A wonderful young lady with Systemic Juvenile Rheumatiod Arthritis and Macrophage Activation Syndrome. I seem to defy the laws of modern medical science. We are home, and the wacky regimen of meds is working........for now. I know that God intended this life, and has a plan for me, be it dying tomorrow or living to be 100. I like to think that even though my life is tough, everything I've been through (and will go through) will help someone to not have to go through their life quite as hard.
Thursday, February 28, 2008
Saturday, February 16, 2008
Oh......my.........gosh. Okay, how long is the line for people waiting to slap my hand?? I am sooooo sorry, but we just, well, we, um, oh, darn, why not just say it: I have no excuse. I have been lazy, and that is why you have all been left anxiously waiting for over a week. And that is the reason there should be a line 10 miles long of people, all waiting to slap my hand and scold me for leaving you all uninformed for so long. Well, not a whole heck of a lot I can do about it now, except beg for your forgiveness, and move right along. Okay, so first off, mom got in fine! Her flight was supposed to be getting in early, but as I'm sure any of you that have flied Alaska Airlines, they were delayed and ended up getting into Seattle on schedule. Darn good for Alaska Airlines, I must say, since they seem to consider getting to their destination on the same day arriving on time! Okay, enough raving about A.A., and on to the next topic. It is now a week and a day of being parolled, and so far so good. I have labs twice a week, and depending on how those look is how we time different treatments. For instance, this past Tuesday I got a draw that didn't look so great, so bada bing bada boom, Rimicaide on Thursday (which was really screwed up, they couldn't get my port accessed, then once it was, they couldn't infuse the med, since they couldn't get any blood return to let them know they were for sure in a vein. They finally got access almost 2 hours after my infusion was supposed to have started!). Now the next one is on Monday, so hope hard and pray harder that my results will look better than the previous one! So, I think I've covered all topics, at least that I can think of this late (yes, 10 p.m. is late for me, when I got up at 7:30 a.m. That is the earliest I have gotten up since getting out! Yes, sad but true!) Alrighty then, I guess this is goodbye, and I won't make any promises on when the next update will be, since I may be away from internet access for a few days. I will try to let y'all know what the results were, and if not, then later on this week for sure! Toodles!
Friday, February 8, 2008
Oh...........my..............gosh. I canNOT beLIEVE I haven't updated in a week!!! Well, I could have had a little help, hint hint (Dad has been breathing that down my neck for the past three days, "you need to update your blog; you'd better update your blog!)!!! Anywho, I guess it doesn't really matter how or when or who gets on here, but it kind of does matter what we're on here for. This post is actually a really, really, really, important one. I.................AM................OUT!!!!!!!!
Yes, I am really out of the hospital! A free woman, that's what I am!!! We made our goal, out before 100 days!! How AWESOME is that?!??! Okay, now that I told everyone, I'm gonna go and enjoy my newfound freedom (and dad is now breathing down my neck, "I'm hungry, let's go eat" and I am kind of hungry!!) So, I will probably be on next tomorrow night, to let y'all know mom made it back saftely. See ya lata!!! Lotesa Love, Kayla
Yes, I am really out of the hospital! A free woman, that's what I am!!! We made our goal, out before 100 days!! How AWESOME is that?!??! Okay, now that I told everyone, I'm gonna go and enjoy my newfound freedom (and dad is now breathing down my neck, "I'm hungry, let's go eat" and I am kind of hungry!!) So, I will probably be on next tomorrow night, to let y'all know mom made it back saftely. See ya lata!!! Lotesa Love, Kayla
Friday, February 1, 2008
Out of Surgery
Hi Everyone.
Kayla made it out of surgery fine. They were abble to do everything laproscopicly. They removed a small section of her bowel. She will not be able to eat or drink for another few days. We hope & pray this fixes the problem. She will be recovering for 6 - 8 weeks before we can talk with the Fred Hutch. We are all needing a break before we start that long process.
We hope to make a trip to Nevada & come home for awhile. The rest of Kayla's disease process have been keeping in check. Hopfully we can start reducing a lot of her meds, like the steroids!!!
Well Thank you for all the prayers. We ask for continued prayers.
Take Care & God Bless.
Kayla made it out of surgery fine. They were abble to do everything laproscopicly. They removed a small section of her bowel. She will not be able to eat or drink for another few days. We hope & pray this fixes the problem. She will be recovering for 6 - 8 weeks before we can talk with the Fred Hutch. We are all needing a break before we start that long process.
We hope to make a trip to Nevada & come home for awhile. The rest of Kayla's disease process have been keeping in check. Hopfully we can start reducing a lot of her meds, like the steroids!!!
Well Thank you for all the prayers. We ask for continued prayers.
Take Care & God Bless.
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