Hey guys!! Kayla is back. Did NOT feel worth crap yesterday, as I'm sure any one of you can imagine. Not the most comfortable experience! Actually, the wost part of it was the prep. "Go Lightly" are two words I never want to hear again. Nas-TY!!! Not only does it taste bad (try imagining red licorice coated in salt), but the whole point of it is to "purge your system". Now, I'd hope you all could use your imaginations to come up with what this is.......yeah. Well, with that behind us, we are still without answers, and to tell the truth, more questions! I mean, if my insides look so beautiful, why the heck am I like this?? A tad off the subject here, but I have been wondering, how do these people decide what they want their profession to be? Are the like, 12, and they're sitting around and all of a sudden have some kind of epiphany, and say "By gosh, I want to be a poop doctor when I grow up!" or what? Anyway, Mom already updated, so I'm kind of out of a job for the time being. I will most likely get back on even if I don't have any news, since there isn't much else to do around here!! If I'm not back before, have an awesome New Years!!!

Transplant

Hi everyone.

Kayla's mom here (Jeneice),

I have had a lot of questions regarding the transplant. The transplant is on hold. They are still trying to get the Chron's under control. They have her on Remicade & 500mg Steroid pulses. It has helped her stomach to a certain degree. It has replaced the Enbrel (Kayla is so excited about that!! Wiped out 2 shots a week. The Remicade has helped her arthritis, that is a big plus.)
Today, they did a endoscopy & colonoscopy & a capsule to see if it will go through her intestines.
If it does, she will get a capsule endoscopy ( a camera inside the capsule taking pictures of unreachable spots.)
The tests came back with good news. Just not a good explanation of why she had so much stomach pain!?
Rick & I should be meeting with the Transplant Doctors the second week in January. Should know more by the end of next week.

Gotta be quick, but I wanted to post before it starts to get any more chaotic. I have decided to get a feeding tube so that I can get the Go Lightly. I tried to drink it, but it tastes like salty licorice!!! Not the best taste, let alone aftertaste!! Hopefully that will make things a tad easier. I will most likely post tomorrow, depending on how I feel after. The test is scheduled to be at 11 tomorrow morning. Oh, great. My bandage for my port just got changed less than an hour ago, and it just came off!!! Wish us luck, and pray for God to guide the docs hands, and that we will get results, preferably good!! Love you guys!!!

Merry Christmas!!! I hope everyone made the best of theirs, as we did. I was able to get a pass for 6 whole hours!! We went across the street, where we did the whole opening presents thing. I got some AWESOME stuff. I got an iPod nano, a Nintendo DS, three games to go with it, a really nice art kit, a bunch of really cool little trinkets, lots of soaps and stuff to pamper myself with, lots of socks, very yummy treats. A very nice figurine of an angel, lots of little butterfly things, etc. I am now the envy of everyone I show my iPod to. Who can blame them, it's an IPOD for goodness sake! It can hold about 1500 songs! But the best present was probably being able to spend it away from here with mom. A close second would have to be the fact that they let me have real, solid food!!! Turkey and mashed potatoes and gravy, even some dessert! Then today they let me be back on my regular diet minus beef for today! The catch, you ask? Well, I am back on clear liquids tomorrow, and I have to take this stuff called "Go Lightly". Can anyone guess what THAT does?? Yeah, yup, you guessed it. I have to prepare for a double whammy, a scope from both ends. That happens Friday. Fun stuff, I tell ya. All in all, my holiday was still better than I thought it would be. Hoping everyone had as good a time as we did!!

Ho Ho Howdy!!! Merry Christmas, officially! I know, you may think it's a little odd I'm posting at such an ungodly hour, but I couldn't sleep. I was able to get out on pass today, and so me and mom went and hung together at the Ron Don for a few hours, which was very nice. Just being in my good old jeans and laying around with mom. Just being outside these four disgusting walls was nice. Not so good news came back this morning, though. They repeated the CT scan today, to compare to the one they did on.......I think it was Thursday. Well, the first unpleasant thing was I had to guzzle Barium.....which they were disgusting enough to mix with ORANGE SODA!!!
Oh my gosh, that was barf city there (not literally, thank God). The results were definitely not what we wanted to hear, though. They think ( these doctors always "think", they never know. It can get a little old, always hearing, "well, we THINK this, or we THINK that") I may have lost some of the fat around my stomach. Now, I'm sure the majority of you are thinking, "Has she gone mad? A little loss of fat around the stomach?!") It's something we could all use a little of, am I right? Wrong. This is not the lovely little muffin top rolling over the waist of my pants, people. We're talking the good kind of fat, the fat that protects the lining of your stomach. Therefore, in losing this little bit of fat, my stomach is more vulnerable. They seem to have seen some vessel that is pressed up against part of my upper bowel, causing it to contract enough that things can't pass. I'm still not 100% sure what this entails. They said that if things don't improve, it could lead to a feeding tube. Now, this is not the most pleasant thing to get placed, but I don't think it will be too bad, since it's like 5 times smaller than that NG tube I had when we first came in. And I woke up to this fiasco! That was not a very nice Christmas present. But all we could do was shrug it off and enjoy our time together. So we did. And today, we are going to do the exact same thing. It's all we can do.........

Okay, I'll be fairly quick here, but I thought it would be nice to say something myself before Christmas. Well, life sucks pretty bad right now, but as we all know, it will get better. Some good news is that Dr. Wallace is pretty positive about the prospect of me eating real food on Christmas!! I swear, that is my only wish. The only present I want is FOOD!!! They have switched me from morphine to hydromorphone, which is pretty much just a stronger form of morphine. My stomach is getting better slowly but surely. By the way, I would like to thank the WELCA ladies for the wonderful gifts, and thoughts and prayers. Thank you Nan for the advent calender. Even though we'll most likely be inpatient for Christmas, we'll make it work. Last year wasn't all that bad. The bummer part of this year is that it'll only be mom and me. Dad's at work and Kandice is spending it with the Thompsons. More good news is that the shingles is pretty much done. It can still itch and hurt up to three weeks after it is no longer contagious (the correct term is crusted over, but how revolting does that sound?!). We had a blast while Nathan and Ruth were here, it was a bummer when they had to leave. The boat show was soooo cool. There were a few down sides to it, though. There was one family, I swear, the dad had to have been the energizer bunny, cuz his offspring kept going and going and going.........Oh my. Let's just say they really didn't need those cookies and cider. Five kids, one mom, sugar. You do the math! Of course, I had to fall asleep for nothing but the carolling. No joke, I was out like a light almost as soon as it started, then woke up to hear the last dying voices! That's me, though. That's how I do. Not much else to say, really. I guess I'll blog when I have something new to blog about. Smooches!!

Liquid Diet AGAIN!!

Hi Everyone.
Posting for Kayla today. Unfortunately, she has been put back on an all liquid diet. Chron's is acting up. Hopefully she will be able to eat mashed potatoes for Christmas. She will most likely be inpatient for Christmas. We are praying for a pass.
She will update herself on Monday.
Take Care
Jeneice & Kayla

Hello my loves!!! Can't talk for long, Ruth and Nathan are here. Out of isolation! Woo hoo!!! Going out on pass! Woo hoo!!! We are going to the Christmas ship parade tonight. It has been soooo much fun having them here. I'm just really glad that I got out of iso before they left! We are spending some time in the playroom, waiting for the piano to free up so I can play some Christmas carols. See ya, I don't hear any piano, so I guess it's my time to tickle the ivorys!

Hi all! Well, my rash is on the mend, it is mostly dried out, and I might even be considered (I hate saying this......) "crusted" (when there are no open wounds, that kind of thing). I LOVE the Wii, it is sooooo COOL!!!! I am a master at boxing, pretty good at tennis,bowling, and golf, and I'm ok at the baseball. I actually worked up a sweat last night! I was out of breath and everything! For dinner we had salmon and asparagus and roasted potatoes (obviously mom cooked and brought it over, no WAY could the hospital muster up something like that. They have even managed to mess up a fruit plate! In Seattle!). And then we had these cute little cakes. Be back later, I have VISITORS!!!!

Ahhhhh, it's amazing what a shower can do for you. Seriously. I wasn't feeling very positive, hopped in the shower, and now I feel peachy keen! Well, except shingles. That part still sucks major. But I'm not letting it get to me. The docs say my rash is doing a bit better than yesterday. They also said that I should be fine by the time Ruth and Nathan get here. Thumbs up for that! I am on almost all oral meds, so that's one step closer to getting out of here. Overall, today has been a much better day. And it's about to get even better, cuz Dad is flying in tonight! Yippee! It always seems like so much longer than it really is when he's gone. He manages to make iso a little more bearable. Not that Mom isn't the best! Since Dad will be here, Mom might even be able to go over and visit Aunt Kat. I hope so, she deserves a break. One of us has to have one every now and then. A really cool thing is there's this therapy where they don't actually touch you, but use different energies to rid the area of pain. How cool is that? Okay, so I'm gonna go now, but I will be back tomorrow. Love you all!!!!

Ok, I'm gonna be quick, cuz I've got a head-splitting headache. I thought I should update, even if there isn't much to say! Shingles are still nasty, getting a little worse. Hopefully they will clear up by Tuesday, my pen pal is coming for some appointments. I might not be able to see her! And of course there's Ruth, I HAVE to be better by the time she gets here! My port is sooooo nice! I like it best, which is funny cuz I was just saying last week I didn't want one! Well, I guess I shouldn't judge before. I'm gonna go now, cuz they aren't lying when they say shingles is painful! Buh-Bye Loves!!

Okay, I'll be quick since I'm getting Benadryl, but I have some wonderful news (major sarcasm here people) !! I have SHINGLES!!!! For those of you who don't know what this is, it is kind of like the adult version of the chicken pox. Isn't that just frickin-a-lovely?? So I was supposed to get out this weekend (I was gonna tell you, but then this showed up), and then they come in the other morning and say "Oh, yeah, by the way, we think you have shingles. So you're on ISOLATION, and on ............... (such and such med, I can't remember the name. Benadryl, 'member?). So sorry, but you'll be in here another two weeks. But that's okay, right?? NO IT'S NOT FRICKIN ALRIGHT!!!!! Whatever. I am sooooo P.O.ed right now! AND, my frickin port hurts like a bugger. They had to change the dressing smack dab right out of surgery. The needle was too short, so it wouldn't draw, and nothing would infuse. Therefore, they had to change it out. I now have a needle that is an inch and a 1/4 long! Oooooo, I'm getting very loopy, so I'll get off here, and post more when I can actually comprehend what I'm typing! Toodles, my poodles!

On our way to the NutCracker
(in my new dress)

Hi Hi Hi!! Well, my line surgery went as smoothly as it could. I'm still in a bit of pain, but I have four different painkillers, so I am fairly set. It was being temperamental this morning, though, and tried not to draw! But we got the best of it.......this time. They also brought more paints, so I am going to paint my windows when mom wakes up. I hate it when they put leads ion me at night, they are more of a nuisance than anything, always going off with their annoying bells in the middle of the night! Yuck. Well, anyway. I 'm glad y'all liked my dress, I felt so pretty in it! I am going to write my poem (s) into a song, with the help of David, the music therapist. I also met another patient who plays the piano. He's really good. Also, back when I was having my muscle spasms in my back, one of the fellows (that's a type of doctor) knows acupressure, so she would come a few days a week and do that to help loosen my muscles. Well, she would use this lotion that smelled like sweet peas, and so the other day she saw some sweet pea shimmer body lotion, and got it for me! Uh oh, I'm on the playroom computer, and my battery on my IV pump is dying. I'm getting really tired and my chest is starting to hurt anyway, so I'll talk later! Loves for my doves!

A day out at The NutCracker!

Ok, so he's gone now, but he's coming back soon. So, where was I? Oh yeah, complaining about how they are starving me for probably no reason! Gggggrrrrrr...........oh well. Poo. There. OH!!! AANNNNDDD..........they actually put an IV halfway up my arm, right above the crease in my elbow!! YUCK!!!! It hurts so bad. Oh!! My ring tone for my phone is "Grandma Got Run Over By A Reindeer". How awesome is that???!! I figured what the heck, why not? It's festive, isn't it?? Anyway. I'm glad everyone likes my peom. I think I'll even write it into a song. I mean, what else am I gonna do? We decorated my room last night. Ron got here Saturday night with our truck. That's been really nice. Well, I just realized I need to get my shot! We restarted them today, But they are going to try and cut back the evening dose entirely. If that doesn't work, then they are gonna try and go to 1/4 of the real dose, which is 100. Making the evening dose 25 mls. Which isn't really enough to make a difference. But anyway. I've gotta go stab myself, and the therapy dude should be here with my keyboard any minute. Toodles!

Howdeeeeee!!! I am waiting for surgery to get their crud together, so I can either eat, or get a port! I have a package of cookies taunting me from across the room!!! And mom and Aunt Lez just got back from The Confectioner's, a really cool kind of upscale candy store. Mom got me a bag of candy, cuz I like their sour chewy candy strips. Oh, the music therapy guy is here........I'll post after he leaves............

Deck the halls with boughs of hol-ly, fa la la la la, la la la la!!!! The play, was AWESOME!!!! I recommend it to anyone who can go! And, as soon as I can, I will post pictures. I felt soooo embarrassed though, because`my water fell as soon as they made everyone quiet and lowered the lights and everything, my water FELL!!! And all anyone could hear throughout the auditorium was the THUMP, THUMP, THUMP, THUMP, of m y water down about 100 steps. I was so embarrassed!!! But a very cool thing happened during intermission. We got a tour of backstage!! We saw all sorts of things: costumes, the orchestra pit, some ballerinas, the sets, even got to meet the main character! That was super special. And it, very appropriately, snowed! Then we went out to P.F. Chang's for dinner. All in all, it was a very cool Saturday. The best I could have asked for!

And I want everyone to keep praying for a continuing recovery for Maggie. Well, here is that poem I was telling you about:

All of me is not what is here,
there's more to me than meets the eye,
what is close may not be near,
but hiding with an alibi.

At first glance may seem the same,
normalcy with a different meaning,
to some and all life's just a game,
never pain of suffering, bleeding.

There are two sides to every story,
where there is light there's always dark,
where defeat tramps at glory,
and two in one embark.

On a journey of a precious kind,
applied all throughout life,
from forward and behind,
I think this life will have to suffice!

Well, let know what y'all think! Ta ta ta ta ta, ta ta ta ta!!!

Yo all! Wazzup?? Not much here. Shopping was awesome! I got this super cute dress, so now I have a little black dress. We'll of course take pics, and post them. By the way, the Child Life supervisor is about to have a baby boy. Can anyone think of names? I personally like the name Elliot. The middle name will be Robert, and the last name is Marti. Her hubbie wants to name him Moses, or William. I have resolved to try and talk them out of both, since Moses is pretty self explanatory, and William is a funny thing, really. It's a good name, but a common nickname is Bill, and if they named him that, well his name may become Billy Bob Marti!!! I love that fact, it amuses me to no end! Post names if you can think of them. I am even more freaked about the port, since I just now learned of a little tidbit that pleased me even less than the thought of a port-a-cath. They replace it every week! Meaning they somehow go in and change out the little disc. And you have to use special needles, and Emla to numb it every time you access it. How sucky is THAT???? Well, it seems that almost every time I post, some meal arrives! I leave you with this awesome quote: "If you live to be 100, I want to live to be 100 minus 1 day, so that I never have to live without you."
-Winnie the Pooh-

Don't you love that WINNIE THE POOH said that?!

I've got one better than getting out for the Nutcracker, I'm getting a pass tomorrow to go shopping!! Ha, my luck is turning. But I really hope this IV lasts until Friday, so I can get the port without problems. It's kinda weird how it works though, and one would think going through the skin every time to access it would be more of an infection risk than a different line. Whatevs, though. I'm trying hard not to sweat it. I need no more stress in my life than necessary. Well, I am soooo excited about the Nutcracker I can hardly stand it. Aunt Lezlee gets here Friday, so that will be cool too. Oh, and I made this awesome poem, which unfortunately I don't have w=on me at the moment (I am in the teen room on the computer, mom's got the laptop at the Ron Don). But I will post it as ASAP. I think it's one of the best I've written. It's super deep. Well, I think I'm gonna sign off on this harmless note. I'll post tomorrow after the shopping excursion, and with it I'll post the poem. Love to all, and to all a good night (I've got Christmas on my mind)!!

Hi Hi. Well, I am now lineless. Which sucks. Bad. I have an IV in my wrist, and it hurts. The docs are thinking maybe Friday we will put another line in, but whether it's another Hickman or a port they're not sure. I have another dose of Remicade on Friday (that's for the Crohn's). This is all a little too close to my plans for Saturday, though. We are supposed to go to the Nutcracker. That would totally suck if I couldn't go. See ya.

Hey, all. Just killin time while I wait for the surgeon to come in. Yes, I said surgeon. They think they might have to pull my line. They found something on the end when they did my echo today, and they think it's either a clot, or vegetation of infection. Elch. They are gonna do whatever they can to keep it. The cultures have been growing neg for 2 days or so, so that means 1 more, and I'm clear. Some other good news is they advanced me to G-2 diet. That means I get gravy with my mashed potatoes!! Woo hoo!!! No, really, there are a lot more options on the G-2. Speaking of, it's here, so I'll let you know more when I know more. Loves!!

Hello, my doves!! How are we today?? Well, you can probably tell I'm in a bit better mood than the other day, since I am back on a G-1 diet. It's amazing what food can do with endorphins! Well, they have identified what kind of Staph infection I have, and luckily (depending on how you look at it I guess) I had it back in June, so they know exactly what to treat it with. It's Vanco, not my favorite, but whatever. It's one that I have to get a trough level every day, which requires a finger prick, then about 20 minutes of milking (no joke, they have to squeeze the blood out somehow) into a tiny tube. Blech. There's also another one that I've never had before (I know, I didn't think there were any left either!). It turns my tears orange. Weird, I know. They say "better living through chemistry...." or whatever it is, but I've seen a few things around here that may say differently. Like when they hang a med that has a Highlighter yellow tag on it saying "hazardous". HHmmm. Makes you wonder.

A few other things have been on my mind. I'd have to look back and see when it was, but my 100th post blew right past me, and I didn't even remember! I feel like such a failure as a blogger. And another thing is Maggie. She's one of my buds from the confirmation/church scene who had a nasty accident awhile back. Pray she gets better quick, so that there'll be one of us!! There's one more thing, and it sucks, but y'all gotta know. My line has quit drawing..........again. And since I have the infection, they can't do anything about it until after. The infection's probably on my line anyway, not that they can know that, since it WON'T DRAW. Well, I'm off, my G-1 lunch just got here. Toodles!

Okay, gotta be quick, because I need to take a shower in my little time slot. Gobble Gobble. Yeah, chicken broth on Turkey Day. They also found another Staph infection. They think. It's some sort of bug, and they're throwing all the usual meds to counteract it. Now I'm gonna go, but I'll update when needed. Goodbyyyyyyyye.

Oh, I feel so mean! I feel like it's been ages and I've been ignoring you guys, and that makes me feel even crummier than I did when I started typing. I am on a full diet again. Not much different from any other, I just have to watch out for foods that could potentially send me into a flare. So, yay, I can eat, but poo I'll be in here for Thanksgiving. Oh well. Sissy (Kandice) is driving from the airport as we speak, so I'm doing all I can to festivate my room. Not that it needs help, my quilt is AWESOME!!! All my nurses say so. I think it's awesome. Hopefully I can get out nest week. Thanksgiving isn't a very popular discharge day, they don't seem to appreciate that. oh, GOBBLE GOBBLE!!!!

Ick. I don't feel very well right now at all, and the only way I can feel better is pain meds that make me sleepy, and sleepy meds that make me sleepy. And -blech- walking to relieve gas buildup. The have now got me on a g-2 diet, hopefully that will blow over without a sitch. But I'm pretty non-responsive as I sway back and forth in front of the computer screen. I will stick out the rest of my walk, and then see what I can do about a nap. By The looks of it, I'll need some more Adavan for my arms before it's all said and done. That, and even though i was heavily medicated, I don't feel like I slept well last night. My arms are going to drive me insane, I swwear. Screw spell check, I just want to take a nap cuz I feel like the water works are about to open full throttle, and I have no idea why! sleep. I need sleep. I think. I don't kniow, but I have to go. I love you all tomorrow! P.S., who liked my poem???

Okay, the verdict is in. I have Crohn's disease. No big, I am starting a new med today, but the transplant hasn't been derailed an inch. Still on. I'm not feeling vey hot right now, I just had three holes drilled into my stomach including in through the bellie button. And they also managed to rip that N-G tube out, and I am on a G-1 diet. That consists of Cheerios, Rice Krispies, bananas, peaches, pears, applesauce, broths, jello, plain mashed potatoes, steamed rice, plain noodles, tea, cooked veggies, white bread, bagel, English muffin, saltine crackers, Graham cracker, white dinner roll, chicken noodle and chicken and rice soup, skinless chicken, roasted turkey, hard boiled egg, tuna sandwich, ham sandwich, turkey sandwich. That's the G-1 diet. The G-2 diet is more of the same really, all the same fruits and breads, but I can also have instant oatmeal, Corn Flakes, frosted flakes, fruit loops, scrambles eggs, bacon, hash browns pancakes, french toast, pbj sandwich, hot turkey sandwich w/ gravy, grilled cheese, grilled ham and cheese, cottage cheese, mashed tater and gravy chicken strips, bakes chicken breast mac and cheese, roast turkey, and assorted condiments. Not a whole gourmet list, but hey, at least the G-2 diet let's me have a burger. Oh, and a soda pop! I can also have snacks like pretzels, vanilla wafers, rice Krispie treats, teddy grahams, Popsicles, jello, pudding, angel food cake, ice cream, sherbet shakes, sherbet, milkshakes, root beer float, and that seems about it. Well, I gotta go, they are coming into the room right now to discus the new med. The plus side of it is that it's 2 less shots a week! Some lost, some gained, I guess!

Kayla enjoying her quilt made by the Ladies of Good Shepherd Lutheran

Well all,
Kayla is a titch under the weather this evening. She has 3 new holes in her belly and a very sore throat. Surgery went well but the diagnosis was anything but good news. It seems we have a problem with Crohn's disease. Lovely addition to the list HUH? Just about floored everyone.
Docs are working on med changes and are still optimistic she'll be eating in a couple days. Transplant is still on track but delayed until........... She should be up and cruisin' in next couple of days and Kayla will post for herself .Thanks for all the thoughts and prayers!!! We would also like to ask everyone to Pray for Maggie. She had quite a terrible spill with her horse. We ask for healing prayers & prayers for her Mom & family. Thank you.
(dad) & (mom)
Kayla

Hello teardrops of my soul. Well, this has been the weirdest stay ever. things are being set in motion as we speak. I am scheduled for the procedure (I don't want to call it a surgery, since that might not be exactly what it is) at 2:00 this afternoon. They are pretty sure it is a bowel obstruction, and that this is a magic cure. meaning I will be eating Thanksgiving dinner. No promises, as usual. but whatever. Roll with the punches, go with the flow, ride the tide, ya know. Oh, and last night-and y'all may think this is pretty odd having thought of this poem during a Seahawks game (by the way they WON!)- but it had been stewing around all day, and I have a sudden urge to post it. I don't know how many of you know that I love writing poetry and stories, and have all my life. But that's besides the point. Any way, if this little ordeal goes over without glitches and the like, I should be eating by this weekend, let alone in time for Thanksgiving. Well, here it is , my masterpiece:

Thoughts
I think of all things I've not seen, And places I've not been.
I get low in the gutter, and feel I cannot win.
And then a nagging thought in mind, one I mustn't ignore,
"I have all these people around me, of whom I just adore."
Most of all my parents, they revolve around my life,
we've somehow stuck together through the worry, pain, and strife.
And all of my most closest friends, I miss them through and through,
but then I come to realize, that they may miss me too.
And of course I can't forget about my great church family,
they have a faith in Jesus, one I can hardly grasp,
It's all these things that tell me, this hell life sure won't last!

Love,
Kayla

Oh, my gosh. The weirdest thing has happened. There is a plan now made for mt stomach. Tomorrow they are going to do a laprascopic surgery. Not a big deal , though. It's similar to a gull bladder removable. Just a few different holes. I should be eating by the end of the week. I have to tend to some needs, and then I'll be back to share a poem........

Okay, third time's the charm, I swear. The long awaited pics have arrived! Just go to.......um.......http://www.picasaweb.com/tundratrees. If that doesn't work, just hit the My Photos link on my blog, right under RUTH'S BLOG (hint hint, hint hint). Well, bye fa realz now!!

Sorry, I just didn't want to seem rude and keep typing while I had a guest. Even in the hospital, a hostess is a hostess regardless. As I was saying before the oh so unexpected yet appreciated interruption.......wait, let me catch my bearings here..........ah, yes. Andy. I really would love that, more than anything right now, and I truly hope I can. Some old friends would be a welcome sight right now. Not that nobody recognizes me from way back when, I have people passing me by more often than not and waving. And don't think that I don't miss each of my little Alaskan buddies every second that passes. Well, I don't really have much else to say, other than my labs are doing their normal thing, a.k.a. not acting at all normal. As was expected, at least on my part, my lipase is trending upward. No big though. I'm not surprised. There are a couple less pleasant things to deal with. 1, I probably have a barium enima in my near if not immediate future. But on a little lighter key, I may get this stupid tube out today. I will post more later if the enima shows anything, or next time something comes up. Until then, pearls of my heart!

Oh, Andy, that sounds supurb! Ha, I am reading a book right now with a few words slightly on the traditional side. But that's besides the point, since I already like Old English anyway. I use it as often as I can, not that there are many chances in this day and age. Oh, the music guy is here! Hold on, I'll post after he leaves...................

Howdy everyone. Sorry, I've not been very talkative lately. I am back in Children's, hopefully not for long though. They are trying once again to figure out what is going on with my stomach. And what really bums me out is that I may not be able to eat Thanksgiving dinner! Just pray that I can, cuz that would so suck if I couldn't. I mean, it's not like I'm gonna go out and eat a bunch of fatty things, we'd alter it to fit my low-fat needs. That's all we can do though, is pray for the best. Anyway, not feeling to much like talking, so I'll catch ya'll later.

Upon requests of my adoring fans, I am now unable to hold off posting any longer! Well, we had fun last weekend, I'm sure most of you will already know this by talking to me. WE WENT TO RED DOG!!! Lol, it was sooooo cool! You aren't supposed to be able to go up there until you're 16, but of course my father was able to pull a few strings (heart strings, to be exact!). And he got me and mom up there to pull the winning raffle ticket. Congrats to the winner, Ron Hoyem. We got a full tour of the mine, and I got to, as I love putting it, "observe the prisoners in their natural environment". And the best best best part of it was............I got to make something blow up! They rushed and rushed to get a blast ready so that I, yes, little ol' me, could push the button! Oh, the POWER!!!! Other than dynamite, my life has been pretty uneventful. We head down this nest Sunday. Give all the details once we get there. P.S. pics are coming ASAP.

Can't be long, it's pretty late, and I've got a physical therapy appt. tomorrow. Got some good books the other day. AGain, I reccommend Fireside. I love their website name: goodbooksbadcoffee.com. Funny. Well, labwork is still NORMAL. Not feeling very chatty, I'm getting an infusion of prednisone. It makes me grumpy and hungry. I have to get two a week. We went to Hacienda's tonight for dinner. Yummmmm. Well, bye.

Da da da da! I now join my docs in giving up on me! My labs are all NORMAL. My amylase and lipase are both in the 100s, and my ferritin (a JRA and MAS marker) is back to normal too! My white blood cells are up, and so are my platelets! Tra la, tra la! But oops, gotta go now, we have to pick up my sister and take her to the doctor (for a change!). Then we will go to the book store, and maybe get some new used books with my points (If you've never been, i suggest going to Fireside books in Palmer, it is a wonderful bookstore. You can donate used books in good condition, and get points to put toward getting other ones!) Oh,and how many people did I surprise when I showed up at confirmation last night? Well, SURPRISE! Until later, my doves!

Ooooooo, hi Andy, hi Laura! I have missed you guys soooooo much! Church feels so different without you guys. And I know I'm not the only one missing you, either! Thank you so much for finding the time in your busy move to post! It makes me feel all warm and fuzzy inside! Well, I'm happy to say I feel very good. It's a wonder what those IVIGs do for me. I can go up the stairs with minimal pain (it never goes away completely. I know some of you readers understand me!), and my numbers are continuing to improve. I have been out of the prison for 9 whole days, a record since Seattle. Well, I am gonna sign off here. I'll chat later, though!

Sorry, I don't know where the time has flown. I was going to post Tuesday evening, but never got a chance. Then yesterday was such a day of bliss, we didn't have to get up early to come into town or anything. So naturally I wasn't able to sleep and was up at 6. Whatever, it just guaranteed a better sleep last night. All the way through to this morning, where I didn't want to get up at all. But duty calls, so here I am on the hospital's computer waiting on my IVIG (review past posts to find out what this is, or go to http://www.wikipedia.org/wiki/Intravenous_immunoglobulin ). All my other labs came back fine, besides my white cell and platelets being a little low. My rheum. doctor wanted to do cultures because of this, and so therefore I had to get stuck four times for 1 cc of blood! That sure made my day, I tell you what. Well, now I have to go because they are about to give me Benadryl, so nighty-night!

Well, it's official. All of my doctors have given up on me! My numbers went back down today! The amylase is in the 400s, so it's gone down like 400 points. the other markers are still pending, but I'll post them when we know. Not much else to say, except it's my 4th day out of the hospital, in counting! Yesterday, we saw one of my nurses in Starbucks! We all agreed it was a much better place to stage a run-in than the PICU. Then we saw the PICU doctor, and she said about the same thing., I think her exact words were "Were you surprised to see her outside the hospital? Yes, it seems that people think us and teachers live where we work!" (I don't know about anyone else, but I didn't necessarily think they lived at school, but I didn't think they had lives outside of school! You know, go home, grade papers, eat dinner, read a book, go to bed, get up, go to school, come home, grade papers, etc., etc.) And I am now on clears......again. The reason they have "given up on me" is because my numbers are doing their usual wacky business, so can you blame them? No symptoms, skyrocket numbers? They also dropped this little bomb on us this afternoon: we are going to have to go down to Seattle sooner than we thought. They can't do a certain procedure up here, and for some odd reason, they seem to think this one will have all the answers to solve the riddle Rick and Jeneice Cornejo named Kayla. When, you ask? I ask the same thing! One thing is for sure, they don't want to wait until we go down in November, noooo, they need it done ASAP! We may have to go down there, but we are coming back before November! I should be posting tomorrow, I have an appt. with my Rheum. doc. Until then, my loving followers!

Hello to all and to all a hello! Not much new in our neck of the woods, but I figure I need to keep up anyway. I can bore you to death with what I've done since getting out. Absolutely nothing! We've had to go into town both Friday and today for blood draws, which has proved unpleasant. Not because of line issues or anything, but my numbers are totally whacked out. My pancreatic markers, my amylase and lipase, are out the roof high. They are supposed to be in the hundred range, and one is 1200 and the other is in the 800s. not good, at ALL. And yesterday we had a bit of a scare. My stomach started cramping again, so we were kind of freaked I'd have to go back in. We called the doc and she said take some morphine, wait a while, and call her back. After I took my second morphine, I started feeling better, so it was a close call, but we managed to go two days without readmission. A down flip is that since my numbers are soooo high, I am back on a strict Pedialite diet until they come down, and we won't check them again until Monday! Blech, and I thought non fat was bad! Well, enough complaining for one night, I'm waiting to talk to a woman about a goat (get, it? Instead of a man about a horse? ha ha ha.......) See you all in church tomorrow!

Okay, now I REALLY feel loved. I have such an awesome circle of people in my life, and you know what they say about circles (they're the best shape because they have no end!) Well, I don't want to get any one's hope up, but it looks like I will be getting out of here today. If not, then first thing tomorrow. I have had three meals so far, with nothing gone wrong. I think what is helping is these enzymes they are giving me to take, so that my pancreas doesn't have to create them. I am not on a low residue diet anymore, but I am on a non fat diet. When I think about it, it's a good way to lose weight! There is so much more food available to me on this diet, believe it or not. Almost everything made now can come in low or non fat, even chocolate milk! There's something I remembered from a conversation about the transplant. They actually wanted to start the whole process on the 18th of October, but we said no, because I want to have a little time home before I go down for another half a year (well, 4 months, but that's if everything goes perfectly. I'm making it a little wider range, maybe 4-6 months)! One more thing before I go: there is a woman coming down to my room today to talk to me about my "unpleasant experience" in the OR when they redid my line. Three squealing surgeons, here I come!!!

Okay, big big big news. The whole transplant thing? It's already set up! They've got housing arrangements, procedure arrangements, and blah blah blah. The donor is still willing, and is a young strapping dude who is raring to help me. We go down on November 7th, November 27th we start the actual treatment prep (two weeks of it), and after that the actual procedure is on December 7th. We have to stay down there for at least 100 days, maybe more, depending on how well it all goes (which it is going to go smooth as glass!). The whole thing isn't crystal clear, and I will update as needed. Another comforting thought is that whatever Medicaid won't pay for, the hospital will pick up the rest. We don't even have to get rid of any of the animals! It seems like this thing is already thought through by the Big Guy. I'm anxious, but not in a bad way. It's just all happening so fast, it's a whirlwind of thoughts! Oh, and they are letting me have chicken noodle soup and crackers!!! The day is good!!!

Howdy ho!! Okay, so maybe life doesn't suck as much as I thought it did. I have my family with me, and even though I'm in the hospital, at least I still feel good. I've got oodles of people who care about me, and here with me a mom, a dad and sister, a grandma and a grandpa, and another Father that cares about me. I'm loved, so I'll live. It was tough, but then I started thinking, and I thought why spoil the whole day. The hospital threw me a party, and gave me flowers and a 20 $ gift certificate to Best Buy, and mom and dad and Nonie and Ralph (grandma and grandpa) threw me a little one, presents and all. Then today, my sister came in and we are having a slumber party. Both nights we had treats, and there haven't been any complaints from my body. I guess all I'm saying is maybe I should count my blessings, while I have them. Really quick, I'll give you a little inventory of my gift list: a book, a horse magazine, four pairs of earrings, two pairs of socks, a game for my game boy, a really nice pen set, two mechanical pencils, a notebook, a deck of cards, two more pens, a wind chime, five tiaras (one that lights up), a wand, eleven singing nurses, five grunting doctors, three squealing surgeons, jelly belly gumballs, a needlepoint kit, a blow up guitar, and a partridge in a pear tree!!!! And we can't forget the no Pudge Fudge brownies! With frozen fat free cool whip. All in all, my day wasn't really as bad as I made it out to be. And before I go, I want to emphasize how grateful I am to have such wonderful people in my life. Ruth, you always know what to say. Corrine, you find light in the darkest places, and HAPPY BIRTHDAY MAGGIE!!!! Katrina, you're such an awesome friend, and what would I do without my family, (Aunt Kat and Kristy!!!) Oh, and I don't remember if I mentioned, but my line is doing much better, and there is a complaint being set into motion (I did say there were three squealing surgeons, did I not? I just never said why they were squealing, MUAHAHAHAHAHAHAHA!!!!) Okay, maybe I've had one too many brownies, I'm starting to sound like a sugar maniac. I am going to leave you now with the knowledge that no matter what, I am always blessed with the best of life!!!

I hate my life sometimes. Can anyone guess why? Yep, I am in the freaking hospital on my birthday. Of course. The one day of the year I don't want to be in here (not that I want to spend ANY in here, but I mean, come ON!!! my BIRTHDAY?!?!) How much crueler can the world be (notice I haven't brought Him into my angry conversation)? Well, three major things, then I will post when we know more. And just to clarify, I haven't been neglecting you, there just hasn't been anything to post. Now there is.

Thing # 1: We came in for a blood draw, hoping for the best, but expecting the worst, and setting somewhere in between. First the little rat bugger wouldn't draw......as usual. Then they did a peripheral stick, there wasn't even a flash. Then they TPAed the line, and this once (we've done it five other times) it helped. So they drew, and then my numbers came back waaaay bad.

Thing # 2: They redid my line. One would think they would read my chart and find out that both the sedation meds they had set up for me don't do a darned thing, but NNNOOOOOO!!! Can anyone guess what happened? Just like the last time they used them, they DIDN'T WORK, and so therefore (DUH!!!) they didn't work THIS TIME!!! Now, if we put 2 and 2 together, we figure out that just like when they placed the PICC line in, I felt the whole procedure! Can you say OOOUUUUCCHH??!?!?!?!?!?!

Thing # 3: This is a prime example of saving the best (if you think of it in the way I am) for last:
They apparently have found a preliminary donor for me. This means, for those of you out there who are a little slow, that they found me a donor match, and I could possibly get a transplant. It would be quite a while before any balls would roll, but it would mean some marbles would move. First I have to been as healthy as I can, meaning no more infections or whatever. Oh, and the difference between a preliminary donor and an official donor is that yes, it's a match, but that is just from the list. We don't know if they are still healthy, still willing, or even (I know this sounds odd, but it's not impossible!) if they're still alive! So, they are looking into it, and then they're going to get back to us. I am still having mixed feelings about it. There is a twenty percent chance I could die from my disease (which I was unaware of until now), but there is a twenty percent chance that this transplant could kill me. Here's why I'm still kind of stuck: there is an UP TO 50% CHANCE that I could get Graft VS. Host (GVH) disease, which is where the host (me) rejects the cell (grafts, I guess). But they do have treatments for it. If the mortality percentage is the same both ways, and there is a good chance going through with it would put me into remission (not near as good a chance, but may also cure me).

Well, now that I've gotten that all out in the open, I am going to go enjoy my birthday (you do not want to hear my tone of voice right now, trust me). HAPPY BIRTHDAY TO ME, HAPPY BIRTHDAY TO ME!!!!!!!

Hello, hello, hello. How are we today? We are splendid, right? Right? Well, we would be better if we coulod eat, but hey, it looks promising for getting out of here for my birthday. Maybe even for tomorrow! I sure hope so, I was really looking forward to that party! I won't be able to eat anything, but I didn't plan on stuffing myself with chili and cake anyway. The only thing I can really have is non fatty foods, and that's when my numbers are normal again. We haven't gotten them back yet, but I will post them ASAP. I also have some really really really big news, but I'm gonna make you wait! TA TA for now!

Okay, so I've finally broken down and learned how to read my lab results! I mean, why wait for the rents when I only need to know what a few numbers mean? and besides, they have an H or an L next to it to say whether it's too high or too low. But anyway, most of my numbers are coming down. At least, all the ones that need to. my Amylase and Lipase are two markers for the pancreas, and they are coming down nicely. On the twenty-fourth, it was Lipase 407, and today it is 281. Amylase was 638, now it's 457. If they keep coming down at this rate, there's still a chance I can make it to Ruth's party. Even if I can't eat, I'd still like to come! They seem to think if I am not out of here by then, I will most definitely be out by my birthday, but that's only 2 days away from each other! But whatever. At least my line drew nicely this morning. She didn't even have to wake me up to stand me on my head or anything (no joke, they really did tilt my bed up so that "gravity could contribute to the blood flow up to my line. what kind of bull is that? All it did was give me a headache!)! Maybe there's hope for me yet. speaking of, my headache is gone, and I got rid of it without acupuncture! (I don't know why, but I just really don't want to do that). Well, keep praying, it seems do be doing some good! By the way, if you haven't noticed, my birthday IS in a few days (hint hint)! Gotta, go, child life is here, there is a therapy dog that I think is soooo cute! She's a corgi!

Okay, I am sooooo confused right now! The GI doctor said today that the first two admissions were not pancreatitis. The first one was teflitis, and the second was for God only knows. This one is for pancreatits. I just don't see how he sees his plan. He thinks that if we wait for my pancreas enzyme numbers to normalize, and then I can eat, get out of here, and everything will be honky dory! I really don't see how that is possible though, since the last three times we have tried that it hadn't worked worth a darn! But hey, he's the doctor, right? He seems to think that I will be out of here by my birthday, if not in time for Ruth's party. I just have a hard time putting all my faith on that little string of hope. Maybe I should though. Maybe it is a God- thing, and if I do the whole full faith thing in Him, then it will all work out, and I'll be a happy healthy kid in time for my birthday. Now that I put it down on paper (or in this case, keyboard and monitor) it sounds even more far-fetched. Well, on a happier note (which I always try to leave you guys on), My line drew like a champ.......yesterday. Today, it drew a little bit. The trick? Holy water from the church my Grandma goes to. Another really awesome thing is that Ralph's (My grandma's husband) friend is going to Rome, and He is going to have them pray for me. Can't get much closer to pure holiness than that, can ya? Just keep praying, I really want out of here. Being sick has made me miss so much of my life already, I will not let it spoil any more.

Phooey. They let me eat, but I cramped up almost immediately, so now I'm NPO..............again. I highly doubt I'll be out of here for my birthday, which thoroughly sucks. The longer this takes, the less faith I have. But I guess all we need to do is keep praying. Hard. That and they are really pushing for that tube. Ans Seattle is frothing at the mouth to get me into their clutches, but I won't go down at all, and if I have to, then it will be AFTER my birthday. I don't mind the fact of being in here for it as much as I mind not being able to eat. I mean, I've been in here for Mom and Dad's birthdays. On a happier note, my line was nice to us today and gave some blood!




to hopeinalaska (Corrine and the group),
I'd love a visit, but hopefully I won't be here. I am always open to visitors, it makes the time go by much faster! (this may sound mean, but I'm not surprised it's only us left. Some of the people last year were really lacking in faith, which is really unfortunate. Faithfully is the only way to live!) But most definitely, I'd really appreciate it.

Nobody can possibly be as pissed off at the world right now as I am. They not only won't let me off clear liquids, but they want to put in a feeding tube (here's the link to see what it is, although it's pretty self explanitory: http://www.oralcancerfoundation.org/dental/tube_feeding.htm , so I hope this link works). I'l let everyone know what the outcome of that will be. In the mean time, keep praying I get out for my b-day!

To HOPE IN ALASKA:
I would love the information on the confirmation classes. I really miss coming. Hopefully soon I will be able to return.
Thanks
Kayla Cornejo

Well folks it's another day in ICU. Got neck bone lockup syndrome. Maybe from meds again. They seem to be the evils these days. Good news is they dose me up with a drug called versed
that makes me real goofy but my neck can move again. They have figured out one of the bugs growing. Hopefully they will figure out the rest. I am on clear liquids today. If my blood work numbers look good I may be able to move up to full liquids. Anything is better than NPO(NOTHING BY MOUTH!)
Andy & Laura pick Dad up from the airport. It was nice to see them before they left. We all hope & pray they have a safe trip to Kalispel. We will sure miss them.

Ok, so we have good news, and bad news. that's how it always has to be though, right? One: They thought I might have meningitis, but I don't. Two: I have some sort of infection. it might be on my line, it might not. Three: My line is working, sort of. It will let things go in perfectly fine, but drawing blood out of it is a different story. Not much else going on,. it doesn't look promising being out for my b-day, but I'll let everyone know when things are more clear. love to all, Kayla and fam.

I really don't feel like it, but I'd better, just to let everyone know what is going on. Well, they took a film of my stomach this morning, and the outcome isn't very bright. It looks like some of the contrast I drank on Wednesday is still where it was today as it was then. that means that my bowel muscles aren't working properly. There are a few different ways of handling this. One is, of course, medication. Another is surgery, but who want to have that kind of surgery? So what they said is that it might be the lipids that are keeping my pancreatic numbers elevated. If that's the case, then we should be able to control it with meds, I think. They are going to stop my lipids and then take another film either tomorrow or Tuesday. If nothing has changed, then she will let me eat, and see how long it takes for me to get sick again, which is a blessing and a curse. I am allowed to eat, but I know it will make me sick eventually. the good news is I can have whatever I want to eat, once I'm on the full diet. There are also a few steps until it get s unbearable. I am either happy, healthy, and out of the hospital, here and sick, in Seattle and happy and in the hospital, or sick in Seattle. I really want to be out. Not just to be out, but it's my B-day in 15 days! Oh, and if you couldn't already tell, I doubt I'll be in confirmation very soon. Just pray that I can get out before my birthday. I don't care about any other holidays I have spent in a hospital (almost every one), but my birthday cannot be one of them!

Good news turned bad. I am back, after freaking less than twenty four hours, in the hospital! My gut is still messed up, and hopefully third times the charm. They think it might be another one of my meds causing it. but now they seem to think it's lone of the ones that has been helping me. But who cares,? Linda and her hubby (from Good Shepherd) visited me today and gave me a gorgeous bouquet of fresh cut flowers from their own garden! And, having said that, I wouldn't mind a visit from anyone really. Mom and dad can only be here so much. And on a better note, I agree with Ruth.....we all look better bald, and everyone should have to do it at least once. I mean, heck, Andy's done it! My dad is (partially)! Well, I haven't been feeling too bad today, so..........Well, at least5 every time I come in here, my symptoms get better faster and faster. Maybe they can finally figure this thing out, even if the outcome isn't what we'd have preferred. I guess just hope for the best. I'll update as needed.

Ha, we have good news and bad news. Good news: we are getting out! Bad news: we don't know why. They did a biopsy while they were in there, and they are still processing the results. We figured we could wait for them the grow their bugs at our house instead of here. So hopefully they can figure this thing out soon. Well, good news is it doesn't matter what I eat, it will still flare up whenever(not really that good of news, but at least it isn't anything we did)! Well, I've gotta go watch Brittany Spears' big mess ups and stuff. one thing I have to say about that: Who looks better bald???

boy does mom know me well! it is around 7, and I am back in business...........sort of. Mom pretty much said it all, but I can't let down my adoring fans. now, adoring fans, I must go watch scary movies until my eyes pop out with fright! BUNDLES OF LOVE!!!!!

Kayla

Hi Everyone! Kayla is pretty much out of it. So I will try to update you. (Not as good as her own words & feelings!)
She had endoscopy & colonoscopy this afternoon. No Crhon's!! Thank GOD. No Ulcerative Colitis. A few spasms in her colon. This could be from one of the 19 drugs she takes. They took
a lot of biopsies. We should know the results by tomorrow or Wed. She will be able to start eating regular food by tomorrow, slowly getting back into it. That will make her HAPPY!
She will probably have a lot to say when she is up. Thank you for all your Prayers. They are all we hang onto sometimes.
Take Care
Rick, Jeneice & Kayla

http://www.emedicinehealth.com/colonoscopy/page3_em.htmHi, it's gotta be quick, cuz I've got a Nazi Nurse tonight. Don't worry, it will be. Omg, this has got to be one of the worst procedures I have gone through yet. I'm sure you all know what a colonoscopy is, but for those of you that don't, here you go: http://www.emedicinehealth.com/colonosopy/page3_em.htm . It pretty much explains it there, since I really would prefer not to go into great detail on here. The good part of it is that I may be on a full liquid diet by tomorrow night. It really sucks though, because part of the prep for this test is I have to drink this contrast that has a laxative in it, and it tastes exactly like warm salt water. BLECK!!! The only reason I can tolerate it is that I will be able to eat (hopefully), and at least I will hopefully find out what it is. Just please keep praying, especially for strength for me to keep my cool. I love the staff here, i really do, but a girl can only take so much before she cracks! Love to all,

Kayla, (oh, yeah, and Rick and Jeneice too)

DUN DUN DUN..........................no more good news, yet. I had a central line put in yesterday. (that really hurt!) It is called a Hickman, and if you want to know more about it, go to http://wwwcancerhelp.org.uk/help/default.asp?page=2586 . I also have to get a colonoscopy on Monday, so i can't eat until then, that is if they don't find anything to interfere with anything. It was a wonderful surprise though, because Andy and Laura came to visit me on Tuesday night after they dropped Andy's uncle at the airport. Then today, an even better surprise was that Ms. Velma Peck came to visit me. Well, I'm gonna go now, my Hickman is still pretty sore. By the way, speaking of THAT, I suggest you don't research it if you have too weak of a stomach (although this website isn't too graphic!) See ya'll later. I probably won't be on until like Tuesday, cuz I will be pretty unsociable until then. Gotta go, my doc is here!

Hi all. more bad news. I'm back at Prov, still not sure what is a going on. They seem to think it might be Crone's Disease, but I'm already on the treatment for that. They want to put in another PICC line. Joy. But whatever, all I care about is figuring this mess out. I am still unable to eat. Dad went back to work yesterday, which is a bittersweet thing, since it would have been wonderful to have him here. He let's me watch scary movies. Well, I think I'll be leaving now, I've got a 10 $ bet going with the child life specialist to see if I can be the first to find all the items in the find it tube. there is all the alphabet dice, a pony bead, a penny, a balloon, a baseball, a block, a butterfly, a candy cane, a car, an eraser, s top hat, a marble, a pom pom, a rubber band, a wiggle eye, a safety pin, a smiley face, a flag, a fish, a star, an egg, a ring, and a snowflake. I only have to find the penny, the butterfly, and the marble. Wish me luck!

Hi HI! another update, but not near as boring this time! First off, w3e went to the fair Saturday. We had lots of fun there. we were going to go to the rodeo, but by the time we got there, they were sold out. no worries though, we still had a great time. We saw quite a few people we knew, including Ruth and Anika. I guess Nathan and Todd were in search of a funnel cake to satisfy Ruth's fix. We then saw my old doctor, the one who oversaw my chemo while I was doing it. They were in search of ice cream, but their search was unsuccessful (they found it, but didn't want to wait in the long line). i also saw one of my BFFs, Katrina. Naturally she would be there, since she always enters her animals in the exhibits. It was quite exciting, though, cuz her pig was in labor! I got my face painted, which most of you saw at church! I forgot about it completely until someone came up to me with a comment! It was a bittersweet service though, cuz although I was finally back, it was farewell to Andy and Laura =...( They will be missed, but never forgotten.


That was Saturday and Sunday. Monday was nice, we had a birthday dinner in honor of my parents at our neighbor's house, which was delicious. We had cheesecake for dessert, with blueberries from our property. Then today, what a fiasco! at 10:30 we had to be in Anchorage at Prov for the Mother of all Blood Draws. 12 tubes! That was roughly 57 CCs! Then we went to Costco to pass the time, cuz we had another appt. w/ the gut doc at 3:30. That went well, and I am thrilled to note i am on a less strict diet. I can't go out and start eating nuts and popcorn and broccoli again, but it won't be near as straight. Thank heaven, I was beginning to wonder if i I would ever eat veggies again! Well, won't be posting much, we are going to Denali for Mom and Dad's anniversary. will post all about it when we get back on Friday. Well, I'd better go to bed, we have a big day starting early. Nighty-night!!

can't talk for long, got a lot to do, but hello! I am out of the hospital.......again. So far so good, and we hope it'll stay that way. Not much else going on, it seems pretty boring again, not that that's a problem. We think we'll go to the fair for the rodeo. We were going to go today for the demolition derby, but we got up too late. Oh well, rodeo is better anyway! Well, I'd better get out and enjoy the sun while it lasts, and we have to leave for the dumps anyway. Gotta go help tear apart our bathroom so we can throw it away now!!

Well, not only is everything going considerably better, but it looks like I will be discharged.................TOMORROW!!! Yes, I am only on a low fiber diet right now, (not that it's easy top avoid fiber these days, what with everyone promoting it and putting it in their food) but WHO CARES??!!?! I can go home again!! This time hopefully I can stay out for a while. I shoiuld be getting my next IVIG in a couple of weeks, so hopefully that will give me the boost I could use. But yes, I have been on this diet for a few days, and so far no pain or nausea, so we're golden!! They were able to wean me off of the TPN and lipids, and switched me back to a lot of my oral medications. Home free tomorrow! Just keep up the prayers that we can stay out. All the labwork is going great, though. We have a follow up appt. with the GI doc next week. Wish us luck!!

Life is still in Suck Mode right now. No, I can't eat yet. Well, I can have full liquids, but how much more different is that from cledar liquids??? I got another CAT scan today, so we'll see if they even let me have some chicken noodle soup. I am so sick of broth and Jello. I've got to go, they won't stop coming in here. Next time they come in and it isn't for meds or good news about food, off with their head!! Don't mess with me, I mean it. The only food they send is cream of chicken, cream of celery, pureed potato, mashed potatoes and gravy, Jello, and pudding. Whoopdi-friggin-do.


P.S. Mom's b-day was Sunday, although we didn't have anything but nasty mashed potatoes and gravy. All I wanted was some real food, but I can't even get that right now. And here I am complaining when I should be thankful I don't have to be completely NPO. BUT IT'S NOT FAIR!!!

I hate the world when I jynx myself!!! Not only can I NOT eat anything at all, but I have the stupid PICC line anyway!!! Why bother anymore? I can't seem to hold onto anything good anyway, so why should I set myself for trauma by getting my hopes up when they're just likely to come crashng down around my butt!!! well, I'd better go, they just brought me a WHOLE TRAY full of sodium free broth!!! Sorry about my current on fire-ness, but S-C-R-E-W T-H-E-M!!!!! At least they have a pick and choose of what they can have!!! (They say you can't get physically sick from hunger, but tell that to someone to whom it hasn't happened!!) Gotta go, my broth is getting cold................

Sorry, I didn't finish the other day. They say I can eat tomorrow, not much though. hopefully I can convice them for some taters! I mean, if I can do Jello, what CAN'T I do?? Lol, nah, but still. I am getting sick of broth and sugar free Jello. I wish I could have some clam chowder tomorrow, it's my favorite!!! I'm gonna try and convince 'em, wish me luck!!!





And we know it's not C-DIFF, so we're cool. It could be caused by anything, with my immunosuppression. It can't become that, since I'm on the treatment for it.Thank God, I don't think I could have gone through that again! I'll give another progress report soon, I promise!

Hi, everyone..........good news and bad (more bad, unfortunately). We went camping in Homer last weekend. Our friend, Pat, took us out on his boat. I caught a couple halibut, which is all I wanted, really. Then Dad's b-day was on Sunday. That was fun. Then we had a court hearing on Monday for my sister's gaurdianship. That's when it turned ugly. I am now in Porvidence, awaiting answers. I'll let everyone know

Howdy everyone! We're home, safe and sound. It's such a beautiful day today, so I won't take up your time and mine with a long droning post today. I'll save that for when it's rainy. But basically, not much else has happened since we got home, I have to get bloodwork today, but that's about it. Thank you so much for the continued prayers, they mean the world!

Hello!! well, we got the results back, and, duh, duh duh duuuh!!! They switched the dosage, added more antacid, and bada bing bada boom, we're back in business (hopefully)!!! Just in case, the doc ordered an ultra sound of my abdomen, just to be safe. And now for the best news I have ever given (lately, anyway) WE'RE COMING HOME!!!!!!!!!!!!! We have this next week of therapies, a final visit on Friday, then we're homeward bound. Been a long time coming, but we're on our way!!!! The only bad thing about it is that we have sooo much stuff to pack and haul home, it's not even a joke! A small price to pay, though, for being free........................

Hi everyone! good news and not so good news. Me and mom had a blast at Aunt Kat's this weekend, Happy Birthday Sammy! The big 1-0! It was super hot though, and humid toward the afternoon. The not so good news is that the new med might be causing problems with my pancreas, and we might have to get op0of it if it keeps acting up. I hope not though, since it's been the only thing that seems to be working. We get the test results back tomorrow, so pray and keep your fingers crossed it's just been a bad case of indigestion or something!! I'll let you know what the results tell us, when we do get them back.

Hello hello hello. There really isn't much at all to say, but I figured I would update anyway. Can't disappoint my expecting fans, can I??? I really and truly can't think of anything new, but there should be some news coming up on Friday. In the meantime, visit Ruth's blog and see how she's doing!!! Until then...........

Hey ya'll. Yesterday was a mad rush, so I had to wait until today to blog. I had a transfusion of IVIGs (these are immunoglobins, they don't know how they work or why they work, but thank God they do!). We went in and it was only supposed to be a few hour procedure. We were there until 3 this morning!! It was a major bummer, cuz Michaela was passing through, and we were gonna hang at the Ron Don. But nooooo, things got screwed up, as usual. No worries, though; life goes on. Just have to hope the next thing goes better. But it is 11:30, and I am utterly exhausted, so I'll sign off here. Ta ta for tonight!!!

Hello everyone. Not much to say, it's been pretty calm around here the last few days. If you haven't seen the news, it is hot hot hot here. They say it's gonna get up into the 90s! only three more weeks and we get to find out if we can come home or not. I hope so. I miss my bed and my dog. Well, breakfast is here so I'll let you go, be on when something changes.

Okay, it may not be as long as I promised, but I have company, and I can't neglect my company can I?? The fourth was......an interesting experience. We were supposed to go over to Bainbridge Island and go to this whole fair thing, but by the time we found our way, the fair had closed. So then we just kind of drove around Bainbridge half lost, and stumbled upon a little beach. Since we were there and hungry, we hiked down to the sand and ate sandwiches (mine was authentic). It was nice though. There weren't many people at all, and the weather was perfect. I found tons of shells, I'll have to take some pictures of them and post it. After we were done with our gourmet dining experience, we headed back just in time for the 9:45 pm ferry. From then on it was smooth sailing, really (no joke, the water was super calm). The best part was the fact that we could see about three seperate public firework shows, as well as dozens of private ones. They had those puppies firing off left and right. Half the works you couldn't see from the previous smoke trails!! That concludes our somewhat traumatic yet oddly pleasant 4th of July. Hey, I am not going to complain at all about my first holiday as a free woman!!

Howdy to all. Kayla, Mom, and Dad all here together. Dad got in safe, through all of the heightened security (due to the terrorism in London the other day). Grandpa John, Trish, and Brandon are driving in sometime tomorrow, and are gonna be here over the 4th. Ever heard of Halibut Tacos?? They're supposed to be good, so we're gonna have those for dinner tomorrow night when they get in. Mom wants to go to this little island for the fourth, since there's supposed to be this big celebration fair thingy during the day, then fireworks after. It should be fun, I think. I probably won't be on till after the 4th, but I'll try. If not, there will be a long and descriptive post on the 5th or 6th, I promise!!

Ok, it's gonna be a quick post today, but I thought I should update since I was whining about never being commented on anymore. I got a load of them after I started complaining though! Keep them coming, I get lonely here in cyber land. Today is a lovely Saturday, but it is being spent mostly on getting the room clean and ready for visitors (Dad). Later we will go out and soak up a few rays (if the weather doesn't turn on us, that is). Dad gets in tomorrow afternoon, so we must get prepared today, no matter how nice it is. All is going well medically, we went up on the Cellcept (new med) today, and we went down on the Prednisone in a way (we didn't go down, par say, but we switched from 30 mg a.m. 10 mg p.m. to 40 mg a.m. 0 mg p.m.). Well, I'd better get off and help mom with the paper work, since that's about as much help I can give right now. TTYL, my good friends!!

Now what's up with this?? Nobody loves me anymore!! I guess so, since none of you have commented. Come on, I live for the comments. It's how I stay in touch with you folks back at home! Well, not much really to comment on, now that I think about it. Life here right now is pretty boring. We haven't done a whole heck of a lot, meaning getting out and seeing the sights. Enjoying what's left of summer, ya know? We wake up, come over to the hospital for therapies, go back, and, well, kinda just do whatever. Mom's been having monster headaches the past few days, so that has kind of put a damper on the good moods. Today is a gorgeous day though, and I am waiting for mom to get done with her massage so that we can go have a nice lunch in the 80 degree weather. Hopefully we can do something outside today. I just hope this massage helps her headache. She needs some relaxation, and a break from those stupid migraines (and so do I)!!! I think I may have to sign off here, I just spilt my Skittles! =...(

Two whole blissful days of freedom!! We've been settling in over the weekend, it's been kind of slow. Trying to get the room livable for two people again. Mom spent most of her time out of the room, so space was not an issue until now. It was of course a fiasco trying to get discharged, but we finally made it. We were written down for three o'clock, but that turned into more like ten o'clock. There were these people who needed to use my room to test some equipment to assist quadriplegics (voice activation systems and stuff). They were allowed in my room from 12-1 since that was when I was out of the room (we had a meeting with someone at 2:30, so they were supposed to be gone by two). They didn't even get there until like 1:30, and by the time the meeting was supposed to start, they were still there!! Mom couldn't pack anything and the lady couldn't get to my respiratory equipment b/c those dough heads were in the way! I couldn't even fit in my own room, I had to sit out at the nurses station. Finally we had to kick them out, just so we could get in the room and learn how to work the home oxygen supplies. Not to mention we still had to pack up months worth of stuff. Speaking of, Mom deserves a huge round of applause; she hauled two wagons full of crap back and forth b/w the hospital and the Ron Don by herself, walking, 4 times! It wasn't until the fifth load that the nurse noticed mom doing it herself, and was kind enough to inform us that security was supposed to help us with that kind of thing. That made the last trip much easier, since we were able to fit both wagons and us into the van in one trip. Silly us not to think of it before though. But hey, we were later than expected, but we made it, and haven't been back since. Mornings are gonna be a little tough, though. None of us are morning people, and I have scheduled meds at 7 am (especially Sundays, cuz I have two meds, and one you have to take on an empty stomach and stay upright for at least 1/2 hour afterwards at a forty five or greater degree angle. Yuck, I know. But this med is worth it, since it's to help my bones build back up and recover. Listen, I have to go eat and take my morning cocktail, but should be back on later or tomorrow! loves to alls, kayla (and mom, of course!)

Sorry sorry sorry!!! I tried to post yesterday, but the stupid Internet was down. Now, do I have to remind anyone, or do we all remember what day it is today??? I'll let the ya'll figure it out, and if you don't know, shame on you. I've only been talking about it in nearly every post for about a month! But anyway, onward and upward. Yesterday and today there were huge accomplishes made. Yesterday I did ten minutes straight on the stationary bike, then popped right off that and did a flight of 4 stairs, up and down, TWICE!! (most importantly, there was no pain involved whatsoever!!!). Then today was the first day I got in AND out of the pool using only the stairs. It was a little tougher, and a little painful, but nowhere near enough to keep me from staying at it (and it is so much less trouble than the chair lift). Even though it won't be nearly as busy, or as structured, I still have a schedule for out patient therapies every day for the next 3 weeks (weekends off, of course) !! School is at 10-11 every day, OT is twice a week and PT is twice a week (I think), not counting Wed. pool time, which is pre scheduled. Then of course there are my outpatient clinics with the Rheumatology docs whenever they are scheduled, and I'll still be seeing an out patient psychiatrist (barf). And who could forget the famous (or do I mean infamous?) Monday/Thursday blood draw schedule. This is pretty much my plan for the next 3 weeks, then we'll redo all the evaluations and the like. I wish I could come home for the 4th, but that is highly unlikely. Maybe we can do something fun. So long as the family can be together I'm happy, but I don't know if that is possible with dad's schedule for work and everything. I'm just gonna keep praying that it's part of thwe Big Guy's scheme to have us together as a family again (and that is including my sister, who is still a part of the family, moved out and independent or not). I miss everyone so much, especially the church fam (and of course my blood relatives, and friends), but things'll get better, they already are! I have to go get ready for *gasp* another therapy, then another, and then the rest of the night will be pretty busy, but I will most definitely be on Sunday, if not tomorrow. Love to all,
Kayla

Hello hello! First off, I would like to point out only 4 more days until discharge!! It looks like it's still a go, since they are doing a sleep study on me tomorrow to find out the exact pressures I need for my C-pap (the machine they use to help my lungs expand more, so that I don't have to work so hard to breath while I sleep). They have a special person to arrange all the discharge stuff (like a shower seat, wheelchair, etc.). These are all pretty good indications that I'm still leaving. One thing we heard today kind of sent up some flags for me though, but I'll get to that in a minute. Just like every other day, I have new complaints: this morning, they sent me one of those instant carnation breakfasts. One, it was strawberry (I specifically told them no strawberry, or vanilla; strictly chocolate) two, that was ALL they sent me. They really expect me to be able to work out without keeling over, running on an instant breakfast. I know a good way to give me my protein: BRING IN THE FREAKING BACON!!! Sausage, eggs, something. I know there are tons of food that are full of protein, and they do have them here. I just have to find out where they hide them.......That was one thing. I was able to take my frustration out on the speed bag though (OK, there has been some confusion on what it is exactly, but it's like a punching bag, and it looks like the thingy in the back of your throat, the hangy bally thingy that I don't think has any significance, but whatever). Then I am whisked off to school, as usual, or so we thought. Turns out somebody forgot to change the Master Transport Schedule chart and it said I had pool every day BUT today (my PT last week swore up and down she booked it for every day this week, including today). It turned out OK though, since I got in an extra half hour of school, and I was still able to swim for about 15 minutes (they were lucky I was thinking this morning, since I put my suit on when I got dressed, knowing I would be going straight from school to the pool). Well, hopefully there won't be any schedule mix ups for tomorrow, which I don't think there will be since I don't have school. But I do have an outing, so hopefully that goes well. Only 4 more days.................can you believe it?!?!?!

I'm back, as promised. Where was I? Oh yeah, the 3rd floor mix-up. Then after that we had speed bag (here's where it got fun). The speed bag guy (his real name is Mike, he's a doctor that donated the speed bag to the hospital, and he volunteers to come in and teach anyone who wants to learn) came today and I had a blast. If you ever get a chance, I seriously recommend trying one out. They are a great way to vent, which makes it perfect for a person like me who needs a good way to vent. I got to show mom how to roll, which I think is the best technique (so far at least). But anyway, Mike said that I was the best he's ever seen (best beginner from rehab, at least). We are going to try and set up some outpatient visits too. Speaking of outpatient, it looks like this weekend still for discharge. Well, probably not this weekend, since they planned for the 22nd, but close enough. So, here's a list of all the bad things that happened today:

1. Late start, due to lack of sleep and nurses who can't figure out my schedule correctly (she woke me up at 9 instead of 8. I had a therapy at 9:30, so I was super late for that).

2. Late for school, so I missed my fav. part of the day.

3. Extremely short lunch, that got interrupted about 3 times.

4. PFTs, which are never really "fun".

5. No show for PT (bittersweet I guess).


Now let's compare it to a list of good things that have happened today:

1. I woke up, alive and knowing I am getting better.

2. I reached my goal of eight minutes non-stop on the speed bag.

3. I reached my goal of a standing shower.

4. I got Spaghettios for lunch.

I got my doctor on board to start a new med (I'll tell about it at the end).

5. I got SOME schoolwork done, which is better than nothing.

6. And tonight, we are going to do nothing but rest, since both mom and I have a little catching up to do.

Well lookie there, my good list outweighs the bad list!! About the new med; it's not really a new med. I have taken it before, but I had to come off of it cuz it was weirding out my liver functions too much. The only problem with taking me off of it is that I have nothing to control the arthritis pain now. So what we'll do is try the lower dose and pray to God it is enough to bring my pain back under control. Wish us a lot of luck with that one. Now, since I've reached not only 1, but 2 goals today (not even mentioning that they were goals set for the end of the week, and I broke past them all), I thinhk ya'll would agree I deserve a treat, huh? Huh huh? Oh mommy dearest, I love you so...............I hope it works. I think it will. I have worked a hard day today, and so has she, and we both need a little something as a reward. I have noticed that even if I say it'll be a short entry, I always manage to come up with at least 20 paragraphs of no signifigance whatsoever. Oh well, that's what friends are for, right?? OOO, looking at the time, I really gotta go. Like I said, today has been my busiest yet!!
Love Kayla

Hello everyone! Another entry of complaints, but there are some good things too. Well, the overnight pass this weekend went fairly well, but when we got back to the hospital, things got a little rocky. It turns out they don't like to start mixing the IVIG until the patient is back, and they are certain that they will be able to give it on schedule (I guess the IVIG is very expensive, and only lasts a few hours after being prepared). So we got back around 8, it didn't get started until almost 11 (it takes that long to prepare it, then 3 hours of actual infusion), and so we didn't get to bed until almost 2 in the morning. Then today we got a late start, I was running on empty, and they have me on one of the busiest schedules I've had so far. That and I always manage to get the most annoying morning nurses, so they get to face the morning bear (I was worse this moprning, from lack of sleep and pain, and I just can't tolerate them normally!) I was late getting up, so I was late for OT, which ran over and I was therefore late for school (usually I have an hourm, this time I only had about 20 minutes of work time). This also ran over, making me late for pool, then we rushed back to my room for lunch, and to see my doc since that was the only times I had open where she could see me. Then PFTs at 1:00, then PT then OT then rehab psych and now I am using up my rehab rec. time for this, so I'll let you go soon and come back after. But I guess I got a little buit of a break (even if it was accidental) since they got mixed up at where I was having my PT (she thought we had it on the 6th floor, since we usually do, but today we had speed bag so everything was scheduled for 3rd floor. Ok, I'm gonna go but I'll be back, I don't want to miss all my rec. time!!! ttfn

Hi all, short entry today. just wanted to stop in before we start our big outing, if we ever do! I know, be shocked, but there have been some complications with meds and stuff. That and I can't seem to get a hold of my mother, which is also not very convenient. So here I am, sitting all alone, bor3ed out of my mind, while I watch the sun slowly leave and be replaced by more clouds, so that as soon as I get discharged it will start tobrain. just cuz that's how my life goes. But alsas! I just got a call back from my mother, and yes, there have been complications. They shorted me one dose of one of my meds, and they sent the shot in an auto injector, which is a big no no with us. But maybe there is still enough time for a little bit of sunshine and a walk through the park ( I highly doubt the park, but hey, we can do some other fun stuff). One more thing though. Tomorrow they want to do an IVIG when I get back to my room, which involves putting in an IV. Whenever we put in a line there is always the chance of it going bad or something, so if you need something to pray about, pray it goes smoothly. I'm sure it will, but it never hurts to be extra careful, and what are prayers gonna do but help even more? thanks for listening, and I'll post tomorrow in full detail how our saop opera day turned out. Love to all, and prayers to all, thanks to all, peace out to all......

Maybe there is some hope left in the world. Today was a better day, looking at it overall. This morning started out pretty crappy, since my back was so tense I couldn't move. I had to take my Morphine, Robaxin, and TWO Oxycodones and that didn't even phase it (therefore I went into a really bad spasm). This made me late getting up, so I ate breakfast late. Oh, postpone complaining about pain, so that I can tell you how pathetic this hospital is with their food. They expect me to run on half a biscuit and Rice Krispies. Oh, can't forget that 1/4 of a banana!! But anyway, after breakfast I took my med medley. Bathroom break, then getting dressed and brushing teeth and other grooming things. By this time I am so late that it takes up my whole 1/2 hour of OT (not that that makes me very sad). Then trying to hurry and get to the gym to salvage what was left of my OT time (about 10 minutes), I go into another spasm. Then it's time for PT. By this time my back is so tight all we can do is deep tissue massage, since I can't move hardly. Then I'm whisked off to school for an hour, only to find out I have a major project I have to work on over the weekend (get this, I have to build a 3-D model of the ancient Japanese castle of Himeji, along with an essay on it's history and unique features). After this it gets a little better though. they actually gave me a whole extra hour and a half free, so we were able to eat a leisurely lunch, just me and mom (which was awesome, it was clam chowder day today!). Then mom took me for a surprise; one of our friends from CRC (clinical research center, where I went when I was on the experimental drug) had brought in her puppy so that I could see her! That definitely surprised (and pleased) me. After we played with the puppy for about half an hour we went to the art room to see what we could scrounge up for supplies to build my model (half a success, you could say. What kind of hospital doesn't have extra pieces of cardboard lying around, especially an art department!) But we did manage to find some Popsicle sticks and modeling clay, so I'[ll try and make it work. Then it was PT and OT time again, 10 minutes on the arm bike, 10 on the recumbent. I also got a really nice new butt pad for my wheelchair (to help support my back better). Oh, and the best part is when they decided to give me an arm extension thingy, ya know, the really long stick with the claw on the end to help reach things that are really high or really low (they give them to a lot of old people, and to short people too I guess). Then I came back to my room and now I'm talking on here. You have just read through a pretty thourough description of my day. It was a bummer though, no pool today. I had to ride the stupid bike instead (but Amanda, my PT on Wed.-Fri., makes it pretty fun). Another bummer is that all next week I have to get up another half hour early to get ready for my 9:30 OT sessions! I thought I made it very clear that I am not a morning person, and it was their own fault if the got the grumpy side of me by sceduling anything before 10:00. But really, it was worth. This way I can go to Ot, then school from 10:00-11:00 and pool PT from 11:00-12:00, then lunch. Then probably OT PT again, and maybe rehab psych, or rehab rec. We will try to reschedule the outing from this week to next, since it was a bust. Not much else to complain about though, come to think of it. We are going to try a few different techniques in how I sleep to see if that helps my back any. They are also having Pain Team come down and talk to us about alternative treatments, like acupuncture. Frankly, I'm not 100% sure about it, but the more my back keeps spazzing out, the more open to it I feel. Hey, if it helps, I'm open to it! I've heard from a few different people that it does wonders, my arthritis pen pal says it works great for her, so I'm thinking maybe it will for me too. Anything to get me off of these stupid pain pills, or at least get me down on the narcs a little bit. Ok, since I don't want to end on a sour note, I'll share some exciting news: WE GOT AN OVERNIGHT PASS!!!! tomorrow after my morning therapies, we're outta here and ain't coming back till Sunday night! Sure it's only across the street, but heck, better than nothing really! Well, it's four right now, so I think I'll squeeze in a little brainstorming before dinner comes. It's gonna be tough getting this model done, without all the world's resources at my fingertips (you wouldn't realize how limited your options are in this place). Much love to all!!

Well, howdy everybody. Today was another pretty stressful day, what with all of the frustrating yayhoos out there to deal with. I really cannot stand my nurse in the mornings, she is a pain in the rear (especially when I don't get much sleep and am in pain from the minute I open my eyes). How would she like it if I came into the room and started talking about things that really didn't matter? I know that sounds a little harsh, but what do you think mattered more to me at the moment, how dry my toast was or how much I needed my freaking pain meds! But after I finally told her to forget about opening my vitamins and get me some Oxycodone NOW it got a little better. Then on top of that I had Robaxin and Morphine in my system (ya think that would bring down the pain at least a tad? Nah, cuz I just don't work that way!). Then off to my stupid morning therapies. Yeah, sure, the stretching helps my back, but through how much pain am I supposed to bear it before I get any benefit? That was during OT, but PT was a little better. We got into the pool today, and we're doing it tomorrow and Friday too. That definitely helps when it comes to lowering the impact, but my hip still hurt like a mother of pearl. Then don't even get me started on dietary. The rat buggers just can't seem to figure out that their food sucks and they need to fix it. I think I'd know after having to suffer through it for 6 months, how bout you? And I know they have a lot of kids to feed, but that really shouldn't affect the quality of the food. It's the stupid system, trying to find the cheapest way out. It's also partly b/c they have me on the reduced sodium/glucose diet, cuz their regular diet ain't half bad most of the time, but the modified ones are pathetic! I had my hip X-rayed today, so we're waiting for the films to see if there are any fractures there as well. I half hope there is, just so we can pinpoint the cause of the pain, therefore we could know how to better treat it instead of relying on all these meds, and not ever knowing what the underlying problem is. I also half hope there isn't anything wrong, and we can just blame it on a really bad flare, but I highly doubt the latter (which is a major bummer). I think tomorrow will be a better day though, since I have school, and that always seems to be the most uplifting part of my day (surprise surprise). That and lunch is right after (ha ha ha ha). I can NOT wait until we can get control into our own hands when we get out of here. I'm sure everyone will be happier, not just b/c it means we're further down the road to recovery, but it will be a lot easier to be in control of everything (like the diet for instance). only 10 more days until estimated discharge date, so keep your fingers crossed it stays that way. This weekend is looking pretty good, depending on whether or not we get that overnight pass. but even if that doesn't happen, it should still be good, cuz I have my four hour passes still. Well, thank you whoever for listening to me vent, I hope you don't think too poorly of me now. It's just my patience is running a wee bit thin (and so is Mom's). I love everyone and miss you all so much. I can't wait to come hoooooome (maybe in August they say, but only for a visit). I guess it all depends on how the wind blows. We just have to roll with the punches I guess. Which reminds me, I am getting better and better on the speed bag, and it works wonders on helping with anxiety and frustration!!

Hi everyone. Not such a good day today. My back keeps getting worse, and the only thing we can do about it is bump up the pain meds. I hate going up on those things, it feels like I'm cheating by using them. I mean, I'm already on Morphine, Robaxin, Oxycodone, and Tylenol for pain. Not even all those together cuts it anymore, so they are upping the Robaxin even more (I was on 1 pill every four hours, now they are adding an extra half pill to the morning and half pill in the evening.) Even though I don't like it, I'm open to it if it'll help. I really hope it does, cuz I won't be able to go many more PT OT sessions if it gets any worse. Remember how I was going on my outing today? Exnay that little idea. I was fine during PT, but I was starting to get a little sore, so we called my nurse for some more pain meds (Oxycodone), plus I was running out of O2 in my portable tank. That was around 1:45, and I had OT right after until 2:30. The crappy part is the friggin nurse never brought my pain med, so my pain was out of control by the time I got the meds in my system. And what usually happens when pain gets out of control? It is very hard to get back under control. So me, being stupid as I am, decided to grin and bear it and try my outing anyway (stupid stupid move). I was alright until we were trying to get into the van, then WHAMMO!!! Major spasm. That was the end of our Barnes and Noble escapade, unfortunately. Since a lot of my pain is also in my hip, they are going to take an X-ray to make sure there are no fractures there too (since they seem to be everywhere else). There is one good thing about today though. We got the all clear from all the different docs to go into the pool, so that starts tomorrow. Wish me luck on getting my back figured out, cuz it looks like I'll need a few extra prayers to figure out this dilemma. With much love, I will sign off here to eat my instant spuds. =...(