared and came back. i went to the hospital at 3 am for that emergency xray. i still do not know the results of it. nate and i felt like we should not bother dr J, afterall we would see him monday and the attack had gone just like it came. we have been doing this for weeks and weeks now so we can do it a little longer.

so thats where things stand. i still feel serious anxiety about the lack of answers and the continueing of symptoms but i feel a lot more comfortable about who is handling this. i also just feel worn down, just going through the motions. not entirely thinking the way i would like to and unsure of when i will think that way again. and so it is, we go on.

so just like the song says should i give up or just keep chasing pavements?

snowed

how do i eloquently describe the beauty and disaster of snow in one sentence ... for now i cant i am spent. but its a beautiful mess. heavy, wet, wont stop. this is what utah pretty much looks like and unfortunately i am not out boarding and enjoying it. its just not afforded me that luxery this season. i feel snowed in as well, emotionally speaking. we still have no answers on saylor's condition and though we had a good long 40 hour or so interuption she has begun and episode again. the pediatrician thinks her docs at PCMC should take over, they think her pediatrician should address it. No one has answers and no one seems like they want to conquer this mystique. PCMC at best has given me a "you should come to clinic on friday" well ok we will watch her suffer for several more days all the while putting her at risk to this unknown culprit, doing damage. then we will come up so you can tell us you still dont have any answers and that you want to run more tests the following week. hmmmm ..... not good enough is all i can say. her pediatrician is doing all he can. running more labs today. but he seems at a loss as well and feels this complex problem in conjunction with her medical history should be addressed by PCMC. i feel crazy!!!!!! we also have an update on stock. we saw the ent today and after consult with some of his collegues and a review of his swallow study they agree that they can only treat the effects of the actual condition and now that thats under control with the severity of the condition and his age that he really needs to be seen by a GI surgeon at PCMC. just what i wanted to hear today.... and so we become more like the curious case of the snowed in obrien children.

the low down on the curious case of saylor jae

So i know many of you are anxiously waiting, wondering. i dont feel much like posting to be honest. i feel tired and discouraged but it would be unfair to not share with those that hold us up.

so the weekend of thanksgiving break saylor came down with what we thought was stomach flu. at the time it seemed just a huge blessing that no one else in our family joined her in the adventure. it came with all its miserable glory and went in about 24 hours.

fast forward to the weekend before xmas about 3 weeks later. she gets it again. has the same symptoms the same pain. it comes in like a lion. this time lasts a little longer. nate was out of town buffalo hunting and i was pretty distraught trying to figure out how she could possibly aquire such a bug twice in such a short time. after about 36 hours it left her and she slowly emerged into her real self a few days later. yet again no one in our family joined her in sickness. weird for stomach flu right?

fast forward again to new years eve when she starts saying she is cold and that her stomach hurts, starts rocking and crying in pain and asks for a bowl to throw up in. WHAT? i think. so we decide its time to seek medical attention that something is wrong beyond that of a stomach bug. but we also feel the dread of what this means, the unpractical way of approaching docs who tend to not really listen and chock things up to the easiest or first thing that comes to mind. the process for which resolving problems on a holiday evening dooms us too. the dreaded ER. we called our neighbor a uvrmc trauma surgeon who initially felt that she was constipated despite my insistence that she had pooped several times that day and that certainly could not be the culprit, she has the opposite problem if anything. he then said he would come over and look at her and based on the location of pain he advised us to go to the ER with a suspicion of bowell obstruction. thankfully he called ahead and made this process a much more pleasant one that we normally experience. after some xrays an obstruction was ruled out and we were sent home with "a stomach virus" and some pain meds in case her mysterious pains came back, cause you see at this point she is happy and appears healthy. of course. its just how it works right.

thursday morning, terrible night. pains and vommiting start back up. our neighbor insists she is contsipated and we reluctantly give her diareah meds so we can eliminate this as a culprit. we struggle to get through a rough day of pain. realizing quickly that she is not constipated when the pain persists through the diareah that we have now intentionally given her. nate and i rock back and forth in bed with her all day frustrated and concerned.

friday morning comes and we have had it. its a holiday weekend and no SB docs are accessible. we decide to go ahead and call the pediatrician who orders labs and a urine analysis. of course as soon as we go out and about to get labs she gets mysteriously better. she has a good afternoon but the labs come back all over the place with several things high and low. urine analyis is suspicious but not necessarily infection, as it always is with her weird bowell urine coming straight out of her cath. friday night she starts up again.

after a long night and morning we head into the doc to have her examined and decide what to do. upon arrival she starts to perk up and get better again. he still orders another set of labs and an ultrasound. the ultrasound rules out kidney stones or gall stones which could make sense of the coming and going. and it discovers only one abnormal thing a small pocket of free fluid in her abdomen which the radiologists deams post surgical and nothing to worry about. me i am not so sure about that. so here we are after all this exhausted and even more perplexed. her pediatrician starts her antibiotics to be safe and cover the potential UTI and says we need to call her pediatric surgeon at pcmc and get into him as soon as possible. he essentially tells us to hold tight through the remainder of the weekend. the evening rolls around and she starts once again. she suddenly says to me "i want to be blessed." not to say we were avoiding this she had already had a blessing during the second round of all this. so nate and the bishop gave her a blessing. it was strong and powerful. she went to bed pretty peacefully but woke again at 3am with the same symptoms.

she was sick until around 11-12 when she started to pull out of it again and now its sunday night and she has had many hours of wellness. we sit on pins and needles waiting for her to relapse or be done with this strange illness. we have talked about many possiblities and some are bad, some not so bad. yet we still do not know entirely what the culprit of all this has been. we remain discouraged and perplexed but hope that this is resolved in some strange way. we have now met her out of pocket for the 09 year. we arent sure how to handle all the compounding medical debt. we knew we would just didnt think it would happen in the first 3 days of the year.

so thats where things are .... for now. with saylor.

pray for saylor, because we know it works and we need it

We have been busy this week ringing in the new year our style. saylor has been in and out of the hospital since wed evening. its complicated to explain just what is going on, we ourselves are rather perplexfully confused so we wont confuse you. just please pray for her and us that we will get some answers today and that her pain will subside for good this time. our laptop is broken so there will be no updates from the hospital unless i can figure out how to do it on my phone.