One week, one day...

Well, here we are.  One week and one day with Tyler's feeding tube.  It's been 8 days of frustration, anger and sadness.  She has been so strong, I hadn't imagined it would be nearly this difficult.

Today I called her GI doc and asked if she could have gum, or a slice of lemon or cucumber in her water, or diluted broth.  The answer was a resounding "No".  She has to be in total remission before they will even consider anything at all.  Remission, the ever elusive remission.  We've heard about it for four long years now, I am really looking forward to it!  I would bet all of the oil on the earth that she wants it more than I'll ever know or begin to comprehend.

There really are no words to explain it.  I am also hesitant to share details that she may object to.  Everything I want to say sounds so lame.  So, until I find the right words, I want to thank you all for your support, it's the only thing keeping her going!

PS~While you're here, feed our fishies.  Yes I'm aware of the irony here!  Just click near the fish or anywhere in their "tank" and they'll swim over and gobble it up.  I put them on the blog because they're cute, and somehow peaceful to me.  I'm easily amused, and hope you are too *wink, wink*

Valentines Day, an ugly anniversary for Tyler...

Today is four years.  Four years since we knew something went wrong, really wrong. As far as we can tell, now in hind sight, the signs and some symptoms started years earlier.  It took a simple infection for it to set in and take over her little body.  No doctor could have ever diagnose or fathomed what was to come.  To say my daughter has walked through hell would be a gross understatement.

There is no easy way to say this, or explain this horrible disease, but as some of you know, my daughter has been suffering from severe Crohn's Disease & Ulcerative Colitis.  She was also diagnosed with a serious nerve condition this fall.  We don't say much about it because she is fiercely private of the details of her pain, symptoms & emotions.  Ironically, Valentines day is the four year anniversary of her becoming seriously ill.  The meds aren't doing what we need them to do.  Wednesday, we'll check in to Children's Seattle and she'll get a feeding tube.  Water and ice for three months.   Nothing by mouth, not even gum.  100 % IV nutrition.  The tube will go in through her nose (least invasive) and feed her while she sleeps.  Less invasive, yet it will be taped and visible on her sweet face.  Awesome.

There are so many details, so much to tell, but this is not the forum for that.  This is a positive place for people who love Tyler & want to support her.  If you don't fall into the categories of loving her or just wanting to help a suffering child, please see yourself out of this site.  Stress exacerbates her condition, and we avoid it at all costs!  This site is only for strength & well wishing. 


For Tyler, this sucks.  It's awful, and it has been for years.  She's angry and frightened.  We don't know what to expect, or what comes next.  She puts up a brave front, but she's a scared young girl who is very ill.   I'm not sure that I can sufficiently articulate it, what she deals with and is now facing, but it's miserable, life altering and horrible.


Now, here's the project and what I am asking.   For the next three moths, I am going to be asking you to send her cards, letters, comments, song lyrics etc.  Anything tho brighten her spirits and her days.  We have no idea what to expect.  My goal is for her to get two or three letters/cards a week.  This will really help brighten her spirits (I HOPE! :)


Maybe you could send one or two over the next three months.  It's quite simple, yet will have a huge impact on a lovely little spirit that desperately needs it.  Once or twice over the next three months send her something in the mail.  


Here are some ideas:
Letter
Quote
Song lyrics
Comic strip
Joke
Funny picture
Card
Memory of the two of you
Positive thought
Stickers
Temporary tattoos
If you have a kiddo, have them scribble or color a picture for her
Mix CD of songs you like, she likes, or songs that make you think of her
Anything else that fits in an envelope....


***Please no food, candy or gum.  That will be hard enough to avoid as it is : )


I have two more requests.  First, please, please, please don't say, "But she looks so good" to either of us.  We may have to hurt you.


Also, even though you mean it, please, no matter what, don't say"Get Well" to Tyler.  She doesn't have the option of getting well, and it is a painful reminder to her.  It's something that really cuts deep for her, because there is no cure for Crohn's Disease.   There is a cure for Ulcerative Colitis, but that is removal of the colon.  


Thank you for taking the time to read this.
Thank you for caring about Tyler and supporting her.
Thank you for understanding that though we haven't publicly shared many details, we appreciate your support more than you realize!


Please send well wishes & positive thoughts to:
Tyler Stagman
407 North 66th Avenue
Yakima, WA 98908


Remember that we are working with a three month time frame to start.  I want to try to spread out the love & well wishes!


Thank you dearly, 


Karri
  

Listen to Mighty Pixie