Sunday Catch-up

It's been a pitifully long time since I have written any kind of a decent letter, and this one probably won't be any better.
I'm just going to do bullet points since I'm so tired.

• No news yet from the research study. Hopefully early this week, maybe tomorrow.Joseph lost one of his two top front teeth. He's lost 3 lower teeth, but this is his first upper tooth. He looks really cute. It happened last week in church, he had just gone into his primary classroom and his teacher gave each kid a cookie. The cookie was a little hard (one of those sandwich type cookies) as he bit into it, and he said when he was chewing he felt something kind of like a rock, and then he felt to see if his tooth was out, and it was! But then he accidentally swallowed it. LOL!! Anyway, it was just the tiniest bit traumatic for him, so he came into Young Women with me and I wiped his mouth (there's always a little blood when a tooth comes out), and he sat next to me for the rest of the time. The tooth fairy did manage to find him and give him a dollar anyway, although Joseph very vocally does NOT believe in the tooth fairy!
• The boys redeemed their first 3 weeks worth of chore stars (5 cents per star), and bought Webkinz animals. I hadn't heard of these at all until like 2 weeks ago when another little kid brought hers to Tae Kwon Do and a couple of the moms started talking about them. And then the boys spent the night at Adam's house when I went to Houston, and he has several, and then Webkinz were all they could talk about for a few days. So this is the deal with Webkinz. They are these stuffed animals, there are lots of different kinds. They're pretty average stuffed animals, just a step above beanie babies. But each one comes with a tag and when you open it up, there is a secret code for you to be able to sign up and log into "Webkinz World." Once in Webkinz World, you find yourself in this room with your virtual pet. You start out with a certain amount of money, and you need to keep your pet fed and exercised and played with. So you buy food, you can buy furniture for his room, when you get more money you can actually buy more rooms, even a whole house, and a yard, etc. You can buy clothes, and pay for your pet to take classes. There is a virtual store where you buy things, a "Webkinz Academy" where you take classes (math classes have simple math games, language classes simple word games, etc.). There is a club house where you can take your pet to run on a treadmill or jump on a trampoline, or go into a game room and play games with other virtual pets who are also logged in at the same time. You can get the user ID's of your friends, and "invite" their Webkinz over to play (you both have to be online at the same time, of course). There is an employment office where you can get a "job" and earn more money. The jobs are all various types of games (trying to aim and throw newspapers to houses, for example), and there's also an arcade and lots of other places to play games or take quizzes or whatever to earn money. Anyway, it is VERY involved. It's pretty fun for the kids, but unfortunately, mine are not *quite* old enough or adept enough with the mouse to figure it all out on their own, so I've spent quite a few hours this week on Webkinz World with my boys. Sigh... I guess it's ok quality time with mom, but I'd MUCH rather be doing something *real* with them, rather than playing in some virtual world with them. I expect after a few weeks it will lose its novelty.
• A week and a half ago we had our YW New Beginnings night. The theme was "A pageant of values," and it was kind of like a beauty pageant, with each girl representing a value, wearing a formal dress of that color, and being "interviewed" with questions about that value. It was really, really nice. It sounds a little cheesy with just a brief description, but trust me, it was very nice and very spiritual. So I was responsible for coming up with a purple and orange dress. I remembered Rosalynde's old royal purple prom dress from way back when, and thought that would work. But when mama dug it out of the closet, over time it had changed from purple to red! Isn't that odd? So she sent Rachel's Rose Court dress (lavendar, close enough to purple, right?), and another old prom dress that wasn't orange, more of a peach, but close enough. Well, I swear that sizes have changed over the past 15-20 years, because that size 6 dress was the SMALLEST size 6 ever. I can squeeze into a size 6 if I have to, but no WAY was that zipper going to close over my rib cage, and it didn't come any closer on the girl who was supposed to wear it either. I felt awful, because 15 year olds are so body-sensitive anyway, I felt terrible for bringing over a dress that she then had to tell me was too small. So I ended up finding this bright orange satin-type material, and desperately sewing an orange formal dress for her to wear on Wednesday night. I finished Wed. afternoon, and it didn't fit the girl exactly (I was mostly trying to fit it on myself, something that is VERY difficult to do by yourself!); it was a bit too big, but better too big than too small. So anyway, if anyone ever has a need for a modest bright orange formal dress, let me know! The girl who wore Rachel's dress was so thrilled to be wearing a Rose Court dress (she's originally from OC, so she knew all about the Rose Parade). I took a bunch of pictures (naturally, it was a Pageant after all!) and have spent a few hours editing the pictures and putting them all up on our Young Women blog that I keep.
• Um, let's see. I got a cold this week. Ugh. I got allergies this year, too, from all the cedar trees that pollinate in January around here, so a cold on top of that has been a little miserable. Mosey got it too, but he was really only feeling bad for one day. I'm still dragging but hoping tomorrow is better.
• I've been so, so, so tired (MS fatigue tired), and my legs are getting bad once again. We went to Barnes and Noble on Friday night to buy some birthday presents and to have hot chocolate at the cafe. But by the end of the day, I've really had it. Even though I hadn't really done much during that day. I had gotten up and dressed, got the kids fed breakfast and off to school, dropped off Mosey for preschool, then came back and sat at my desk and paid bills and filed papers before going to get Mosey from school again (and when I drop him off and pick him up, I mean that very literally-- the school sends someone out to my car to get him, and then brings him to my car when I come pick him up). Then I sat and did Webkinz with him until Brigham and Joseph came home, and then I pretty much just sat around all afternoon doing piano lessons with the boys, and reading, etc. But anyway, all that walking (sarcasm) really wore me out and Ben had to heavily support me just to walk back to the kids' section, and then to the cafe and then out again. It's pretty frustrating. But so far no trouble breathing, and my trunk strength is still ok. I know I should call in for another round of steroids, but I really don't want to. I vascillate from the mornings thinking I'm ok, this is tolerable, to the nights thinking this is NOT ok, I can't stand it! It just seems so futile, since I know the steroids will make me feel miserable for 2 weeks, and I'll only feel good for about 4 weeks before everything comes back. Is it worth it? Obviously not quite yet since I'm not yet thoroughly motivated to call my doctor. I think I'll wait until I hear back for sure from Houston, and then talk to the nurse there. I know I'll be going in for a ton of baseline MRI's, and maybe they'll have an opinion on whether they'd want me to wait until after the MRI's before doing another round of solumedrol, of if they don't care, or whatever. It's just really annoying. Last night my bathroom floor was really bugging me. I wanted to take a bath, but the floor was dirty and it just seemed yucky. The floor just gets dirty so fast (white tile), and it grosses me out to walk on dirty bathroom floors, especially with wet feet after a bath, so I REALLY wanted to sweep it. Ok, so it is not a big bathroom (anyone who's been to my house can vouch for that), and sweeping it is maybe a 1 minute task at the *most.* So I dragged myself over to the laundry room to get the broom, dragged myself back to the bathroom and attempted to sweep. I did get it swept, but I ended up sitting on the floor, scooting myself along, mostly sweeping with the whisk broom and dustpan because after that LONG trek to the laundry room and back, my legs would no longer cooperate. It is so annoying to have even the very simplest of tasks just be so overwhelmingly difficult!!
• Ok, whining over. The boys have been pretty good. They've said some funny things recently. Mosey has this uncanny ability to drive his big brothers crazy at times (and vice versa, I must say), and one afternoon a few days ago Brigham came in from outside really frustrated with Mosey. I asked him what was wrong and he said with this BIG dramatic sigh and a VERY exasperated voice, "Mosey just messed up the WHOLE ENTIRE UNIVERSE!!" Oh my goodness! I know Mosey can cause trouble, but wow, that's quite a LOT of trouble for one four year old! And then this afternoon we came home from church and I told the boys they all had to pick up toys while I made dinner. Mosey quickly informed me that there were way too many toys for him to pick up, so I told him maybe from now on he needs to think about that before getting out quite so many toys! He thought about that for a second and then said, "I know, but I just keep forgetting to pick up all my toys." Oh, boy, don't I know it!
• I observed something Friday night and yesterday that I've been waiting for ever since the twins were born. One of my boys so engrossed in a book, he didn't even hear me when I spoke to him (several times). Joseph is such a good reader now, and he loves it. He's been reading the "Magic Treehouse" series at school (there are about 27 of these so far, they are short chapter books, about 75 pages long, about this sister and brother who go back in time to different points in history and have adventures). So he got one (#7) at Barnes and Noble Friday night, read nearly half of it while we were there, and then finished the rest of it yesterday after we got home from a birthday party. I'm so excited for him! I remember the first time being bitten by the book bug (with "The Littles" series), and have been smitten ever since! Brigham isn't *quite* there yet, but his teacher just did reading evaluations last week, and emailed me and told me that not only is Brigham caught up, but he is now reading *above level!* I am very proud of him. Reading isn't super-easy for him and he gets quickly frustrated, but he's been working hard and it's paying off.
• I've been reading the boys"Where the Red Fern Grows," and we just read last night the chapter when Rubin Pritchfield gets killed when he falls on Billy's axe while charging to try and kill Old Dan and Little Ann. I had forgotten that section, but when I got to it last night, it all flooded back. That part of the book really disturbed me as a little girl. But I read it anyway, and we had a small discussion about how Rubin wasn't a nice boy, and had made a series of bad choices, but he still didn't deserve to die and this was why Billy was so very sad even though Rubin had been so terrible to him. Then today during Sacrament Meeting, Joseph whispered to me asking if I thought "Where the Red Fern Grows" is a true story or fiction. I told him it was fiction, but probably based on some real things that happened to the author or people he knew while growing up. I hope this story isn't too intense for my little guys. I don't know how we'll handle the end. Joseph named his Webkinz dog "Little Ann," and I'm afraid he's really going to be devastated. Should I maybe accidentally "lose" the book? And somehow never manage to get to the library to check out another copy? Or just read it and be glad that my kids can be introduced to grief and tragedy through a fictional story and not actually through real life experiences?
• The boys are kind of fixated on the macabre and dark aspects of life. A couple of days ago on the way home from somewhere, they were all sitting in the back of the car describing what they thought Hell would be like (monsters and scary bugs and fire and stuff). And yes, we have talked about how Hell isn't actually a place with fire and brimstone, but they're imaginations go there anyway. And they like to play "Voldemort" a lot, coming up with these story lines with a stuffed animal or something playing the part of Voldemort, and various other stuffed animals (or whatever) fighting him. Maybe we need to stick with some lighter, happier literature for a while.
• Ok that's it. It's 5:30 PM and I got just about 9 hours of sleep last night, but I'm still soooooo tired I can't keep my eyes open. Must go lay down for a while before it's bedtime for boys.

My three boys

Funny joke

I got this in my email box yesterday, one of those forwarding things that everyone hates. But this one made me laugh. It's a joke that probably many of you will find to be in terribly bad taste. But funny nonetheless.

Bob was in trouble. He forgot his wedding anniversary. His wife was really mad. She told him, "Tomorrow morning, I expect to find a gift in the driveway that goes from 0 to 200 in 6 seconds AND IT BETTER BE THERE!!"
The next morning he got up early and left for work. When his wife woke up, she looked out the window and, sure enough, there was a box gift-wrapped in the middle of the driveway.
Confused, the wife put on her robe, ran out to the driveway, and brought the box back in the house.
She opened it and found a brand new bathroom scale.
Bob has been missing since Friday.

Good news!

We JUST walked in the door and I know some of you are waiting to find out how things went, so here's a quick update.
In a nutshell, everything went great!! The doctor said I was "just the kind of candidate we are looking for." He went over my medical history in detail with me, I filled in some of the gaps. We discussed some of the other treatment options, discussed the bone marrow transplant itself, and then we did a physical exam.
First was the walking test, this was what I was most nervous about, but it went very well. He had me walk up and down a long hallway in the hospital. I could go as slow as I wanted I just couldn't stop, touch the wall, or obviously use my cane. I was able to go 320 meters!! So that puts me officially at 4.5, according to the EDSS.
After that he did the normal gamut of reflex testing, sensation testing, eye exam, coordination testing, etc. I was pretty nervous going in because, although we gave ourselves more than 4 hours to get there (mapquest said 3 hours), we were a little late. It was rainy all the way out, and then of course we hit Houston rush hour going into downtown. And THEN, the address on the Baylor website for the MS clinic was incorrect, so we were about 10 minutes late when we finally parked. Ben rushed ahead to make sure the doorway we were heading to was the right one, and I was trying to hurry, and my foot caught on the ground (brick paved sidewalk), and I started going down. This is always how I trip. My foot will catch on the ground and I just do not have the reflexes or muscle strength to be able to stop myself. By the grace of God, there was a woman walking past me just at that moment and she saw me about to fall and quickly told me to hold on to her, so I grabbed onto her shoulder and was able to stop myself from falling. Of course this really shook me up. The last thing I needed was to walk into the clinic with a ripped skirt and bloody knees because I fell coming in!! Also, I got really worried about my walking test. I had forgotten to take my Baclofen this morning (that's the medication I take for spasticity), so I was extra spastic and stiff. Of all mornings to forget! The reason was just that I wasn't doing my normal routine and I am, if nothing else, a creature of habit. But anyway, I was saying lots of prayers and I knew everyone else was praying for me, and sure enough everything ended up fine.
I told Dr. Hutton I hadn't taken my medication, and maybe in the end it is better for him to see me as I "really" am, rather than how I am with medications masking some of my underlying symptoms. In any case, the resident working with him got "perfect examples" of several classic MS reflex symptoms.
So anyway, he is going to recommend me to the board that makes the final decision, but he did say that they base their decision on his summary of my case, and so it almost certainly means I will be admitted into the study. He says it takes about a week, so I should hear by the end of next week or the beginning of the next. At that point, I'll be going back and forth to Houston a lot for preliminary testing of all sorts. I'll find out more about the timeline of all of that once I get the final green light.
So, that's the good news! Now my legs can do whatever they want to do. Although I also have permission to do additional steroid treatment as needed.
Thank you for all of your prayers and support. I needed it this morning. It wasn't a very auspicious beginning to the appointment, but it turned out really well.
The boys did well while we were gone. They spent the night at the twins' friend Adam's house (he's also the bishop's son), and then Mosey went home from preschool with a friend in his class.
So we are going to have a little celebration tonight with some friends, and then go to bed early! We are tired!

Off to Houston

Sorry I haven't been updating very much. Maybe a relief to some of you. It's been a busy week. I was scheduled to go to Seattle yesterday for my screening, but found out last Friday that Baylor is now recruiting patients, so I'm going to Houston in the morning instead. I'll be the first patient going through the screening process there so I'm hoping for the best. My appointment is at 9:30 CST, so any prayers that can be spared would be appreciated.
My legs have been giving me some more trouble. I think I'm still ok and that I'll slip in under the 5.5 disability score, but I wish I was a little more confident going in there. I think when I get up in the morning I'm at a 5.5, but by the end of the day I'm more like 6.5. A couple weeks ago I was at a 4.5 so I'm definitely seeing some deterioration, as I expected to as the steroids leave my system. But it is in the Lord's hands, and whatever will be, will be. But I certainly wouldn't mind prayers.

Things have otherwise been going fine. The boys are good. Mosey is enjoying being four. Last weekend we went to the San Antonio zoo for his birthday celebration. It is a very nice zoo, although it is a little hilly, making it a bit of a workout for Ben pushing me in the wheelchair. Still, the Miami Metro Zoo has my heart as being the best zoo. With the Denver Zoo being a close second. We did see some interesting things, including a baby wallaby climing into its mother's pouch! And the lions were having something of a roaring fest as we were going by, so that was pretty cool to see also. They have a nice little children's area with these tunnels that actually go out into the prairie dog exhibit so the kids can stick their heads up in this plastic dome thing and see the world from a Prairie dog's point of view. There is also a little aquatic area with a place for the kids to "fish" for plastic fish using magnetic fishing poles. This and the bat cave (probably the best bat exhibit I've seen) were the hits for the kids.

We ate dinner at Carino's and *almost* finished listening to HP 7 on the way home. We finally finished on Sunday afternon. Now what?! I really liked the last book, although J.K. sure is brutal about who she kills off, isn't she? I want to find another series for the kids to listen to that will be a good follow-up to Harry Potter. Any suggestions? I loved "The Dark is Rising" series, and I think the boys would like it, too, but maybe it's too advanced for them? Probably not, since they enjoyed Harry Potter so much, but part of me doesn't want to feed them all the "good stuff" too soon, know what I mean? Anyway, I'm open to suggestions. I love series, but stand alone books are good too. I started reading "Where the Red Fern Grows" to them, but I'm a little ambivalent about that, too. That was the first book I ever read that made me cry, and was certainly one of the very most memorable books to me as an elementary school student. I want them to be able to have those personal experiences with books, and that is why I'm a little hesitant to introduce some books to them too early, even though I know their comprehension is certainly at a high enough level to understand what is going on. I would just love to find books, real novels, with interesting characters and story lines, that are a little more appropriate to 6 year olds. Where the Red Fern Grows is about a 13-14 year old boy, and I think my boys are still too young to really identify with a character that much older. Same is true for the Harry Potter books, honestly. But there aren't any novels with 6 year olds as characters, are there? At least, not really geared toward boys. There's always the Ramona books and I think there are a bunch of "Junie Bee" type books (not sure if that's the name), but those are definitely geared towards little girls. Plus, they're so short. They're good for me to read to them, but not what I'm looking for in an audio book which I want to last a good long time. I just downloaded Diana Wynne Jones "A charmed life: the worlds of Crestamanci" (or something like that), and we started it today. We'll see how they like it.

Brigham and Joseph got sparring gear for TKD (helmets, gloves, feet protector thingies, etc.) and today they got to use them for the first time. I was pretty impressed with them! There are some kids that "spar" mostly by trying to keep away from their partner, but Brigham and Joseph were both right there in it, not afraid to give or receive punches and kicks. I guess that's one of the benefits of growing up wrestling and fighting with someone exactly your same size. Brigham especially was doing very well, using his kicks and blocks and stuff really well.

Mosey has developed an attitude. He has started just saying "no." Or flat out refusing to stop what I tell him to stop, or do what I tell him to do. What is going on?? He has been my easiest child by far, and now he's giving me attitude? The problem (and it's a tough one) is that I cannot back any of my threats or promises of consequences with physical dominance. Not that I need physical dominance to discipline him, but a child is far more likely to go into time out when they know full well that if they don't, mom will just pick them up and take them there, like it or not. Unfortunately, Mosey knows I can't pick him up and take him to time out. So I can't really tell him he's getting a time out, because I have no way of enforcing it. I've been using the star system to try to encourage him to help out (cleaning up after himself, doing simple chores), and that has helped a lot. But today we were at "Extreme Fun" (one of those inflatable toy places), and he dropped some crackers on the floor and refused to clean them up. I tried reason (it's your mess, you are responsible for cleaning it up. If everyone just left there messes around, think how filthy our world would be?). I tried enticement (remember, you get stars for cleaning up your messes). Finally I tried threats (Ok, I'm going to count to ten. If you don't pick up your crackers by the time I get to ten, you will not get your star for cleaning up today). Nothing worked, I got to ten, and that was that. The problem is, I don't feel good about taking away his star when he already did a bunch of other cleaning up stuff. If I start taking away his hard-earned stars, he'll start thinking there's no point in trying to earn them, and the stars will lose their motivating power. Any suggestions? I would have told him he had to go back to the car and sit there for five minutes thinking about how sad it is that he doesn't clean up his messes, and that he isn't obeying his mom. But I couldn't drag him unwilling out to the car, either. I need to be more creative, but it's pretty hard. He's not quite old enough to really understand long-term consequences. So me telling him that if he doesn't clean up his crackers then he won't get to play with X when he gets home, doesn't mean that much to him at this point (like the threat of losing a star). I need something immediate, but which doesn't require any physical ability on my part to enforce. Suggestions are well-appreciated.

Ok, that's it for tonight. I need to get to bed early because we're leaving the house at 5:00 AM for the 3 hour drive to Houston.

Yep, he's definitely getting an attitude.

Two pictures

Brigham at the park




Chrissy on the chair

Mosey is four!!

Aww, isn't he cute? He has been so excited about this cake!



He's still plenty silly, even though he's now four.




I didn't take a picture of him blowing out the candles of his cake because I was videoing it (see below), so I had to take another picture after I cut his piece. He wanted the piece with "four" on it, which was a HUGE piece! Surprisingly, he ate a good bit of it. Plus a scoop of Blue Bunny birthday cake ice cream which we've been saving for this occasion.




Here is the cake. My writing is pretty pathetic. I'm definitely no Christine (my sister-in-law who is a really, really good cake decorator). The gel icing I was using had some watery pockets in it which messed up the "M" and messed up some of the "cat footprints" I made around the edges. Oh well, Mosey didn't seem to care.

So today Mosey turned four! He has been very excited about his birthday. When I woke up the boys for school this morning, I said, "Happy Birthday Mosey, you're four now!" He looked out the window (it was still dark outside at 6:45 AM) and said, "I don't think my four year old birthday starts until it is light outside." A half hour later or so, when it started to get light, he told me "Now it's light enough outside for it to be my birthday." Funny kid!

I asked him if he felt any bigger now that he was four. He said, "I feel a little bit bigger, but not as big as a big boy." When Ben came home from work, he asked Mosey if he could run faster and jump higher, and Mosey enthusiastically said, "Um, I think, YES!" And proceded to demonstrate exactly how fast he could run and how high he could jump.

He really wanted to eat his birthday cake for breakfast, but I told him he had to wait until Dad got home from work. So he ate oreos instead. :-) He went to lunch with me and my friend Stephanie from church, but he was being a little snickerdoodle. I'm not sure why. Maybe it was the oreos from breakfast? The waiter brought him a complementary ice cream sundae with a candle, but Mosey was laying down on the booth bench, covering his eyes and meowing. He refused to blow out the candle or taste the sundae. So I had to do both for him. :-) He would only crawl out of the restaurant, and Stephanie had to carry him meowing (at least he wasn't kicking and screaming) out to her car. Oh well, I hope this is not to strong of an indication of how this next year will be!

I asked him what he wanted for dinner, and, predictably, he said "birthday cake!" I told him of course he was having cake, but he had to have something else, too. Under heavy suggestive pressure from Joseph, he decided on Ramen noodles. Yes, my kids have such sophisticated taste.

His cake was a store bought cake on the clearance cart at Walmart. I feel a little bad. When the twins turned four, I made two cakes, one of them a carebear cake (for Joseph), and the other a dragon cake (for Brigham). I threw them a birthday party and invited all their preschool and Sunbeam friends. Their party was 2 days after Hurricane Katrina, and we of course had no power, but we had the party anyway in the sweltering heat and 95% humidity. I had made the cakes a few days ahead of time in anticipation of the hurricane-caused power outage. I iced them that morning, but since it was so hot and humid, by the time we actually ate them, they were quite melty. Anyway, I feel bad since I went to such comparatively little effort for Mosey's 4th birthday. I resolve to have a much better celebration when he turns five.

He did get some presents. I found this box of Kapla blocks on clearance at Target. They are really cool! They are these incredibly precisely cut wooden blocks, about 1 inch wide, 3 inches long, and maybe a third of an inch thick. They are so precisely cut and balanced that you can build these really neat towers, balancing them end-on-end. All of us got involved in building with them, and when it was time for bed, Brigham told me he wanted to get a thousand piece box of the blocks for his birthday. "We LOVE them, mom!" And Mosey ended the night enthusiastically declaring, "I loved my birthday! I loved the cake and the presents and the glow-in-the-dark stickers!" (Stickers were from Grandma Jackee, and he immediately took them upstairs and plastered every single one of them on the walls of his bedroom and closet). So I guess it was a success, store-bought cake and no party notwithstanding.

Here is Mosey blowing out his birthday candles. If you watch a little beyond the blowing out part, you'll hear what he wants to do with his birthday cake. It's pretty funny.

Kids LOVE getting their picture taken

This picture is from Thanksgiving. I had done family shots for each of the Turner siblings' families, and then one big group shot, and then we wanted just ONE more shot with all the grandkids. Well, several of the kids had obviously totally had it by this point. This is the best shot I got. It wasn't even worth doing any head-swapping! But I love it anyway because it is sooo funny.

Happy Birthday to Ben

Happy birthday Ben!!
33 years ago your mom was in complete shock, having given birth not to one baby, as everyone had expected, but to TWO babies! Angee (baby A) and Ben (baby B, although the A/B correlation was not planned).
I hope this year is a good one for you, you surely deserve it.
Thank you for being such a wonderful dad to our boys. They love you.
Thank you for being such an excellent provider for all of us. I'm so lucky to get to be a stay at home mom.
Thank you for sweeping the floors and doing laundry and loading/unloading the dishwasher, and putting the boys to bed and for the countless times you lifted/carried me in and out of cars, bathtubs, beds, and anywhere else I needed to go. I hope your back is recovering. And I hope you'll never have to do that again!
But thank you for giving me the confidence that if you do need to do all that stuff again, you'll do it happily and with love.
Thank you for being the dependable rock I've needed so badly over the past several months.

I love you.

Destruction and Mayhem

Other families have the charming tradition of eating their gingerbread house on New Year's Eve. At least, growing up, my family did. I thought I'd institute that tradition with my own children. It didn't quite turn out as I imagined.


Here is our lovely gingerbread house, made by the boys and Grandma Frandsen and me in the family room of the in-patient rehabilitation unit of the hospital. It was quite the feat getting all the treats on the gingerbread house rather than in my boys' mouths.




Here are my boys getting ready to consume the gingerbread house on New Year's Eve night. I should have known what was ahead by the expressions on their faces.




And the mayhem begins.




Yeah. Other families have the tradition of eating their gingerbread house. Our family now has the tradition of wreaking complete and utter devastation on our gingerbread house.




The aftermath.

10 pictures from Christmas vacation

A horrible picture of a pretty tree.




Brigham learning to ride his bike--just one training wheel on.



And now, no training wheels!! He's doing it! Ben's close behind, just in case.




Christmas morning; Brigham's immersed in the modeling clay his cousin Ryan sent to him.




Christmas morning; Joseph is immersed in his Petz Vet computer game on the new laptop that Ben got (well, new to Ben anyway)




Joseph looking handsome while riding his bike.

Joseph practicing his biking skilz.

Mosey's just having a good time. Not *quite* ready for a two-wheeler yet.

Mosey's telling me a story, I'm not sure what it was about, but it was definitely something very important. He's wearing his new Christmas sweater.

Mosey showing me how he can do handstands. Crazy kid!

Seattle is a go!

I talked with the nurse from Seattle today and she told me the neurologist thinks I qualify and wants me to come up to be screened. Yay! She called me last night and wanted to confirm that I am in the 3.0-5.5 EDSS range, so after I talked to her, Ben measured the distance from the kitchen to the living room walls (30 feet), and had me walk 11 lengths which is 100 meters, and I could do it! Even navigating the turns. So I emailed Bernie back and told her I defiitely can walk 100 m without my cane, and today she called to tell me the neurologist approved me. She's supposed to call tomorrow to let me know when he has an availability to have me come up and be screened. Probably the 2nd or 3rd week in January.
She also said again that once M.D. Anderson is ready to recruit patients (or Baylor), I can be transferred back here. I hope they can get things started down here quickly so I can spend 3 months in Houston rather than in Seattle. So as long as I can keep at this level for the next 3-4 weeks, I should be ok.
I had a neuro appointment today and we talked about maybe doing monthly 1-day Solumedrol pulses if I start noticing a decline, so that's always a possibility. I just got done with the prednisone on Tuesday, though, and I'm not in any hurry to get back on more steroids, so I'm not going to do it unless I start noticing more trouble walking. My physical therapist says I'm doing really well and wants me to continue, so I'll probably get another 3 weeks of PT which should help as well.

In other news, something I've been dreading finally happened. I don't know how I managed to go nearly 6 1/2 years before dealing with this, so I should be grateful. Yesterday afternoon Brigham took a pair of scissors to his hair. Not a big deal, I had actually just cut his hair so it was pretty short anyway, but there are definitely two noticable bald-ish spots on his head. I think Brigham was surprised I noticed. He was very contrite and told me he wouldn't do it again. He is such a sweet boy, I hate getting after him about anything.
Today we desperately needed to do a massive toy cleanup, and Mosey and Joseph were both "too tired" to help. So they both had to go lay in their beds, and Brigham helped me pick up all the toys. And last night as he was going up to bed, he came up to me and kissed me on the cheek and said, "Thank you for making my fish blanket, mom." (I made each boy a blanket for Christmas). Isn't he sweet? I feel bad heaping praise on Brigham and not heaping equal praise on his brothers, but I gotta be honest, at the moment, Brigham definitely has the corner on sweetness.

AND, we are finally the proud owners of just ONE house!! Yahoo!! One year to the day (isn't that weird?) that we listed our Florida house, it finally closed. Ben has spared me the gory details of the final negotiations over the past few weeks, but did assure me that we got out of the house without actually having to write a check to the bank, so that's a good thing. We just won't think about the tens of thousands of dollars swallowed up this past year paying mortgage on an empty house... If only we had known a year ago what we know now! But you know, as unfortunate as all of that has been, the other stuff going on in our lives has helped to give us a little perspective. Money is just money. There's a lot of other stuff that can happen in life that is a lot more important that making or losing money. A year ago if I had known how things would end up with that house, I probably would have been pretty devastated. But this year? I don't really care. I'm just glad not to have that debt hanging over our heads anymore. Ben and I had really been struggling with knowing what we should do. Should we keep trying to sell the house? Should we rent it out and wait till the market improved? When our bishop gave us the blessing that our house would sell soon, that really answered that question. So it was just a matter of what we needed to do to insure that the house would sell "soon." I think I had been ready to make that plunge for a few months, but Ben wasn't quite there yet. But once he made that decision and called our realtor to lower the price it was pretty amazing how quickly we got an interested buyer!! Today the loans actually cleared from our account, so it is officially OVER. Phew!!!

Ok, now I better get some real food for my boys. I think they've eaten nothing but ice cream cones and Christmas treats this whole day. Disgraceful!

The Big Christmas Surprises

Christmas, "Chrissy," our new 4 month old kitten.



"Friendly," our new Russian tortoise.

Milestones

Ok, so there have been a few important milestones our family has reached recently.

1. Mosey has reached the "potty talk" stage. Yes, I remember this well from when the twins were about his age. His favorite phrases are: "Yuckyhead" and "Poopy on the potty," both of which must be yelled very loudly with an extremely silly look on his face. Brigham and Joseph unfortunately are not entirely anxious to discourage Mosey from indulging in said potty talk.

2. Brigham and Joseph have learned the perennial school-yard version of jingle bells, which goes, "Jingle bells, Batman smells, Robin laid an egg," etc., etc. They are both thoroughly delighted with this song and sing it... frequently. This must be some sort of rite-of-passage for elementarly school students. I wonder when this particular song was first invented? I remember learning it at school at probably the same age Brigham and Joseph are now.

3. Brigham has learned to ride a two-wheeler without training wheels! Wow! He was determined today that he was going to learn, and by golly, he did! He started out with both training wheels for a while, then Ben took off one of the training wheels, and after an hour or so, took off the other one, and away he went! Ben was on his roller blades and for the first few lengths of the church parking lot, he kept his hand on Brigham's bike, only letting go when he could feel Brigham was balanced. But after a few minutes, Brigham really was doing it entirely on his own. He did have a few spills (thank goodness for helmets and knee and elbow pads), and his technique needs a little refining (his current braking technique is to go full-speed until he hits a curb, a patch of grass, the side of a car...), but all-in-all, I was very impressed. Joseph got the one-training wheel thing all right but hasn't quite plucked up the courage to go without them entirely yet. But peer pressure is a powerful thing, and I'm sure it won't be long.

4. My boys are *starting* to exercise some measure of impulse control. Thursday after school I was in my bedroom and listening to the boys come up with a hare-brained idea of getting a can of pop, and then "exploding" it with a hammer. They went in the garage and got the pop and the hammer, and I was on my way out to ask them what in the world they were doing, when Brigham came in and said, "Mom, we want to go outside and explode a can of pop with a hammer, because we really like it when pop explodes." Well, with such a nice way of asking permission, I granted it. It was diet 7-up, about as messy as water, and if it was in the back yard, well, ok. I told him thank you for asking me, and just be very careful with the hammer.

So, that's cool, huh?

Marshmallow Day

Joseph marshmallow painting.



Brigham concentrating hard on his marshmallow bingo.




One of Mosey's many, many perler bead creations. Cool, huh?




Well, here it is Friday and no word back from Seattle. I hope today. I sent a short email to the nurse-coordinator, asking if she thought I might hear back today, or if I should just be patient until after Christmas. I don't want to be pushy. There is a fine line between being your own best advocate when it comes to the medical system, and being an annoying, pushy patient, which is totally counterproductive. You get *less* of what you want when you cross over that line. But I do want them to know that I want to know, so if the Neuro has already decided on me, and they just haven't had a chance to call me yet, they should call! I don't want to wait until after Christmas.The boys are officially on Christmas vacation! Of course, they were up at the same time they always are on school days, so no sleeping in for me... I let them stay up late last night so I'll probably pay for it later on with grumpy kids. I'll get them down early tonight. Last night we drove around a few of the streets around our house looking at the Christmas lights. There are some houses that really go all out! The boys really enjoyed it. On one front lawn there was a blow-up Santa on an airplane. Brigham looked at that and then a couple minutes later as we were driving down the street, he said, "Well, there could be a Santa because he only brings presents to kids that celebratae Christmas. And if he was in an airplane, he would probably have time to bring presents to everyone." I told him that was a very good thought-- a majority of children in the world don't celebrate Christmas, so he certainly wouldn't have to go to every house. And an airplane is much faster than reindeer! So Joseph and Brigham talk about this for a little while, and Joseph (who is my ultimate skeptic), finally asked Brigham, "So, do you believe in Santa Claus or not?" And Brigham replied, "I just don't know! I just don't know if I believe in Santa or not!" Awwww... Joseph asked me earilier if I know of any grownups who believe in Santa, and I told him that I don't really ask most grownups that question, but that I am sure there are probably lots of adults who do believe. (Heck, there are lots of slightly disturbed adults who think they *are* Santa!). Brigham has asked me if I believe in Santa, and I just told him that I know of stories of amazing things that happen at Christmas that really can't be explained. And left it at that. So I'm not lying to him, but I'm certainly NOT going to squash any little hope he has that Santa is real. On Wednesday the boys had their "winter party." Ok, so I'm sure their school isn't the *most* politically correct elementary school in the country, but it's got to be above average!! Their winter party took the form of "marshmallow day." The whole day they had fun activities relating to marshmallows. All the kids were supposed to wear white (or as much white as possible-- the boys dressed in their TKD uniforms), they made s'mores, drank hot chocolate with marshmallows, watched a video about how marshmallows are made, played marshmallow bingo, painted pictures using marshmallows as paint brushes, and at the end of the day, the whole first grade had a big marshmallow fight out on the field. It was very cute, and all the kids loved it (Joseph had been asking me for days when it was going to be Marshmallow Day, the teachers made a big deal about it). I went to the school and spent about 20 minutes in each of the boys' classrooms, and the kids were definitely having fun. But c'mon. Marshmallow day? I mean, they didn't even call it a winter festival, or a holiday party, or anything. It was as far removed from the holidays as you could possible get! Last year in Florida (which you would think would be a whole lot more PC than Texas, right?), they had a holiday party, and it was really cute. Of course nothing religious, but they decorated Santas and made "reindeer treat bags," and ate candy canes, and made construction paper menorahs. At least they were acknowledging the existence of religious holidays in December, acknowledging the whole reason we *have* a "winter break!" I had been a little encouraged about the school's approach to the holidays, because there was pine garland with red bows strung up around the kids waiting area in front of the school, and there was a Christmas tree inside the front door. Which the boys reported had a Santa hat on top. But things are not entirely how they appeared. I went to the school on Wednesday with Sister Kelley (bishop's wife), who is more "in the know" about things in the school, and she told me that it is parent volunteers who are in charge of decorating the school for various holidays/seasons, and therefore one of the parents who did the garland and the Christmas tree. And the school has been getting call after call from angry parents who think the pine garland with red bow is too overtly religious (?????), and furious calls about the Christmas tree. Immediately the school put up a display right next to the tree with a menorah and this Ramadan candle thingy and a Kwaanza display. I do have to give the school credit (marshmallow day notwithstanding), because there are are lots of other schools who would simply immediately take down the offending decorations with the first angry call, and they have not done so. But still, I'm just amazed that there are parents who are seriously offended at a pine garland!!! My, how things have changed from when I was in first grade. Ok, that's it for this morning. I'll send an email out whenever I hear anything from Seattle.

Shopping nearly done!

Hello Everyone,

This has been a pretty good few days. Yesterday some people from our ward (the Bruderers) came over and installed hand rails around our bathtub. They did SUCH a good job, and it is something Ben and I surely could not have done ourselves. He's going to come and put another railing up the stairs, too, but he wanted to match the stain, first. I just can't believe all the things our ward has done for us.

And we've had a little "pixie" leaving us 12 days of Christmas treats. Tonight we got "4 calling birds," which were 4 toy cell phones. So cute! The boys have had fun seeing what comes each night.

Last night Ben and I got a babysitter (first time we've gone out by ourselves in... about 9 months I think??), and went Christmas shopping. I had done a good part of it during the week, but we needed to go out together to look at a few things. I am VERY excited about Christmas morning around here. I think our kids will be very happy. But I'm not telling what we're getting, you'll have to wait till Christmas!

The boys have been pretty funny about what they want for Christmas. Friday Joseph told me he wants a puppy and a computer and a phone (um, yeah, I'm really buying my 6-year-old a cell phone!). Brigham wants a kitten (of course, he's been asking for that one for 6 months now), and a race car track. And Mosey? When I have asked him what he wants, he just says, "A glow-in-the-dark thing." So, does anyone know where the "glow-in-the-dark-thing" aisle is at Walmart? I couldn't find it!

As most of you know, we don't do Santa Claus at our house. Not really my choice, but that's how it has ended up. A combination of a husband who doesn't think it is a good idea to baldly lie to our children (I know, I know, bizarre, isn't it :-) ?) and very curious, very literal, very persistent children. But Brigham still *wants* to believe, I can tell. He has been writing stories about Santa and his elves, and we have this Santa advent calendar with little drawers with ornaments that you take out each day. Tonight he went up to the Santa, kissed him, and said, "Thank you Santa for bringing us presents!" Awwww, sweet, isn't he? I do still wish we did Santa at our house, there is such a short time in a child's life when they can believe in magic.

There is a good side to not doing Santa, though. Joseph wrote and illustrated a story this last week called "The Christmas Tree." It reads: "Once upon a time there was a pine tree. It got cut down. Then there was a very important birthday in Bethlehem. They brought the pine tree to Bethlehem and they put on ornaments and a star on top of it. Then they made up the celebration called Christmas and they celebrated it every 25th of December. The End." So, obviously at least Joseph is cognizant of the fact that Christmas is about Jesus's birthday. Although even with that, his literalist streak comes out. He likes to tell us, frequently, that Jesus wasn't actually born on Christmas day, but that he was really born on April 6. So I asked him if maybe he'd rather wait until April 6 to open his Christmas presents, but NO, he is still willing to celebrate Christmas in December. LOL!

Today at Church Mosey had a break-through with his drawing skills. As smart a boy as he is verbally, and with reading and math, his representational skills have always been a bit... lacking. I get a chuckle out of seeing his artwork from preschool up on the wall alongside of the other 3-year-olds' artwork. He has enjoyed the "scribbling" stage of artwork very much, and has had no desire to move on to actual representational drawing. But today at Church, he drew a picture of the TV room upstairs, complete with TV, carpet, bookshelves, and people watching the TV. Granted, I'd have no idea that is what the picture was without him translating it for me, but once he pointed out the elements, I could actually sort of see what he was drawing! Wow! I was thinking to myself that I'd have to be sure to save this picture for his scrapbook, when the scribbling urge came over him again and now it is a picture of the TV room pretty much completely obscured by scribbling... Oh well, at least I can record for posterity (since I know his posterity will be totally fascinated by this particular bit of trivia) that on December 16, 2007, Moses Turner made his first representational drawing.

Speaking of drawing, I'm a little frustrated. I've been working with this woman on a drawing she wanted done of her son, to give to her husband. She sent me a photo and told me she wanted pretty much exactly what was in the photo. So I've been working on it the past few weeks, wanting to get it done and sent off before Christmas. I finally finished this weekend, and sent her a picture of it to get the go-ahead (I hoped) to send it off to her. Well, she decided she wants her husband's hand out of the picture, as well as her daughter's face out of the background, and "even though I know he is all wrapped up in a hoodie," she wants his body "more distinct." But the good thing is, at least I got the face "exactly right!" The problem is, I can't make all those changes without starting completely over again. Sigh... I don't disagree with the changes she wants made, in fact I think her husband's hand is quite distracting, and the hoodie a bit too all-consuming. I do kind of like her daughter's face in the background, though. But then why did she want me to use that particular photo?? Oh well. Every time I do one of these drawings, I tell myself I'm not going to do it again because it always ends up being such a hassle and taking me usually 2-3 times longer than it should. It's a good thing I generally enjoy the process. I did tell her I am not going to be able to work on it until after Christmas.

Ok, that's it for tonight. Here begins my week of nervousness as I await word from the cancer center in Washington on whether they want me to come in to be screened for the study. They have all my records and I should hear back from them mid-to-late this week. Hoop #1. We'll see if I get through it.

Fffffrrrrreeeeezzzzziiiiinnnnngggg!!!!

Well, I have managed to miss both of the really cold fronts that have come down through Austin, the first when we were in Phoenix, and the second when I was in the hospital, but I didn't miss this one. Yesterday it was near 80 and today it didn't get above 42, and drizzling all day. Yuck! There is a reason I don't do winter!! I hate being cold. I guess it makes it feel more like Christmas time, but mostly I just feel cold. :-)
We had a really nice weekend, before it got cold. Last Friday night we went to eat at a Chinese restaurant that had been recommended to us, and I was not disappointed. It's hard to find a good Chinese place, either they're way too Americanized or just a little iffy in the sanitation department. But this was a very nice place (but not too nice, or we couldn't bring the boys!), and very good food. Afterwards we went to a Christmas tree lot and picked out a tree. I'm not sure what kind of tree it is, but it is the best tree we've ever had! It must have been cut very recently because the needles are all still soft and green, and it is naturally just the perfect cone shape. Ben got it all trimmed and set up in the Christmas tree stand that night while the boys rode their bikes in the driveway.
Saturday morning was our ward's Christmas breakfast. This in lieu of a ward dinner, and I thought it was great. MUCH better for kids to have a breakfast, than to be up too late and tired and grumpy sitting through a program. There were musical numbers, our bishop spoke, and good food. This was my first time showing up at our Church building in more than a month! (Because we had Stake conference, and then we were gone to AZ for two Sundays in a row, and then I was in the hospital). It was nice to see everyone and everyone was really, really nice and came and asked how I was doing and everything.
After the breakfast the boys rode their bikes in the parking lot again. A few months ago I had brought them all up to the Church to practice on their bikes, and they just weren't quite big enough/strong enough/coordinated enough, so it was fun to see how they've grown and improved since then. Then we did a Walmart grocery store run to get a bunch of food ready for the afternoon. At 2:00 three Young Women from my ward came over and helped me make food. I'm going to try a once a month (or maybe once every two week) cooking thing to simplify things around here, and to give my kids something better to eat that frozen pizza, macaroni and cheese, and ramen noodles! LOL! So we made meatballs and chicken paprakash (sp?), and chicken enchiladas, and now my freezer is full. The girls were great, they did most of the work and I sat at the table and directed, and afterward they cleaned everything up! I think they had fun, too. We ate about half the meatballs last night (I just boiled some spaghetti and heated up the sauce), and I think it was a hit. We had no leftovers, anyway.
Sunday was church, and guess what, they moved the Young Women room for me! It used to be up a half-flight of stairs and now we're down on the regular floor so I don't have to try to navigate the stairs. I feel bad, though, because the only available closet is in that upstairs room, so now the girls have to lug everything up and down the stairs every week.
After church Ben put lights up on the tree and then our home teacher came, bringing Christmas cake which is always welcome. Later on the boys and I decorated the tree. The big boys are now old enough to be interested in this process, and actually help. I believe every year until this one, I've been the sole tree decorator. Of course the ornaments did tend to accumulate right at the arm-level of 3 and 6 year old boys, so I had to surreptitiously reposition some of them, but the end result is beautiful. Ben put up the star that mama got for us when she was here last week.
Monday was back to school for the boys and just me and Mosey at home. He is heavily into these bead thingamajigs that you iron to melt together to form various shapes. Hard to explain. He's made probably 8 of them so far, and he spent most of the day after preschool making more. Well, he starts them anyway, and then comes up to me and tells me he *needs* my help, so then I go and finish it for him. I'm sure it's great for his fine-motor skills. Heck, it's great for mine! Mosey is such a funny little guy. He's definitely learning to be a bit more of a contrarian than he has been thus far. The other day I was saying something, I can't remember what, and he says in reply, "Mom, when you tell me something, I just say no!" And isn't that the truth! He's also got this mistaken belief that if he just says "please" often enough and loud enough, that I will ultimately relent. So far he hasn't been justified in this belief, but not for lack of trying on his part.
I also had a long conversation with the stem cell transplant coordinator from Seattle. She was also very positive and I'm getting all my records faxed and mailed up there this week. The only down side of that conversation was when I asked her if this procedure is ever done for MS patients outside of the clinical trial arena, and she said, no, so far it's only been done in studies, it's not the kind of thing you can just ask your doctor to do. I'm not sure I understand the reasons for this, but anyway, it is what it is. So the pressure is still on for me to get accepted into this study.
Yesterday we had our house cleaners come for the second time, and it was great. At least one day every two weeks when I can feel peaceful and calm about the state of affairs in this house. Tonight as I'm looking around, well, it's probably still fairly sanitized, but not so peaceful anymore. This is my fault, though, because this afternoon I was quite occupied getting some stuff ready for mutual tonight, and then the boys had TKD until 6:30 and then I had to run off to Church, leaving Ben with dinner, reading, and bedtime. Tomorrow afternoon I'll put them to work. Anyway, back to yesterday. Stephanie Coleman from my ward (she's the one who's been coordinating everything from the ward) came and took Mosey and me to the mall and then to Burlington Coat Factory to do some Christmas shopping. I'm reminded again why I don't enjoy shopping, but I did make some good progress. And I couldn't have done it without her. I'm doing ok walking short distances around the house, but even walking the length of Burlington a time or two, let alone the mall, wouldn't have been possible. So she pushed me in the wheelchair and carried bags and stuff. I had a great time, although I don't think she got much shopping done for her own family.
In the afternoon after the boys came home from school, my physical therapist came to work with me for about 45 minutes. It was good but very hard, and honestly a little depressing. I know, I know, two weeks ago I could barely move my toes, and today I'm walking, so what's there to be depressed about? And I'm not really depressed, it's just... weird. One of the exercises she had me do was to sit on the edge of the couch with my feet extended on the floor and then draw my feet back toward the couch. This is to work on the hamstrings. Ok, so I barely managed to do 10 with my right leg, and then with my left (my worse side), I *barely* was able to do four before my leg just wouldn't obey me anymore. The boys were watching me, and Joseph was very proud of himself as he was sitting on the floor also doing the exercises, and excitedly telling me how many *he* could do... She's coming three times a week for three weeks so we'll see how much I can get back. I don't know how much I am going to regain after this last attack. I'm not going to get as much back as I did after my last round of steroids, I can tell that already, but I do think in two or three weeks, if given plenty of time, and a very straight, very flat surface, I could do the 100 meters without a cane. A day or two ago I was feeling a bit more cocky, but today I was in the bathroom just walking to the closet (thinking I didn't need my cane since I was just going from the bedroom into the bathroom) and somehow lost my balance and ended up on my back on the tile floor. So that kind of sobered me up a little. And I'm sporting another lovely bruise, this time on my backside. Sigh... I am getting better at falling, though, isn't that a great skill to have? You have to think FAST when you're falling, and try to land in the least painful way. I didn't smack my head on the tile floor, which I very well might have considering the way I fell, so I was pretty proud of myself. I'll definitely need to add that life skill to my resume, don't you think?
But other than my lovely bathroom acrobatics, today was a good day; I drove my van!! I felt good driving, too, my legs were able to do what they needed to do to drive safely I thought. Mosey and I did a couple of errands and I think he was just happy to not be trapped in the house all day with me! After school the boys played, Brigham and Mosey very busily making more bead creations. Joseph wanted to make one too, but he just doesn't enjoy the little detail work, and he kept accidently knocking his beads off and getting really frustrated and crying. Finally I told him that he had to either pull himself together, or I wasn't going to let him play with the beads anymore. I told him the beads are supposed to be fun, and if it isn't fun for him, there is no point in doing it! I told him that Dad really doesn't like doing that kind of stuff and it's perfectly ok if he doesn't either. He actually seemed to accept this pretty well, and then brought in Mosey's tricycle and rode it around and around the house instead. :-)
Brigham was SO excited this afternoon. I think he's been bitten by the Christmas bug. He was so funny talking with Mosey, at one point he said, "When I talk to you, do you get excited and have the feeling that we're going to Disney World?" And Mosey answers, "Yeah, I think I do!!" The two of them can get *really* enthusiastic about stuff. Earlier, when opening one of the bags of beads, Brigham accidently spilled a whole bunch of them. I sighed loudly and told him he needed to let ME open those bags up, and he said, "I'm sorry you are stressed out, mom, don't worry, I will pick them up, I don't want you to have to do more work." Awwwww, isn't he sweet? Of course, I did end up cleaning up most of it because those little beads just roll away whenever you try to sweep them, it's really pretty hard. As I was sitting on the floor (ouch, on my poor, bruised bum!) sweeping them up with a broom and dustpan, Brigham says, "Mom, you're really GOOD at that!" Yes, I am very talented.
Tonight we had a "Gifts from the Heart" program for mutual which was beautiful and fun. Everyone brought or did something demonstrating a gift they've been given, and then our YW Pres did a really good job pulling it all together and talking about using our gifts to give to others, how gifts from the heart are much better than any other kind. She did a really good job and I can't do her justice trying to describe it. There was artwork, crafts, music, food, story-telling, and a really nice slideshow one of the girls put together with pictures of Christ set to "What Child is This." It was nice.
And now it is 10:16 and time for me to go to bed!!
Thanks for reading my laundry list of everything that's been going on in the last few days. Note that there was no actual laundry listed anywhere on that laundry list. That is because Ben has been doing the laundry. My hero...

Good news on the stem cell transplant front

I finally have been able to speak with some actual humans at a couple of the study centers, and got some different and better news than I got from the person at Baylor. The contact at Baylor told me I must have tried and failed all four of the standard MS drugs in order to be considered for the study. There are three different interferon drugs, and two (Rebif and Avonex) are actually the exact same interferon, just a different delivery system, and then glutiramer acetate (Copaxone). I've done Copaxone and Rebif, but not Avonex or Betaseron. I was really upset to hear this because she told me I'd need to be on those other two drugs, one at a time, for at least "several months" and continue to show progression in my disease in order to have "failed," and therefore qualify for the study. This was upsetting because the last thing I should do is waste more months of my life trying drugs that already have been shown to be ineffective for progressive MS.
Anyway, I talked to contacts from Southwestern and University of Washington, and both of them told me I did NOT have to have taken all four drugs, and both thought I sounded like a good candidate for the study.
The Texas centers are just about ready to start recruiting patients (the next 3-4 weeks), and Seattle is already recruiting patients. In fact, they've already finished the procedure in 3 patients already. So I can start the screening process as soon as possible either in Seattle or at City of Hope in LA (I haven't talked with an actual human there, yet, but supposedly they are also currently recruiting patients), and then when the Texas centers are ready to go, they can switch me over to one of them. That sounds like a good plan to me!
The other thing I learned is that it will probably take around 6 months from the start of screening to the actual transplant. This is because I will have to get medical insurance approval for the trial. The funding for the trial doesn't cover the actual procedure and hospitalization. This is good and bad news. Bad news because it takes so long!! I'm afraid of what can happen in 6 months. Also bad because the point they "capture" my disability level is not at the very beginning of the process, but somewhere down the line. So I need to try to stay as healthy as I possibly can. They did say that even if I deteriorate after the point that they've "captured" my disability, it doesn't matter, I can still participate. But it is good news because apparently at least in Seattle, they have not had problems eventually gaining approval from the various patients' insurance companies. I guess they have coding procedures that help this along. The transplant itself is not experimental, just its application in MS. So anyway, if anyone knows anyone who works in claims for United Health Care, let me know!!! I need a friend there who can expedite things as quickly as possible. But the really good thing is that even if for whatever reason I do not get into this trial, apparently there is a possibility of getting insurance to pay for it anyway.
So, that's the news.
One other note. I know it may sound as if I am totally hanging my hat on the hope that this transplant will "cure" me. I can hear myself as some of you may hear me, and I know that some of you are concerned that I'm starting to really count on this working, and that I'm blinding myself to its risks, and the real possibility that it will not work for me. I just want you to know this is not the case. We understand the risks, believe me. But the mortality rates have gone down dramatically in just the 10 years this has been done in Europe, and the risks of me dying from this procedure are almost certainly smaller than the risk of me dying from this form of MS over the next 5 years. That's the dirty little secret about this form of aggressive MS. People actually die from it. There will be all sorts of psych evaluations to make sure we fully understand the risks before we'd ever be approved for this anyway. And as for us counting on this "curing" me, we're not. So far this procedure has not been a "cure." First of all, there is no way to reverse nerve damage that has already taken place. I'll never be "normal" again, and that's a fact. However, this procedure has been very successful in halting or greatly slowing the progress of the disease for at least a few years. The longest they've tracked patients so far is 5 years, and there are a good percentage of patients that have remained in remission for that long. And any time I do gain in remission is that much longer I can raise my kids without being totally disabled. And it buys me that much more time as new medications and treatments come down the pike. So in the event that my MS returns (and in all probability it will, eventually), hopefully several years down the line, my treatment options will (I hope) be better than they are now.
And the fact is, I don't have a lot of options. There are two other drug options that I could pursue (Tysabri, Fingolomid), and definitely will pursue if this transplant doesn't pan out for whatever reason. But taking these drugs now will disqualify me for the transplant, so I feel I need to follow this path to its end before I go the Tysabri/Fingolomid route. There are some clinical trials for new medications that I could sign up for, but none that are offering the kind of chance for remission as the transplant study. Plus, you enter into these trials for medications to take for 5 years or whatever, and you have a 50% chance of getting the placebo. Nice. Yes, I understand the need for double blind studies and all that, but I sure have a different perspective as the patient that is desperately looking for something to help me! I don't want a placebo!! Or I could do Novantrone for 3 years, hope it doesn't damage my heart permanently, all the while realizing it has never shown much benefit for anything other than secondary progressive MS which I don't have. And after 3 years, what then? The Cytoxan is still an option but this is apparently losing favor among neurologists because it is such a harsh treatment for such mild benefits. Honestly, my options are quite grim, and the transplant study has by far the most potential for really making a difference in my life. So we are running with it for now. It is giving me hope, and that's a big thing for me. I need to feel that there is some hope! But I'm not blind or stupid. I know it might not work, and if that happens, we'll deal with it. I'm not going to commit suicide or anything if it doesn't work. But I need to know I have tried EVERYTHING. And I need to try it NOW while I still have nerve function left to save!
So that is my big disclaimer. From here on out, I will probably act pretty enthusiastic about the stem cell transplant (because I do feel enthusiastic!), but please understand that I'm not blind or stupid. I won't give this disclaimer every time I speak of this procedure, so just consider it understood, ok?

I promise my next post will contain NOT A WORD about all this yucky stuff. I just know that some of you want to know.

Home from the hospital!!

Don't look too closely at this picture. Because, um, yeah, I've looked better. My kids are cute though!


Ok, this is going to be an incredibly self-obsessed post. I'm only going to talk about me, so if that is going to annoy you, you've been warned! I am going to write this not just for those of you who want to know, but also for my own records. I've been trying to create a timeline of the appearance of various M.S. symptoms, and I've found that going through my archives of past emails I've sent is the most accurate record of what's beeng going on with my illness. So anyway, sorry in advance for the boring laundry list of medical stuff.



Well after 10 long days in the hospital, I am HOME!!! The hospital stay was pretty good. I went down to MRI the first night I was there, and that was pretty grueling. Three hours in the MRI machine isn't too fun. In the past I've been able to kind of zone out in the MRI and it hasn't been too bad. But this time I had to do the brain and spinal cord, with and without contrast dye, all back to back. So it was a VERY long time. The worst of it was the spinal MRI. That one takes the longest. They scan your whole spinal cord and then pull you out and inject this dye in your vein and then do the whole thing again. But you can't move at all! You have to remain completely still for the whole thing. They strap your head in this sort of vice thingy, and the MRI machine is this little tube so you can't really move anyway, even if you tried. Unfortunately, I got my head on a bad pressure point and not even all the way through the first half of the spinal scan, the back of my head began to really hurt. And then my sinuses didn't like something in that room and I couldn't breathe out of one side of my nose with absolutely drives me INSANE. And I couldn't move at all! The pain from my head and the annoyance of not being able to breathe right were bad, but the worst of it was knowing there was absolutely nothing I could do about either one, and I had no idea how long I had left to lie there. There's no clock or anything to be able to count down, and you really do lose track of reality while you are in the machine. Toward the end I was seriously getting close to a panic attack, wondering if I should just call out and tell the MRI tech I couldn't take it anymore, or what! But I made it, she pulled me out, moved me over to the brain coil, and then I was able to get my head in a more comfortable position, I could breathe slightly better, and I knew it would be over soon. I felt like such a baby because it wasn't as if I were in excruciating pain or anything even close to it. I was just getting panicked and didn't think I could do it!! The MRI tech was really nice, though. It was actually her second to the last day working at the hospital, and her last night on call. She came up to see me the next evening to say goodbye, and I thought that was really sweet. I don't think she went to say goodbye to all her patients!

So anyway, for the first 5 days I was up on the acute care floor, I had my own room and lots of time to do nothing. I read through the conference edition of the Ensign, read "The Road to Serfdom," watched some movies, read through the last couple of months of Time Magazine, slept, and did a couple of sessions with Physical Therapy. On Friday night they moved me down to the inpatient rehab clinic and that wasn't quite so pleasant. I had to share a room with a woman who had broken her hip. The first couple of nights she was in a lot of pain and woke up frequently groaning and moaning. She also was not as pleasant to some of the nurses as she could have been, and spent most of her time when the doctor came to see her, badmouthing her other doctor that did her first hip replacement (I guess her first hip replacement had become lose, and she was getting ready to come in for a revision when she fell and broke her OTHER hip!). It is not a good idea to badmouth a doctor to another doctor! She was also had long and frequent telephone conversations with lots of people where she felt the need to complain about the nurses, doctors, physical therapists, etc., etc., etc. I was feeling pretty sorry for myself for the first couple of days. Then I got really disgusted with myself and realized that I was being incredibly self-centered. I realized that I was so lucky compared to most of the other patients there, because I was not in any pain. Many patients were there because of injury or surgery, and their rehab was so much more difficult than mine. How can I begrudge this woman her right to complain and have loud phone conversations when she was certainly in pain the whole time. Anyway, she went home on Tuesday so my last three days were quiet and peaceful. In rehab they have you do several sessions with Occupational Therapy and Physical Therapy each day. OT, for those who don't know, is sort of like "life skills." They teach you how to do things around the house, laundry, dishes, making beds, etc. They have a couple of rooms set up like a house, with a bathroom area, kitchen, laundry, bed, closet, etc. Physical Therapy is just physical stuff, exercises and stretching and stuff. It was great, day by day, to see the clock turn backwards and be able to regain skills I didn't have the day before.

I was worried the transition home would be hard. It was the last time I was hospitalized. But I'm doing fine! I had a little breakdown at the hospital the night before I left, not really about anything in particular, just generalized anxiety and worry about what was going to happen. When I was in the hospital, I felt like I was "doing" something (even though I was doing nothing!), and the idea of going home just to wait for symptoms to come back was pretty depressing. But yesterday afternoon and today have been just fine. I'm so glad to be with my boys again, the weather has been gorgeous, and I had some good conversations with the contact people at a couple of the Halt-MS study centers.
So I feel very good, not least because I am doing so much better physically than I was when I left!



OK, so here's where I'm going to document symptoms and stuff, so ignore if you want. This is just for my records.
I had 5 days of Solumedrol treatment (the IV steroids) in the hospital and I'm on a tapering dose of Prednisone for the next month to try to extend the benefit of this round of steroids as long as possible. As you all know, I just LOOOOOVE steroids, so I'm SUPER excited to get to be on them for the next month!! (Insert dripping sarcasm). But I'll take it if it gives me a longer time feeling good!



I'm also on 20mg Baclofen 3 times a day. I started taking the Baclofen at the lower dose, 10mg 3x/day a month ago, but it really wasn't controlling my spasticity. The 20mg 3x/day seems to be working pretty well. I can feel the spasticity creep up when it gets close to my next dose, but not to any degree like it was before. At first the Baclofen was giving me headaches and making me feel nauseated, but I think I've mostly adjusted and except for a few headaches here and there, it's not too bad. This is a pretty intense drug, though, one of the big warnings on the label is NOT to discontinue use suddenly because doing so can cause hallucinations and seizures. Nice, huh? It works, though.

It is really amazing the difference 10 days makes. I am up walking around, that's the biggest thing. I don't think I need the walker I was using in the hospital (also it is the ugliest thing imaginable, no way to glam that thing up!), so my cane and I are getting to be friends again. I am using the wheelchair to wheel myself longer distances, not really because I need it, but just to try to conserve energy (this was a big thing I was working on with the occupational therapists in the hospital). But it is amazing to be able to just stand up when I want to, and walk when I need to!



In the hospital, I started seeing results from the steroids pretty quick, after just a couple of days. It was really exciting to wake up each day and discover more that I could do than I could do the day before, instead of the other way around! One of the biggest reliefs to me was getting my foot-flexing muscles back. Man, there were so many times when I just wanted desperately to be able to flex my feet! I made Ben come over and flex them for me sometimes, but that inability to move my feet was extremely disconcerting, especially at night. And then, getting my hip flexor muscles back was huge! That's a pretty important muscle for walking, as it allows you to lift your foot off the ground. I had been "walking" by sort of slinging my hips so that my leg would swing around, or else just dragging my foot along the floor. This is a very exhausting and dangerous way of walking! But probably the biggest help to me was getting my abdominal muscles back. I never realized that you use your abdominal muscles for nearly everything. Everything from sitting up, turning over in bed, raising your body from, for example, a chest-to-knees position, everything. I'm also feeling much better in more subtle ways. For example, I have lots of trouble controlling my blood pressure when my M.S. is acting up. I've noticed this periodically during bad times of MS I will have trouble blacking out whenever I stand up, or even sit up too fast. In the hospital, it was interesting to see how that stabilized over the days I was there. The first few days I was there, my blood pressure was all over the place. Mostly very low (85/50), but occasionally randomly really high (120/80, which is very high for me). As the steroids kicked in, I stabilized to where I normally am (110/68), and stayed almost EXACTLY there, only varying by a couple points at the most. I think just the fact of having stabilized blood pressure has had a huge impact on my overall feeling good. My breathing has gotten much better, too. I had one final bad breathing episode on Sunday night, but nothing since then. The deal with my breathing was two fold. First, I had a sensation of a belt tightening around my ribs, compressing my ribs and making it difficult to inhale. This was the strangest sensation, because for the life of me, it felt JUST like a belt really was around my ribs! I'd have to feel to make sure there wasn't anything there! Not just the tightness, but on my skin I really felt the sensation of something wrapped tightly around me. It is really bizarre to have your body telling you one thing, and your eyes telling you another. But the other thing with my breathing was being unable to control my diaphragm very well. I've noticed this over the past couple of months, mostly at church when trying to sing. Being able to sing well depends entirely on being able to control your diaphragm (well, ok, being able to match pitch is important too!). I do not have correct vibrato technique-- I know you're supposed to actually use your vocal cords to produce the vibrato, but I never learned how to do that, so I do it using my diaphragm. Well, over the past couple of months, I became unable to do produce vibrato at all. And I just couldn't draw enough breath to be able to sing through more than a measure or two at most. Reading scriptures to my boys in the morning was laughable, because I'd have to stop and take another breath every 3 or 4 words. Anyway, last Sunday I got a "pass" to be able to come home for a couple of hours. We watched the First Presidency's Christmas broadcast, and I discovered I could sing again!! It was great! I've been able to sleep much better as well, not waking up feeling like I was forgetting or unable to breathe.

Other random things that have also improved my quality of life: ITCHING has stopped. Another weird MS symptom is generalized, random itching. Do you ever get an itch, and then try to scratch, but find that when you scratch, it's not really that place that itches? Does that make any sense? It really drives me crazy!! But that's gone away since the steroids. Bladder spasticity is much better. Ok, I know this is way TMI, but I seriously had to get up to the bathroom EVERY TWO HOURS!! My bladder was so spastic, it couldn't expand hardly at all, so I'd have to pee all the time. I felt like an old man. It's also really hard to sleep when you have to get up every two hours, and ESPECIALLY when it take you 10 minutes just to get yourself up out of bed, into the wheelchair, into the bathroom, and then back and into bed again. So the combination of not having to use the wheelchair just to go across the room to the bathroom, and then not having to get up every 2 hours, has been so, so great.



In the week before I went in to the hospital, I was struggling with feelings of claustrophobia. I never thought about claustrophobia in terms of paralysis, but it was awful. I couldn't move my legs, and I would start to feel trapped, even though I wasn't physically confined by anything. This was especially troubling at night. That added with my issues breathing, and I came close to having full-blown panic attacks. I asked my doctor about the claustrophobia thing, and he said the feeling of claustrophobia is more related to feeling powerless and out of control, rather than a physical reaction to being confined. That made sense to me. I wonder of para/quadraplegics have that problem? I guess you'd get used to it after a while.



So that's the run down on what's going on with me symptomatically. I feel like I'm back where I was about 4 weeks ago in terms of my ability to walk. I feel ok walking short distances without my cane (like, from my desk to the kitchen table, etc.), but it's definitely still hard. My legs still feel very weak and stiff. I know some of that is muscle atrophy after not being able to walk for a few weeks, and that should come back with use and physical therapy. But some is probably also due to nerve damage. It will be interesting to see how much more improvement I see over the next week or so. I'll be doing physical and occupational therapy 3 times a week for the next three weeks to maximize the improvement from the steroids. I have a little anxiety over this, because I am going to be finding out where my new "baseline" is, and I'll have to reconcile myself to whatever remains as likely being permanent. But honestly, it's ok. I feel like I'd be more than ok for the rest of my life if I can just stay where I am right now!!

Ok, I better go now since I'm ignoring my kids and they are doing experiments and that is never a good sign.
I'm just so glad to be home!