My little Pixie...

Oh boy.  I'm feeling heavy hearted today.  Tyler is home ill again today.  Since we've been back from the hospital in Seattle, she's making it to school an average of four days a week, though last week it was only three.  There are so many things going on in her body.  She tries to stay so strong and positive.  She also tries to hide it and put up a brave front for others.

Her new meds are really giving her a tough time.  The Methotrexate is really hard on her.  That in addition to the Humira injections and the huge doses of anti-seizure medications are tough on her body.  I could go on and on and bitch about these meds, it really, really, truly sucks.

Since having her feeding tube removed, she is on the specific carbohydrate diet.  Complicated is an understatement.  It's gluten free, as well as no bread, rice, pasta, potato, grain, soy, starch, sugar, etcetera.  Most dairy is illegal, but aged cheese are allowed which is a huge win since she loves it so much.  There are limits on everything, but basically it boils down to fruits, vegetables and proteins.  Though there are some fruits & vegetables on the illegal list too.  Iye yie yie.

At this point, I figure I've lost anyone who might be reading this.  Now it's just for me to clear my mind & get it out.  Good old fashioned complaining = )

The diet is a tremendous amount of work, everything is from scratch.  Our treat last Friday was a  trip to the salad bar!  Crazy days yo.  We will get used to this, and hopefully it will become second nature for us.  After a few months, she will be able to have bites here and there of illegal foods, but that will have to be in much moderation, because we need to get her body functioning properly.

The grocery store is so sad, and frustrating for me.  Last Monday, JP went with me.  We were there over two hours, checking the legal/illegal food list and scrutinizing labels & ingredients.  Basically if there are more than four or five ingredients I can pretty much skip it.  The only type of flour she can have is raw almond flour and raw coconut flour.  Eight bucks for 16 ounces and 10 bucks for 16 ounces respectively.  OUCH!  Did I mention I started my grocery list the night before any also tried to use coupons.  Fuhgeddabouddit!  The grocery bill with card savings & coupons was about $230.00!  Now, you would assume that would be two or three weeks of groceries, right?  Sadly, not so much.

Price aside, I also mourn for the type of cooking I love so much.  I'm now learning a whole new style and way, but it's hard to teach an old dog new tricks.  I know there are lots of positives, but right now I'm expressing my frustrations.  I am sure I won't mind the price as much and will be much more positive about it when we see better results for Tyler.

On a rewarding note, she and her friend did their project for the science fair on Crohn's Disease and Ulcerative Colitis.  They did such a phenomenal job, and Tyler got to do what she has wanted to do for so long.  INFORM & ADVOCATE.  There was one gentleman that said he had similar issues and that he was going to see his doctor about his symptoms.  Talking to that one person, making a difference, helping someone get help, made her SO HAPPY!

Okie dokie, update on The Pixie Project:  I still want to become a non-profit.  And help lots of kiddos.  Tyler wants to as well, and though we'll start small & slow, we are going to share smiles & happiness and little pixie kiddo at a time <3  More on that later, I've got BIG IDEAS & BIG PLANS, but have to keep reminding me that you have to make sure your foundation is strong before you build a house on it  = )

Have a wonderful week, we are on the countdown to 8th grade graduation...busy, busy, busy!

   

PIXIE POWER!!!!!

YOU GUYS ROCK!!!!  I will never be able to express how deeply we appreciate your support during this particularly tough time!  We will be evermore grateful, more than you'll ever know <3

So, as some of you know, Tyler had to go back to Seattle Children's Hospital last Wednesday.  She was trying so hard to be well and think well, and honestly, fake well.  Fake well is where we get into really big trouble.  This is where Tyler is so sick of sick that she ignores sick and pushes herself, and fakes well so she can go to school, see her friends and feel normal.  Okay, so, for all of you who have ever faked sick to stay home, it's the same premise.  Fake well to LEAVE home and be well as opposed to fake sick and stay home.  Who would have ever imagined?  Not me, as a kiddo, there were days that I faked really sick, because I just needed a "down" day.  She fakes well to have an "up" day.  Never in my wildest imagination.

One thing I have realized this past week: every day is a new day.  No, not cliche "new day", I mean, really, every day is new.  New challenges, new experiences, new symptoms.  I think or expect one thing, and end up with something entirely different.  I've stopped updating people, even those closest to us, while we are in the hospital.  One moment everything is terrible, grim outlook. Then there are a myriad of changes, up downs, and critical decisions, and in this case an <almost> miracle.  Often time we think everything is fine and it is awful, sometimes it seems horrible and it's easily adjusted (notice that I did not say fixed).

So, I am going to abbreviate as best I can here to save you tedious details and drama.  We went to SC because for a week Tyler was unable to tolerate the feeds.  Then she was having trouble with anything coming out downstairs which is odd with the amount of input and the nature of Crohn's Disease and Ulcerative Colitis.  She got to the point where she had lost 5 lbs in less than a week, anything we put in upstairs came out, and nothing came out either way downstairs.  There have been several times we've feared complete obstruction or blockage, and been lucky.  This time, she knew she was blocked.  It was evident to her docs as well.

Physically, within her intestines, the worst area has so much scarred tissue that the intestine is permanently narrowed, and is a continuous concern for obstruction.  So, fast forward.  Our doctor comes to us and says we have two options, and he doesn't like either one.  So, we discussed them and decided on the option we thought would be best.  For us, this meant, (hopefully) much less time in the hospital if it worked.  Also, less radiation from the get go.  I will not bore you with the amount of radiation one is exposed to in each scan; that's for another day.   So, we picked the right option (sheer luck)!

Four machines on one pole, four bags, meds, iv fluids and the ever fabulous go lightly, doubled up for max benefit/hopefully quicker answers.  This is the first noticeable benefit of the feeding tube, she didn't have to drink all of it.  It went in through her tube.  Good thing, she couldn't even sip water!!!  So, going into procedure, doctor was realistic.  Surgery has been put on the proverbial table.  At this point, whatever it takes for healing and relief.  Somehow I've developed a hospital-numb that keeps me from hoping for too much or fearing the very worst.  As I said, it changes constantly, minute to minute, so after four years, I guess I've learned to try to not think one way or the other.  It's exhausting.  I just focus on the info I have, the info they give and more than anything what Tyler is saying and feeling.

So much for long story short!  This really is the abbreviated version!

So, when they gave her the anesthesia this time it was administered differently than all of the other times.  Normally she knows what to expect, or they tell her.  Not sure why, but they did not tell either of us that this would be painful.  So, when she went under, she was in severe pain and very distressed.  It was horrifying and unsettling to see, but for her, it was awful, frightening and painful.

So, when they were all done, her doc was thrilled, giddy.  He said the nurses were making fun of him for taking so many pictures.  Everything looked amazing, her GI doc was shocked, because every time they go in, it's worse than the time before.  This time, he said, if a colon and GI tract could be gorgeous, hers was!   !!!!!!!!!!!!!!  This is the first positive & improvement that we have had in over four years!  A. Ma. Zing.  The blockage was the elemental formula, not physical!  Wahoo!  That's so huge!!!

When she came out, her heart rate was very low and they were very concerned.  We still didn't have a plan, or know what we were going to do yet.  Friday night we had a huge scare, her heart rate went crazy, up down and all over the board.  She felt strange, and her throat and chest were tight.  This was what happened when she had anaphylaxis in the past.  Panic button, called for nurse, doctors came.  Benedryl and monitoring, all was okay.  Just really scary.  What happened was she had a pain attack. We got to see what it looked like on the heart monitor and see what her body did as recorded by the machines.  My labor pains had nothing on that!  (Did I mention I had her naturally with no meds?  Yes, her pain is that wicked.)

There was no talk of going home.  : (  They also put in a new feeding tube while she was under, so it looked like we were going to stay on it.

Saturday around noon, her GI doc came in and we came up with a plan.  Add in a few new meds, including Methotrexate.  This time, we plan to have no side effects.  Methotrexate is a chemotherapy agent.  Last time, it was a higher dose, and we injected it subcutaneously weekly.  The side effects were worse than the disease.  Again, we are reassured that this dose is smaller and it is oral, so she shouldn't experience the side effects. *fingers crossed*

So, it took several hours, but we got new meds, they TOOK OUT HER FEEDING TUBE, and we got to go home!!!!  She'll be on a crazy strict diet, The Specific Carbohydrate Diet, which we've done before and it was so difficult.  This time, I've already been there once before with the crazy preparation & cooking, and compared to the tube, it's not bad at all!

Unbelievable!  The doctor was shocked and thrilled!  So, we know that when things get bad and she gets really sick, the feeding tube works.  Does it suck?  Hell yes.  But, it works, and it's not the tube.  First thing in over four years!

After we went over her new treatment plan, our doctor asked Tyler if she had any questions.  The girl who doesn't give hugs without a fight and who doesn't cry in front of any one said, "Yes. I want a hug." And she cried softly as she told him that he did for her in four months what her other doctor wasn't able to do for her in four years.

<3

Merci!

So much to be thankful for with everything going on in the world today!  Somehow, all of our Pixie Peeps out there have found the time to send something special & fun to Tyler.  I am behind on Pixie thank you notes, (big surprise!) but if there were a way I could convey how amazingly thoughtful & sweet everyone is, you would be smiling so big your cheeks would hurt!

It's been just over a month with the feeding tube.  Very, loooong days, weeks, month.  There is no way to explain it to you, so I won't even attempt it.  While I'm complaining I might as well tell you how much I miss cooking.  But, I know it couldn't possibly compare to how much she misses eating, drinking and tasting!!!

But, on the days that there is a card, or a letter, a drawing, sticker, or other fun little Pixie prizes it's so fun to watch her!  It really brightens her day!  Each time there is something in the mail for her she is SO delighted, and she's surprised and thrilled.  In the age of instant everything, texts, internet etc., we forget about the simple pleasure that a note from a friend can bring!  She still can't believe that anyone would even send her notes, cards etc.  (I love that about her, she doesn't expect anything and appreciates everything!!!!)  The best way to explain it is this: imagine that to her the mail box is the present she's opening, or unwrapping.  The cards & letters (and packages) are the surprise gifts inside the box.  I think all kids are this way when they get mail, I know I still am!

So, since we're already here, and I'm already writing, and it's my blog, I'm going to take this opportunity to vent.  Who are we kidding I'm about to rant!  In the past month, we have been floored at how some people treat/look at Tyler with her tube.  I'm even more appalled at what people ask her and say to her.  The worst have been adults, NO KIDDING!!!!!

Last week, a substitute teacher took it upon herself to tell Tyler that her disease was due to a parasite in her liver, and that the medicines she was putting into her body were poisoning her and killing her.  What could a child say to say to that?  We tell our children to mind their manners and respect adults.  Don't talk back.  My daughter was powerless in this situation and just had to take it!  Furthermore, she was really embarrassed because it was said in front of her classmates and friends with whom she does not discuss the specifics of her disease, the battery of treatments, horrible medications or torturous symptoms.  They know she gets sick.  They know she's absent a lot.  That's about all she would like them to know.  She really doesn't even say much to her dearest friends.

So, this fabulous teacher, who is evidently doing the world a favor by teaching our children instead of using her extensive medical degrees to save everyone from parasites and poisons was able to diagnose Tyler within a few minutes of class, basically upon sight!  She's a freaking genius!  Those students were in the presence of greatness.  My sarcasm is dripping, I know.  I wish I was kidding.  Tyler's friends really are awesome.  They are so protective of her, and couldn't believe what they heard.  Tyler shrugged it off, and simply told them that she's used to it.  She's not, and it was the singularly most hurtful and offensive thing said to her thus far.  It has been addressed, though I should have handled it immediately.  I didn't because I was afraid my temper would get the best of me.  I decided to write a letter.  Write a letter!?!  I thought it would be effective.  Next time, immediate action, temper and all.

This afternoon, when I picked up Tyler, I had feelings I don't even have words for.  The emotion was entirely foreign, there were too many feelings at once.  Today the teacher was subbing again, and was evidently asked to apologize to Tyler.  So, she apologizes to Tyler, again in front of everyone.  Tyler said it was actually worse today because again she was stuck.  How to defend herself, speak her peace?  Tell this person to go away and leave her alone.  She had to stand there and politely accept the apology.  Still searching for the words to describe my reaction.  Actually, my reaction doesn't matter.  It's Tyler's reaction that matters, her feelings, and I can't undo this.  It happened.  I just want scream at this person and shake her.  Evidently Tyler wanted to hit her, but, she didn't.  ***Whew***

So, tomorrow, when we are at the Hospital in Seattle, I will be sure to tell her doctors that it's a parasite.  I'm sure they'll be relieved, and apologize for having missed it for the past four years.  Then they'll commend this brilliant person for finding a cure to Crohn's Disease!  I would love to be the first to commend her....

It's working! Mighty Pixie Project is a success!!!

You guys are SO awesome!!!  The Mighty Pixie Project is working!  The idea was to send a letter, or a card, something simple that didn't cost much, so that Tyler would feel love & support.  Keeping her spirits up is paramount during this tough time.


Her friends came to visit before she went back to school, which was awesome because she was feeling uneasy about being out and about and what people would say.  Spending time with them was the best medicine for her spirits!  Feeling like a kid, excuse me, teenager is all she really wants.


So, last  week was really difficult, and it was a challenge to try to keep her mind occupied and distracted from thoughts of food.  I hadn't realized that it's pretty much inescapable, it's ev. ry. where!  On tv, on the radio, you pass by a bazillion restaurants, stores, and mini marts every time you go some where.  Ads.  Billboards.  Books.  Magazines.  You smell it.  You see people eating it.  People talk about it.  There's a kitchen in the house.  We haven't been eating or cooking in the house, in a show of solidarity, but the kitchen is still there.  Pretty tough to avoid.  


She was pretty much angry at the world last week.  I tried to do little things to cheer her up, we went to the park with the dogs, we went to see The Village Musicians play, we went to the salon to get her hair washed, and to the Lancome counter for a mini-makeover.  These are things that she would normally be thrilled about.  She's always so appreciative.  It broke my heart that she was still miserable (not that I blame her).   Holding back the tears in my eyes, I told my Mom how worried I was about her, and that I just didn't know what to do.


Then, Friday, at the end of the day, something really amazingly cool happened.  There was a knock at the door, it was the Fed Ex man.  When I showed her the envelope, it piqued her interest.  I explained to her that it was from my friend Ashley in FL.  The best was the smile and joy on her face as she looked at the contents of the envelope.  She looked at the pictures Ashley's kids had drawn and colored for her, and the notes they wrote.  I KNEW IT!  I knew that something as simple as a picture colored by a kiddo would brighten her day!  Among the other treats in the envelope, there was also a funny picture of a grey kitty that looked like our kitty Becky.  Cracked us up!  


She was amazed that a family she hadn't even met would take the time to do something so thoughtful for her!  Seriously, that's what I was hoping for, and it worked!  I was so happy to see her smile, really smile!


When I made a list of ideas, I included things like a comic or funny a picture, or a picture your little one colored.  The idea was not to solicit gifts, but things that didn't cost, other than time & postage.  It's fun to get something in the mail, and she's surprised and thrilled every time she gets "Pixie Mail"!


She said the sweetest thing when the mail came Saturday.  She got another card, and a lovely anonymous gift.  When she opened the gift, she said;  "Who would have known I was looking at this?  I wanted one of these!"  Then we spent the rest of day trying to figure out who it was from.  (I figured it out : )  


For the last four years, we have been in the "Crohn's Closet".  It's so difficult to talk about, but now, with the feeding tube, we can't avoid it any more.  So, we decided to try to make it a positive.  With your help, it's working! 


We cherish and appreciate your words of encouragement, both on -line and in the mail.  Tomorrow will be two weeks with the tube.  Two and a half months to go!  So, if you think of it in the weeks to come, drop her a line!  It's something small you can do that makes a HUGE difference!


XOXOXO from MighTy Pixie & her Mom


PS ~ I really think that this is such a great idea for kiddos when they are really sick, or going through something horrible.   My hope is to use this as a model and one day I hope to expand this project to other families <3

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
  

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