family pic

family pic

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 :)

1 comment:

Ashley said...

so glad to see everyone is doing so well! :) miss you guys!