family pic

family pic

Wednesday, March 30, 2011

the short of it ALL

So really i have been a horrible blogger. So horrible in fact that it takes around 10min to remember my login & password and get into this blog to blog. How ridiculous is that? I feel really bad because i know that people at least USED to read my blog and that it every once in a while did something good for someone, i dont want to loose that. My uncle sent me a message a few weeks back begging me to not stop blogging, and then i got another email with the same request from a friend. its not that i dont want to peeps ... its just that well ... its just so many things. A lot has occured in the last month or so. Lots of hard things, lots of blessings. And its overwhelming to think of how to best catch you up ... i dont want to bore you with mounds of text so here is the short of it all!

starting with stock & nate really seems easiest actually so we will start there.

stock has been doing not much more then wrestling wrestling wrestling. which means thats what nate has been doing too. This is stock next to his buddy Cade who both took a championship at intermountain warriors ultimate challenge. We have taken a few other championships as well including Utah state greco. We have lost some too ... wisconsin didnt pay off the way we had wanted, in fact that may have been the hardest weekend the entire family has had in a long time! {more on that later}. It seems they are somewhere different every weekend, all over the country. and practice every night during the week. i could now go off on a tangent about how i cant bear anymore of this schedule and my thoughts on the situation but ill spare you the grief and boredom. for now, this is what stock wants and what makes him happy. He has been pretty healthy, just super busy.... which brings me to another topic ...

PARENT HOMEWORK - what is this about? i feel like i am doing a huge time consuming and costly project every week for one kid or another. stock just finished a BIG one and not even two days later another came home! urg! Maybe this is just part of being a good parent and keeping us involved with our kids, but i want to dictate how i am involved and what i do with them!

So as for the "other" parent in my kids life. He is doing great, super busy with wrestling and working for USA wrestling. He also is busy with construction jobs, and somehow has also made the time to take saylor skiing as of late. I often times forget how stressful his life is. Because he takes it all in stride and hardly seems stressed in the least bit. he handles things so well. But so much has been going on and he really is just the rock of the family. im looking forward to not one but two weekends with him and stock with us girls! i can imagine it will restore me!

Ok onto the girls ...

Saylor, the hard and lengthy most wanted updated. But again i am gonna cut out the bulk and work on the jist of it all. a few weeks back saylor got a bad cold. she had been running a fever for a good few days, dangerous for her so we took her in. We were basically told she had RSV and was stable enough to be at home and ride it out. As the week progressed she did get slightly better actually but her fever never once subsided during the week. thur came and nate and stock left for wisconsin, just after their departure after a great nights sleep she woke up and started vommiting. then she promptly went back to sleep. and it became very clear over the next few hours that something was very wrong. she was throwing up but not in a stomach flu way and i couldnt keep her awake. the dread just filled me to the limit, nate is gone and of course turn for the worst. The hard part i was battling the brutality of her horrible cold myself and was miserable as well. So i dragged her back to a ped who got on the phone with primaries and determined that she likely had a severe bladder infection and that was what was causing all this. so onto antibiotics but something still did not feel right. as the day progressed she got worse and her behavior became more strange. by evening i was panicked, i called PCMC and was told to come right up. I knew it was coming i could feel it and was pretty emotionaly prepared and had been given strength through the previous hours to get what needed to be done done.

I have to just insert here a little note about PCMC ER in the middle of the night. Kind of a joke. Let me just say in short this is what i see when i go there, a lot of people with kids who appear to be normal happy healthy kids with no "special" problems and a baby who had been brought in by irresponsible parents crawling all over the er waiting room and the parents could not have cared less. NO WONDER your kids sick! Then there was us, looking miserable and horribly sick, so much so you can see that people are afraid of us! saylor in her chair holding a tuperware bin vommiting blood .... makes no sense this process!

So to make it short once again, we were admitted and intially admitted to PICU saylors labs in the ER were horrificly bad and the docs were very concerned about the seriousness of her issue. It became quickly apparant that saylor would be hospitalized for several days, and this utlimately was devastating for several reasons. First and formost because the steve young ski classic (that she had trained for all season, and was the poster child for) was quickly approaching and we clearly werent gonna make it. both her and i shed many tears over this realization. second because i was doing this alone, and very sick myself. In the end she basically had a severe bladder/kidney infection that caused her kidneys to do craaaaazy things. After a few days we brought her home, and a day or so after that she honestly was pretty much back to herself again.

What this taught me .... that knock on wood whenever i think she is stable and we arent facing any hospital stays, i will receive a reminder that we dont have a "normal" child with a "normal" body or "normal" health! that this is our bag of chips and its so lovely that we had such a good stretch, i should not let myself get so naive again!

what i found to not be lovely? the er process that then lead to 4 yes 4 room changed during our 3 day stay! what was lovely, that her nurses were so smitten they sent cards the following week ... but then thats not too surprising is it?

Miss STORIE - well as usual my strong and sturdy support system. She spent most of the crazy weekend with my mom having loads of fun. She is doing well in school and loving her social life. Growing up way to fast and throwing at me things i dont at all feel ready to chat with her about. turned 11 and had a fun party with family and friends! i feel so unprepared, how did this come about so quickly and what am i doing to be ready? ahhh so overwhelming. she is such a good kid though. just finished up boarding program. still playing the violin and loving her teacher. she is still on the UV rays swim team and for the most part enjoying that as well, and whether she does or not she is super good so she is gonna stay :)

Any of you remember cleer creek? well that time is upon me, and honestly it was hard to embrace. the thought of sending her away to camp with her friends far from me for a week with no control over what might happen to me is ridiculously ridiculous! I cant stop thinking about all the bad things that could happen, and how i cant let her go! but then thats not fair, i went at her age? whats wrong with me? and so i am working on letting her grow up!

Ok extended fam ... so my brother Joey has finished up chemo and is getting ready to start radiation treatment. Towards the end of the chemo he really began to look like a walking dead person! we are still waiting on a prognosis update but for now it seems that he is really giving this battle a run for the money. no doubt many more months of hard times are awaiting but he is fighting hard!

Our brother in law - married to nate's sister Nichole is also facing a serious cancer battle. you can read his story here.

I just feel so surrounded by tragedy and challenge. I cant give all i want to or fix anything that feels so necessary to fix. All i can do is do what i can do to ease the pain, the burden, serve those i love and pray with faith in God's plan for each of the people i love.

on a good note, so excited to have a new nephew, kyler. thanks heather & aaron. and another on the way from linds & cody.

As for me .... well .... my life is full to capacity, or maybe i should say my capabilities are really being maximized. Things are quiet busy at UBB and studio stems. new sites, new opportunities, growing business, and amazing clients! keeping up with the kids and the hub as well as their schedule. I did finally get over that cold that held me down while saylor was sick. But it took more then two weeks and i missed several important things because of it. I can say that i never have slept that well in the hospital with saylor, mostly because my body was so trashed i could hardly keep my eyes open most moments.

Lately i have felt so blessed by family and friends and their support in my life and the time i have to spent with both family and friends. Many friends have really reached out to me and lended a great deal of support during difficult times. I consistently see the hand of the Lord carefully taking care in my life, despite all the craziness, i know that i am loved, cherished and part of something greater, a plan!

On a house note, only because so many people keep asking .... hasnt sold yet. lots of peeps looking but not sold. and honestly the last few weeks have caused some serious reflection on the decision to go, and i am not sure its the right one. i feel conflicted and unsure of what the plan is for us and where we are supposed to be. for now holding pattern ... thats all i can say about that.

I recognized the other day a great need to laugh and have some fun as we come out of this crazy wave. I hope thats what is on the horizon for our little fam. Working on creating that for us. and as a last little BIG note ... {have you read all the way down here?} i do have one really BIIIIIGGGG thing going on in my life but your gonna have to wait, not ready to announce it yet! it deserves a post of its own!

Friday, March 4, 2011

no time to blog

I find myself short on time and the family blog just remaining on the to do list. I think often about what i want to share and write but it {time} never allows me the grace to do so ... so in short as usual ....

My miss storie turned 11! Can I believe it ... Yep I can! She seems older even sometimes. She is so mature and responsible, and wise! Wiser then I ever was at that age. As for her size, I only have to see her with her peers to realize she is more like the size of an 8 year old. Tiny little thing! Among her favorite gifts {though she loves them all ...} a day boarding with Torah Bright from Miss Neena!

an update on saylor ... first the fun stuff! The steve young ski classic poster girl! yep thats her!

As you know Wasatch Adaptive Sports has been so generous with us this year (and in years past) and really has spoiled saylor this year. She has come leaps and bounds in way of progress and its hard to watch without crying even still. I am amazed and proud, i hope they all are too. She asked Peter at the beginning of the year if she could be on the poster this year {i am not even sure what her fascination was with that but she wanted it} anyhow the season has led to her being their poster child in more ways then just being on the poster. But here she is on the snowbird site and the posters alll over the place! on WAS FB page and just about anywhere associated with the program!

She is cruising down the big slopes these days and this last week Nate and storie were able to accompany her. you can watch a few new videos on our you tube channel or watch here ...

and then there was the BIG day last week where we went to get a new chair at PCMC {and we did get a new chair} and came home with something else new! We went from this to .... this.

because of this .... {warning GRAPHIC!}

I warned you right. And now your thinking what is that? Well in short saylor has two stomas {ports} in her stomach. One is to access her bladder {the one that looks like pinkish skin bubble} and the other is to access her bowels, the bleeding white door! the bleeding white door is called a chait tube. It gets replaced every year actually. We have had troubles with this one since it was placed in June 2010. As of late is been even more troublesome including this not so great bleeding occurrence. I had emailed docs and called them, tried to address this issue and wasnt really getting anywhere so ... while we were at PCMC i brought it to the attention of some docs and ended up taking her straight to interventional radiology for a new tube procedure. Not what we planned. She WAS NOT happy with me or anyone else! But that all being said and to shorten the story up, she is much happier now and the problem has been resolved {for you SB moms if you want more detail about what went wrong email me :} and the chair is a long awaited delight in all our lives but especially hers!

thats all i have time for today :)