Today is a day of good news! We still haven't figured out my knee situation, but tomorrow they're taking an MRI of both knees and hips (at 9 in the morning! insanity, I tell you!) and maybe that'll show more than the X-rays did (which is zip). We tried to go to the zoo yesterday, but didn't get out of here until like three, and we only had four hours. Today we were supposed to go at like one, but they sprung us with more tests, so it's another day we're stuck close by. Tomorrow I tell you! We will go to the zoo tomorrow, since it sounds like dad is leaving Saturday to go back home. I think it's for sure, tickets bought and everything.

Another great thing about today is that we found out more about my dependency on the oxygen. I used to be on a steady three liters to keep my sats above alarm level (90), that was about two weeks ago. Now I am on steady 1 1/2 liters and can be off for twenty minutes (if not longer). Now we're going out on pass to celebrate, and I just realized I forgot a med *gasp* (hey, I can have my days) a shot. Gotta go, talk later.

Hi all. I come bearing good and bad news. The good news is I am going into intensive rehab next week. The bad news is that means I'm inpatient for at least three more weeks. Sometime next week I will move up to the rehab unit and start my therapy. The only thing we would be doing differently is it would be 3-4 hours a day, and it will all take place in the rehab gym instead of the regular ot/pt gym. This came as a pretty big blow since they were just talking about discharge and just doing outpatient therapy, but they think it's best to just go with three more weeks of the intensive stuff, and then to the Ron Don. That isn't all though; they say even after rehab we will still stay in Seattle for months. They do this all the time, say I can go, then whip around and change it. The docs really mean the best, but still................................Gotta go see if I can get out of this stupid hospital room for a little while, since once I start rehab my passes will be even more limited. M-A-J-O-R B-U-M-M-E-R!!!!!!!!!!!!!

ZZZZZZZ yesterday was a very lazy day! Dad and I slept in till about ten, got my meds, then went out on pass to the Ron Don. We got there early afternoon and slept till about six in the evening! Since we were all pretty hungry we got together some frozen Au Jus meat, french fries, then walked up the street to the market and got some rolls and fruit for a fairly easy meal. Then after that we layed back down......again and watched a movie. we got back to the hospital around eleven. They did tell us we could stay out, no rush, yada yada yada, but maybe we'll plan a little earlier tonight, since tomorrow is a pretty big day anyway.

This morning started out just a tad bit rough, and hasn't really gotten a whole heck of a lot better. First I spilled my imitation pancake syrup down the front of me, and all over one of my favorite blankets. This is while we're waiting for my last dose of IV meds, which "gasp" pharmacy didn't have any in house. Thank God bloodwork is still holding out well, and all things on that end are in the safe zone.

Why is it a big day, you may ask?? FIRST DAY OF REHAB!!!! First day with my whole body free of hoses, first day back at school, first day of p-t/o-t rehab, just a day of starting over, in sorts.

Today we are pretty much gonna take it easy, let the holiday weekend draw itself to a close. I'm thinking ribs, corn, salad, fruit, and maybe I can convince the parents for a little sweet treat......what's a little insulin gonna do to me, I'm already getting one shot, and it'll only be a unit or two.

One more thing, which is very exciting in itself (being's how I've been on a steady three liters the past few months) I am holding my own oxygen levels on one and a half, without any vigorous activity. That will change as rehab goes on, though. I guess I'd better go:

1. b/c mom and dad will be back from lunch soon, and that means we get ready and go and start dinner.

2. another gourmet diabetic snack has arrived, and I am starving!!!

3. I have other blogs to check, and the emails are piling up as we speak, so I bid thee farewell!!


Much much love from a very happy girl and her very happy family,

Us (mostly Kayla though, since mom and dad ditched me for their science project lunch!)

SO SORRY!!! I have been very bad about updation of my blog. I am completely whooped from my week, but it is the kind of tired that is good if you know what I mean. That's why tomorrow will be Sunday, the day of rest (literally for us!) That and my grandparents leave after being here for about two weeks, which is a bummer (b/c) that leads into the next thing I have to say, which is: I have two more days of anti-fungal IV meds, then I'm off everything IV.
After that I am free to go to the Ronald McDonald House, then after I complete rehab, I can come home!!! Keep up the prayers, and any other ways you can think of to help, b/c no matter what they say, I know my family is in a lot of need in a lot of ways. But, that kind of talk bums ya out, and we don't want that, do we?? All week we've gone out on passes, and we just need a day of rest, just like God meant. so I leave you now to rest up for a day of resting and lazing and basically the first day we've hung out at the Ron Don as a somewhat normal family. Gosh, does it feel good. See ya tomorrow!!

So sorry I haven't been on as frequently as I may have promised, other things have gotten in the way. All my meds are still the same, the c-diff is going away, and so is the yeast infection we hope. The heart dude came by today, and the ticker's still doing fine. My oxygen levels are being all fussy and wierd though, so they keep giving me extra Lasix (diuretic) and it really doesn't help you sleep when you're up all night peeing. That and my back hurts and my butt hurts and my jaw hurts and my, well, you get the picture. But I guess life can't be all that bad since my penpal, who also has JRA is in the room two doors down with hip issues. They don't know whether or not it is another underlying disease, or a particularly bad flare, or what. I am also happy to say I got in two, yes, count em, two, walks last night.

I haven't had very good sleep the last few nights though, especially since dad dropped me the other day. Ok, ok, he didn't drop my, but I did hit the floor with my head and my knee, which kinda hurt. I'd better go soon though since I just got my glucose checked and if I don't eat soon then they can't count the latest poke as my pre and after, so see ya!

Hello everybody!! Yesterday was phenomenal. First we went to the Japanese Tea Gardens, which was beautiful with all the flowers and trees in bloom. The sun was out for the most part of our tour, and so were the turtles and coy in the pond. We even saw a turtle sunbathing on a rock, and it kept sticking it's foot in the water, teasing the coy that kept swimming past. Then when we were getting from the Gardens to The Melting Pot we got a little off course, but no big deal since it took us on a nice trip around Lake Washington, and we were only a few minutes late for dinner. Speaking of, that was fantastic. First we got seated and everything, then chose our drinks and all that jazz. Then waiting on drinks we chose our food:

Cheese course: Cheddar garlic and herb and Wisconsin something or other Bleu cheese with different kinds of breads and apples and such.

Salad course: Californian salad, Chef salad, and a few others I can't recall.

Entree: We got the Flavor Fusion, and it had a broth with a citrus base and a basic herb broth, with lobster, serloin, chicken, shrimp, tuna, and assorted veggies.

Dessert: The best course, naturally. There were many tough choices, but I finally settled on Chocolate Smore's (melted milk chocolate with marshmallow paste and graham cracker crumbs) and Flaming Turtle (melted dark chocolate with pecans and caramel sauce) and to dip we had strawberries, pineapple, bananas, marshmallows rolled in graham cracker crumbs and oreo crumbs, pound cake and brownie cubes, and a big slice of cheesecake.

I don't think I'm forgetting anything, except the kitchen sink (ha ha ha). We found out last night that fondueing is not a task of speed, and dining out in a fondue restaurant is not a cheap experience. But money is meant to be spent and life is meant to be lived. Gotta go for meds, but I'll post more later!

YAY!!! Good news, good news!!!

1.My ferritin and d-dimer bloodwork is normal. And not just my normal, but normal as in normal person normal. They haven't been normal person normal since December of 2004, and it hasn't been my normal since October 2006. (ferritin and d-dimer are two markers for liver functions. We have to watch these because my liver is affected by the JRA)

2. I GOT A DAY PASS!!!! Tomorrow after all of my medicines and stuff I get to go out into the real world for four whole hours!!!

3. I have started exercises to start building up my strength and stamina.

Ok, like I said, bloodwork is good. The cultures came back positive for the yeast, but the docs don't know where the source is. That means tomorrow morning sometime I have to get a CT scan to pinpoint the home of the bug so that we can better kill it. Also, yesterday I got another blood transfusion, and today I am getting more platelets, so I should be good to go for tomorrow! lol
I'm so excited about tomorrow I can hardly sit still!! I'd love to stay and chat, but I've got to go pick out what I'm gonna wear, since I don't think a hospital gown with no back is appropriate for this occasion!!

P.S. For my four hour pass, we are going to go have dinner at The Melting Pot, a fairly upscale fondue restaurant.

Blaaaaaaaahhhhhh. don't you hate it when you feel like utter crap? I now have a yeast infection, so they are taking samples, and X rays. So that means more drugs, blood draws everyday, and tests. that and I hurt my back again, so that's a whole other subject. I guess looking at the bright side I can be off my IV at 1 pm until 6 pm. It's never long enough though................maybe I should try to eat lunch, so goodbye.

I hate good news/bad news days. The good news is that we got off of one antibiotic, so that leaves two. Bad news is I still have the C DIFF, so I'm still on that antibiotic, and the other wide range one too. My marrow is back to producing too many cells though. Personally, I think it's because they gave me too much white cell booster. It's a four day treatment, but you can stop on whichever day you need to. The docs thought it would be ok to finish all days, but look where that got us. So now we're back to the day by day planning, and messing with meds, and all that crap. I stay on the Anakinra no matter what, but they don't know what to do with the Enbryl, since it can knock your immune system down (which is kind of what I need right now with my numbers as they are) or even going back onto the Thalidomide, which I am not thrilled about. But today is a better day, most things considered. And whoopie, I just found out they are going to do the fourth day of the booster, which I think is a mistake. I don't know what's gonna happen, and neither do they.......yet. We'll try to update as soon as we know more.

P.S. I figured why not just start new, since my fingernails are growing back, along with my skin, so I decided to buzz cut the rest of my hair. We'll take some pics later on and post them. Ta ta for now.

I'm just gonna be a little more honest, since it'll make me feel better mentally. My numbers may be going good, and I don't feel like complete crap, but I am getting close. I try to do as much as I can myself, but these meds make you feel like crap, anyone who has done this knows. It seems like every little thing is not worth doing because I'm always tired, or hurting, or getting meds, or something is going on. In fact I have to go try and take a rinse off shower of the week, since I never can during the week days, even though it's mothers day and I hate to ask for anyones help especially from family but that's what unconditional love is right? Gotta go, but I'll be back later. Thank you evryone for evrything, I hate to be the cuase of any of this, but hat's the way life goes, unfortunately. feel the love. please.

Hi all,
Happy Moms Day All you Moms.
I've been feeling a tad under the weather the past few days. The blood and gut bugs came a knockin and silly me I unwittingly let um in. All 1.1 of my white blood cell count couldn't fight them off and I got SICK. The docs jumped right on the infection and gave me a shot of new blood,
I'm doin pretty good today. The drug cocktail I'm on seems to be working out for my underlying disease. I've got a bunch of wittle baby white cells growin. I just hope I don't get too many too fast, that will flare up things. I just need enough to keep the bugs at bay and the MAS under control. The most important thing right now is that my immune system is recovering itself, with a little help from drugs and stuff. we just need to keep the hiccups away so we can clear up all the other issues. My spirits are up, so it's gonna be a good Mother's Day we all hope. Just keep up the prayers and anything elseyou can think of to help, because every little bit helps, you can't imagine. I'd better go and spend some time with all the mothers with me, so I can tell them how special they are, you know how it is! we'll definitely start back into the routine of me typing about being bored, since I liked that a little better than these bugs. HAPPY MOTHER'S DAY!!!

It feels so weird to have nothing to say in my post. Not bad, just weird. Everything is about the same as yesterday when it comes to bloodwork and all the complicated side of things. They decided since we've had to start drawing blood from my feet to give me a day off, so now it's a poke in the foot every other day. I recommend not getting ill, it's way too much trouble. My counts are still wiped out, but we got the green light to go outside today! and such a nice day it is, i think last i've heard it was supposed to get up to 70, which is the warmest weather i've felt in a long time, and it feels really good. So i will leave you here to go enjoy it even more. And even though i always mean to, and i try to, i might not be able to post tonight. we've got more visitors coming tonight, so like always, if not tonight tomorrow.

P.S. aren't we all so proud of how well i'm doing keeping my blog up-to-date!? tee hee hee

Hola, amigos!!! I think I'm finally on the upswing of things. All my numbers are good except for my white blood cells are zip. All staff purell and mask before coming into my room, and everyone else has to purell when they come into my room, and when they leave too. Nobody sick, no flowers, live or fake, no prepared foods, no raw foods, and all that jazz. Other than that I feel pretty good. All we need to do is bring up my white cells and keep everything else where it is and we can start to think about at least getting me out of here and into the Ronald McDonald House, and then homeward bound. Well, I'm gettin a little spacey, and I don't really have much more to say, except Night At The Museum is a really good movie, I recommend it.

Look at me go! three days running! Well, I decided life wasn't exciting enough, so I had a 4 hour nose bleed this morning. It started at 6 AM and bled and bled and bled until about ten thirty. We had to get the Ear Nose and Throat Specialist to come and suction my nose. He had to clamp open my nostril and I had a clot big enough to shock everyone in the room, including the specialist! But now I can breath through my nose again, and hopefully we have stopped the frequent nosebleeds, at least for a few days. I got another dose of platelets this morning, since the MAS is gobbling them up like crazy. We had quite the interesting night last night for Cinco De Mayo. We figured since we can't go out to party, we'd bring the party in, and we actually didn't do too shabby of a job. We had authentic mexican food, a pinata, and the best part: sour candy. (That last bit has nothing to do with Cinco De Mayo, but oh well). Uh oh, my lunch just arrived, and so I say goodbye to you, and hello to a bowl of Beenie Weenies with my name all over it. May get on later if anything else major happens, if not I'll check in again tomorrow. Ttfn!!

Cinco De Mayo!!

Wow, two posts in a row! I'm on a roll here, aren't I? Well today is even better than yesterday. I am wearing real clothes for the first time in at least three weeks, so that's quite exciting. I also got the docs to let me off my tethers for a whole 8 hours, so I can cruise pretty much anywhere I want. But I also have to remember my white blood count is low, so I can't go where there will be a lot of people, and I have to wear a mask. But hey, that's the small price I'm willing to pay to be able to be free for a few hours. We were going to have a picnic lunch today, but the weather had other plans, so we're gonna have a fiesta tonight instead. We're gonna try and sneak some margarita mix in here so my dad can make some virgin margaritas, beans, chips and salsa, stuff like that. In fact, I should go make some mexicany decorations for my "prison cell" as it's coming to be known. Healthwise I'm still pretty much the same, except my white counts are lower than we'd like, but that may change tonight (we hope). I will try to update again tonight, if I'm not too wiped out after our little party. If not we will tomorrow, and I'm sure dad will have a whole shloo of pics from tonight that we will post. There's not much else to do around here when you have low anything on the immune suppressed lifestyle I am forced to live. I have a few more days of my antibiotics and I should be over this E. coli. We just need to keep any more infections from getting in, and then we can mess with treatments and stuff, so that maybe I can try to come home some time this summer. It's a big maybe/if/when, but hey, I can dream! Well, adios, my friends, and Happy Cinco De Mayo!!!

Howdy everybody!! Kayla here, finally feeling good enough to drag out the computer and post on my own again. Yesterday was a pretty good day, I got a dose of platelets, and I'm getting a dose of blood as we speak. Today was the big conference with all the different departments involved with my case. We think we've finally found the right mix of medications to keep everything under control, that isn't steroids and won't completely wreck my immune system. I would be on Anakinra shot 2 a day every day, Enbrel 2 a day 2 times a week, and Thalidomide 1 a day every day. That and keeping everything as clean as possible, eat all the right stuff, drink the right amount of fluids, blah blah blah. Being sick is harder than you'd think. I promise I will post again later, but I have stuff to do in the meantime, so I will try more later.

Hi to all.
Last night was very long. I had a few nose bleeds that wouldn't stop and pressure sore problems that are a pain in the back side. The wound team is on that though with some new and improved stuff. The Rheumatologists ordered a platelet transfusion. It went very well, no adverse reactions! I (and everybody else)like it when it's just another boring transfusion.I have been having blurred vision for a while, this afternoon, I went to the Opthamologist. Great news, my eyes show no sign of Iritis from the SJRA!! Just a side effect from the steroids and the other ingredients in the daily cocktail. They will go away. My aunt Michelle and grandmother Gloria came up from Idaho for a few days
Tonight I will start on Enbrel. Two shots a week. Hopefully it will help with the MAS. Keep praying! Thanks to everyone who has commented.
Thanks to Pastor Andy for visiting my parents & I! His visit was a huge blessing!!
Gotta Run (Sleeping to do)!!
Love
Kayla

Tuesday Update

Hi all, Things are looking back around to the right side of the fence today. Yesterday I got a dose of platelets that didn't seem to want to play fair. I've been quite like a vampire and using up a lot of blood. I slept while everyone else kinda got scared. Docs thought the MAS went out of control and scratched some of their hair off. I filled my lungs full of water and didn't do well with the breathing thing either.
Ha!! fooled them. It was only a mild case of septic shock. Goody more antibiotics. Pastor Andy came down for 2 days and really helped mom, dad and me out. It was great relief for all of us. That's him in the picture with me in my new Seattle Mariners' hat. The Mariners were visiting the hospital and I got some great loot; a hat, a ball, a picture, a Mariners Moose doll, and a duffle bag. The Rheumatologists have switched this week, Dr Emery is my attending so we have another great doctor working very close to me. Gotta go and kill some bloodbugs.
Ta Ta
Love Kayla