Financial Menace

Mosey strikes again. I pulled out my check book to pay the piano teacher, and found a check that Mosey was apparently writing for me.
This kid is NEVER getting a credit card.

Houston Report

Things went pretty well yesterday. The boys were very good on the drive over.
We had a minor "incident" in the parking garage right before my neurologist appointment. This is the tightest, most obnoxious parking garage ever. We had to go up 10 levels to find a spot. And Ben accidentally clipped the corner of an Acura SUV going around the corner of level 5.

Obnoxious. We left a note an the guy called last night, very grateful that Ben owned up. But we know it will be a pretty chunk of change since the guy said he'd just take it to the Acura Dealership. Oh well.

My neurologist's evaluation was good and bad. The walking test was very hard, as I thought. I only made it 70 meters, which definitely was worse than last June's 150 meters. But all my other tests were great. My upper body strength and coordination is perfect, no problems with the eyes, and I passed my math test with flying colors again. :-) (I'm trying to find my previous post about the math test, but can't find it. It involves listening to this guy on a CD saying a sequence of numbers about 3 seconds apart. You have to add the first two, and say the answer. Then he says the next number, and you have to add that to the last number he said (NOT to the sum which you just said), and then say the sum. Then he says a new number and you add that one to the last number he said, etc. It gets complicated trying to add the two numbers while keeping in your head the last number the guy said. Anyway, the nurses were all impressed last year when I got 100%, and this year the nurse (a different one), was equally impressed. What can I say? I'm good at multi-tasking. And addition.)

I talked to him about the Baclofen pump, and he thought that was a good idea. My leg strength seems unchanged to me, but my stiffness really is a problem.

Anyway, I am trying not to let the walking test discourage me. My next evaluation in another 6 months will be more telling. If I've stayed the same, then great. I can hope for that. I did have a really terrible exacerbation in the hospital after a bad reaction to one of the chemo drugs, so it is very possible that my decreased function since last June was due to that episode.
I also had 19 vials of blood drawn, an EKG, and my MRI at night.


Here is what an MRI machine looks like. You lay on the stretcher thing and they roll you inside the cylinder. But not before strapping your head into this cage thing, and stuffing small towels around the sides of your head so you literally cannot move at all. I try to keep my eyes closed because if I think too much about being trapped inside that little cylinder, I can go a little nutso! Once inside, the magnet starts, and it makes the WEIRDEST noises. Bangs and bumps and machine-gun sounds, and buzzes and all sorts of weird things. Pleasant. At least my MRI machine, being at the Texas Children's Hospital (where they have a super-duper fancy high resolution MRI machine), had a bunch of Disney stickers on it. :-)

Anyway, the MRI was miserable, as usual. It's so odd. My first couple of MRI's I ever had were just fine. I even was able to fall asleep in the MRI machine (weird, I know). But the last few have been awful. Either I get congested and can't breathe through my nose the whole time (wah, wah, I know, but I can't tell you how much I HATE that), or my head just gets in the wrong position and HURTS. That happened last night. It started to hurt not too long into the MRI, and by the time they pulled me out, my head hurt so bad, I thought I might throw up. There is something absolutely unendurable about having pain when you cannot move. I kept trying to talk myself out of it, telling myself that objectively the pain wasn't *that* bad, I've had much worse. But something about not being able to move in any way just made it so horrible. I actually accidentally moved slightly during one of the scans and they had to repeat it. I could have sworn I did not move even a fraction of a centimeter, but apparently I did.
I went through every poem the boys have memorized this year. Sang (in my head) every primary and hymn I could remember. Tried to remember old Girl Scout songs and campfire songs. Anything to distract myself from the pain and claustrophobia.
At least it wasn't the 3 hour MRI. It was about 1 hour 35 minutes, and I was SO glad to get out of that thing. If I were to design an MRI machine, I'd put a little clock inside that ticks off the minutes left. It's easier to endure pain or discomfort when you know when it will end. When you have no idea, it is pretty hard. And my sense of time gets all messed up in the MRI machine, and it starts feeling like I've been inside for hours and I'll never get out.
Thank goodness it is 6 months until my next one. I counted and I believe this is my 8th MRI. Too many.
I don't know if or when I'll get results from the MRI. But like I said, I'm going to try not to read too much into the results and wait another 6 months.
At least it is over! We got home at about 1:30 AM, and slept in late this morning. Now I have to get busy with lessons!
Thank you for everyone's prayers and positive thoughts. I needed them!

Nervous

I'm off to Houston in the morning.
At 1:00 I have a neurology appointment, then at 7:30 PM my MRI.
I'm most nervous for my neurology appointment, mostly because I will not have any results from my MRI for at least a few days.
I will be having the full EDSS scoring tomorrow, which involves a physical exam (testing reflexes and a bunch of other things), plus the walking tests (a speed test and length test), some mental tests (math games), and manual dexterity (peg tests). The walking test is what I'm most nervous about, because I'll know immediately how I did compared to last June. I had my last EDSS scoring in June, just before the bone marrow transplant. I walked I think 150 meters then. I have to walk with NO assistance, without stopping or getting my balance on the wall or anything. I haven't really tested myself here at home, because there's not a good, unencumbered pathway to walk, so I really don't know how I'll do. If I do worse than 150 meters, I'll be very bummed.
I don't think I've deteriorated since I've come back from the transplant. But I also don't feel like I ever recovered quite back to where I was before the transplant. So I'm not really sure where that leaves me.
My spasticity has really been bothering me; it's my biggest physical complaint at this point. I will ask my neurologist tomorrow about getting a Baclofen pump. Right now I take Baclofen (my antispasticity med) 3 times a day. I'm almost at the maximum dosage. I could take it a 4th time, and that is the maximum allowed. But the pump would deliver a continuous dosage right to my spinal cord, so would allow for a more even dosing, and would require less of it for the same effect. It would involve surgery to implant the pump, but after that I think it is very easy to take care of.
Anyway, I worry that my spasticity is getting worse. If it has, it is subtle, but I do worry it has gotten worse.
I so hope that this transplant works for me. I really want to be a success story, not just for me, but to give hope to other MS patients. Like I said, I don't think there's been any progression since the transplant, which is great, but the negative part of me says maybe that's just because for 2 or 3 months of the 6, I didn't have an immune system at all! So if the MS has come back, it would really have only had 2 or 3 months to start doing anything.
Ugh. You can see how this can make me crazy.
Last Friday I went upstairs to watch a movie with the boys, and ended up falling asleep up there. The upstairs is carpeted. When I woke up to use the bathroom, I totally could not walk on the carpet at all. It was dark and I couldn't see well, and the bed isn't near a wall, so I was trying to walk with nothing to balance with. I tried a couple of times, but was just too unsteady. So I had to get down on the floor and crawl (I didn't have my cane or crutches up there). That was a really bad feeling. But then again, I rarely ever try to walk on carpet, so I can't tell if this is significantly worse than before, or not. Anyway, I had a hard time falling back asleep because I got really worried and scared.
So I am feeling pretty scared. On the one hand, my sister reminded me that I have NEVER had good news at any neurology appointment, ever (except for the one where they told me I was bad enough off that I qualified for the clinical study, which is sort of a mixed bag). So I could just be feeling really scared because I have only negative associations with these kinds of evaluations. That may be. But on the other hand I worry that my fear and anxiety is my subconsciousness trying to prepare me for bad news.
In any case, it is what it is. Worrying won't change anything. If my MS returns, so be it. There are worse things in the world. But still, it will really, really stink.
I'm so grateful to have had the chance to be a part of this clinical study. But the worrying and wondering and waiting for the other shoe to drop is pretty obnoxious, I have to say.

Catching up part 2: Mosey's birthday!

Mosey's birthday celebration actually started the Monday before, when he was recognized at his preschool. Every Monday they have "Chapel" where all the preschool kids, age 2-5, come and sing songs, hear a bible story, and celebrate birthdays. Here he is with his friend, Jack, who has a birthday the exact same day!

I also discovered that the party I had planned for Mosey, and had sent invitations to school for on that very day, was scheduled for the exact same time as Jack's party. He also had sent invitations to school. Oops!
So I called his mom and basically invited ourselves to have a joint birthday party for the two of them at her house. How tacky am I?
But it turned out fun. Mosey had wanted to have a "stuffed animal party," and Jack was having a "wild west party." So we told all the kids to bring a stuffed animal, and get ready for a wild west time!
The day before the party was perfect. 75 degrees, sunny, just beautiful. Of course that night, a cold front blew in, and the next morning it was cold! It was probably in the 50s during the party. Chilly! But at least it wasn't raining, since the activities were all outside.
Jack's mom used to be a party planner, and she did a really good job. The decorations were adorable and she had fun games. At the end of the party, just before cake and presents, we played a stuffed animal game. All the kids put their stuffed animal in a pile and then we blindfolded the kids one by one and they had to find their own stuffed animal in the pile.


Here's the new 5-year-old!


I know I'm biased, but I sure think he's cute.



Mosey requested a "cat cake," so here it is! Thanks to my sister-in-law Christine for decorating tips. It was strawberry cake with a strawberry jam filling and buttercream frosting.



When Jack's mom asked Mosey what piece he wanted, he said, "The head!" So he got the whole head. Nope, he didn't manage to eat it *all,* but he gave it his best shot.



Jack's mom made these adorable signs hot-gluing narrow rope on foam board. It must have taken her forever.


She had a bale of hay and saddle for the kids to "ride."



Here's Mosey in front of the rope signs.


Lassoing a deer head (not real).


Mosey riding on the hay-bale horse. There was also a "panning for gold" station where the kids searched for chocolate coins in a galvanized tub of sand, a shooting gallery where they threw beanie babies to hit tin cans, plus a trampoline and swingset in the backyard. She had tons of cute and clever details, like this over the table with drinks:

Anyway, it was really fun. We were in charge of "loot bags," and gave candy, playdough, and a Target dollar-spot stuffed animal.


Here I am with Jack's mom.
We stayed to help clean up, but honestly that was the least effort I've ever put into a party for my kids. Yep, it pays to have a joint party with a party-planner!


When we got home, it was present time from Mosey's brothers and parents.



His brothers got him movies-- Wall-E and Cats and Dogs. He was *thrilled* about Wall-E.



Love his expressions. That's the kind of reaction you want when you give a present!



He also got a scooter! Joseph and Brigham each got one for Christmas, I didn't think Mosey was old enough. But he was doing pretty well on his brothers' scooters and really wanted one for himself. He's done great on it!
He also got a Target gift card from grandma and a stuffed animal dog of his very own to be friends with the one he gave Ben for his birthday.


That night we rounded off the day with a trip to CiCi's pizza buffet, one of Mosey's favorite places.

So my boy is now a big five-year-old! Hard to believe.

Catching up part 1: Ben's birthday

I finally finished going through a bunch of pictures last night, and figured I needed a good clearance post documenting all the important things from the past three weeks.
First up: Ben's birthday!


Ben wanted to dress up and go to a nice restaurant downtown for his birthday. It was a beautiful day, so we ate outside.


My handsome Brigham, looking like a business man, examining the menu. He got macaroni and cheese, and it really was the best macaroni and cheese I ever tasted.


Joseph did NOT want his picture taken (surprise, surprise).



Mosey enjoying his chicken strips. We were sitting under a red umbrella and the light was all weird, hence the black and white pictures.

We ate at the Four Seasons Hotel restaurant, I think called Trio or something. It was fancy. I ordered Scallops with some fancy sounding salad topped with watercress. It was very pretty when it came, and I wish I had taken a picture of it, because its appearance was the only thing that was good.
I must be totally uncultured, because I thought it was *horrible.* Whatever the salad was, it was the most disgusting thing I've eaten. It had the worst, sort of scorched flavor. The scallops tasted *ok,* but were really slimy. I am honestly one of the least picky people I know. I like almost anything. I was shocked that I didn't like it. And of course, this was the kind of restaurant where you pay for everything. Ben paid $3.50 for a sprite. You'd think it would include refills, right? You would be wrong. He got a 10 oz. glass bottle of sprite and a glass of ice. I guess free refills are just a little too low-class.
Anyway, I am now more convinced than ever that I'm very happy here in my middle-class lifestyle. Give me Carinos or Cheesecake Factory any day over some hoity-toity fancy restaurant!
It was fun to get all dressed up, though, and try to teach the boys some good manners. And they were well-behaved. At least the children's menu was good. Ben got some sort of smoked salmon salad, which he said he liked, so that's good.


On the way home, we actually did stop at Cheesecake Factory and bought a mini-cheesecake to take home. Ben's favorite, Raspberry white chocolate truffle.
The boys gave them presents, which they picked out entirely on their own. Brigham gave Ben a half-gallon of egg nog. Joseph gave him the game Battleship. And Mosey gave him his own little stuffed-animal dog. Mosey immediately told Ben, "If you don't have time to take care of him, I'll take care of him for you!"
We also finally did order the wheat grinder which he's been using the past couple of weeks.

Happy 34th, Ben!

Beaten by a 7-year-old

Brigham got a chess set for Christmas. Or, as he calls it, a "chest" set. Old habits die hard, and he still calls it "chest." It is cute.
I've started a few games with him, but we never have time to finish.
So tonight we went to Carinos for dinner (Monday night "family night" special) and brought along the chess set.
Brigham is good! Or maybe I just stink.
But he very nearly beat me, and as it was, it ended with a draw. We both managed to kill off ALL of the other's players, so it ended up King against King, which I think is a draw in chess.
I have to say, it made me so proud to have my boys humiliate me like that!

Oh, the frail male ego

Predictably, one of the most frustrating aspects of my MS has been the necessary increasing dependence on other people for things I used to do happily, and with ease, myself. Particularly hard is having to turn various household tasks over to Ben.
I like to think that we work well together, but the truth of it is that both of us are slightly controlling, and we really *don't* work that well together. I think we do a great job, mostly, of dividing and conquering the things that need to get done. But when our realms of control begin to overlap, frustration ensues.
Take this weekend, for example. I designated Saturday as a "fix-it day" around the house. There have been a few things breaking recently that needed to get fixed. These kinds of things are easy to put off, and before you know it, the house is falling apart. Anyway, we needed to fix the upstairs bathroom cabinet door which had fallen off, replace a door knob, replace the wall shelf that Mosey pulled out of the wall when he tried to climb the shelves to get at a stuffed animal, fix the kitchen cabinet door that Brigham broke, replace a piece of floor trim in the master bedroom, and fix the rope swing in the backyard. I think that was all that was on our list.
I like to think I am meticulous when doing home fix-it stuff. Attention to detail and taking the time to do it right are really important, I think. Ben, on the other hand, is *not* a detail person. Just fix it fast and move on to more enjoyable things is typically his approach. Of course, he does not enjoy home-improvement stuff at all, and I do, which might account for our different approaches.
Well, he very adeptly replaced the upstairs bathroom cabinet door, and then moved on to the shelf in the upstairs TV room. These were shelves that I had installed by placing dry-wall anchors in the wall, and then mounting the shelves on brackets. Pretty sturdy, but not sturdy enough to withstand the weight of a set of encyclopedias *and* a 5 year old boy. Anyway, I've installed several shelves like this, and know exactly how to do the drywall anchors and feel pretty confident that I can do it right. Ben took a look and decided that he could just put "a bunch of superglue" (his words) on the outside of the anchor and then stick it back in the hole in the wall, and then just put the shelf back on.
I try to be very respectful of Ben's ideas, I truly, truly do. Really! But the male ego is exceedingly fragile. I told him I thought that might work, but I'd really like to go upstairs and take a look just so I could be confident in that plan. I was working on some Relief Society stuff at the moment and needed only 5 more minutes to finish up before I could go upstairs and look at it. "Well, if it's going to be five minutes, just forget it!" Ben was obviously extremely offended that I would express even the hint of doubt about his plan. He's usually happy to help me get up the stairs if ever I need to, but in this case it "wasn't worth his time" to help me get up the stairs. He was obviously mad.
Ugh.
I really don't know what to do in these situations. I did manage to drag myself up the stairs and saw immediately that the superglue plan would not work. There were big holes where the drywall anchors had been ripped out. Superglue, which can admittedly solve a variety of problems, was not going to cut it. We either needed to drill new holes and put in new anchors, or go to Lowes and get some toggle bolts.
Ben was just plain offended! I don't understand it! I have LOTS of experience in all sorts of home-repair stuff. He has almost none. It's no shame for him to not know that supergluing drywall anchors back into ripped out holes wasn't going to work. Why is it so embarrassing to concede that someone else might actually know better? If I was trying to do something on the computer and he told me that it probably wasn't the best way, that he knew a better and faster way, I would *not* be offended. I would be grateful for the expertise. It's just got to be a male ego sort of thing.
Well, he pouted the rest of the day. Seriously, the rest of the day.
Today, after church, he asked if I wanted him to make lunch. I told him I was happy to make it, if he could help me. He wanted to "make some ramen noodles and throw in a bunch of stuff." I asked him what kind of stuff he wanted to throw in? This question was very offensive and he got all huffy and said, ok, fine, just make whatever you want. Argh! I don't *need* to have my way in this, I just wanted to know what stuff he wanted to "throw in!" I had the ingredients to make tuna pasta, which the boys like, so I suggested that. "I don't like tuna pasta, just do you know." Ok, fine. He was still willing to help me make it. Or so he said. I asked him to put some water on to boil. He got out our HUGEST pot. This is like a canning pot, it is huge. I said, "We have a smaller pot, the water will take forever to boil in that." So he puts it back and gets out our SMALLEST sauce pan. Ugh. Is he doing this on purpose? So I said, "Why don't you use the medium green pot?" He shoves the small sauce pan back in the cupboard and says, "See, whenever I try to help you, I can never do anything right!" And he was done. So I made it myself. Which is ok, but it is really hard for me to stand for that long, and it would have been so much easier and faster and smoother if he would have just helped me.
I just needed a helper. Sometimes two in the kitchen *is* too many. All I wanted was for him to help me. I wasn't trying to be controlling. Is it controlling of me to tell him the kind of pot he should use? Maybe it is. I thought I was being very nice and calm, but maybe I wasn't. Maybe he's as frustrated as I am about my situation, and it comes out as very low tolerance for anything resembling "bossing."
But seriously, this is why Eve was the "help meet" for Adam, and not the other way round. Men just can't do it.

Just heard

Me: "Joseph, you need to eat some lunch before we go to Extreme Fun."
Joseph: "Ok, mom, in a minute. I just need to take over the world first."

My boy? Yep, he aims high.

Things I've learned

Here are some of the things I've learned in the past few days:

1. When your boys lock the dog in the bedroom upstairs, he will scratch up the door and door frame and tear a hole in the carpet trying to get out.

2. When a certain kitchen cabinet door gets sat on and swung on often enough, it will break off. And not just the hinges. The whole left side of the wood will split.

3. When the playroom door gets slammed hard enough and often enough, the entire doorknob will break.

4. When mom goes to rescue the boys who are trapped in the room with the broken doorknob, one of the boys will close the broken door behind her, trapping everyone in.

5. Five year old boys are not mature enough to handle losing a game of Scooby Doo Haunted House. Tears and howling will ensue.

6. Five year old boys *are* old enough to earn 5 minute time outs in a dark closet after breaking an older brother's sword in his anger over the Scooby Doo game.

7. Certain 7 year old boys, whose names start with J also aren't quite mature enough for the Scooby Doo game.

8. Don't buy the 3D Scooby Doo Haunted House game. It's just not worth it.

My baby

Today my baby is five!

Five years ago right this minute, I was asleep, under sedation after an emergency caesarean section. I had an epidural already in place, but when they rushed me in for surgery (Mosey was descending with his head cocked to the side, ear presenting first, which is very unsafe), and made the first incision, I discovered that it hadn't fully numbed my right side. Ouch! So I was given something or other in my IV, and I barely made it conscious through the delivery.
As it was, I got to see him only for a second because he was rushed to the NICU for breathing problems.
As I slowly came out of the anesthesia, I had some sort of panic attack and started hyperventilating. I was terrified, because it really felt like I was not getting enough oxygen. I couldn't catch my breath long enough to call for a nurse. Finally one passed by and I gasped out that I couldn't breathe. She checked my oxygen saturation, and it was fine, and she told me just to slow my breathing. Yeah, right! How do you slow your breathing when you feel like you are smothering?! Finally, they sedated me again and I didn't wake up until the next morning.
Mosey spent the night under an oxygen tent and was doing a lot better by morning.

But he was still breathing really fast and the doctors were not comfortable letting him out of the NICU. I didn't even get to see him until nearly 12 hours after delivery. And I didn't get to hold him until the next night.


But, after a less-than-promising beginning, he improved and was released from the NICU after 5 days and came home with me.

He was an easy, easy baby. (Well, maybe any baby would have seemed easy after twins!)
He didn't cry much, slept very contendedly in the sling or the swing, and seemed to adapt to life this side of the womb very well.


The twins were not happy about him for several weeks, but finally managed to accept his existence, and finally to even love him.

(look at the scratches on his face-- Brigham and Joseph did that to him! So sad... But they were only two and it was a tough adjustment)

Mosey is still my sweetie, maybe because he is the youngest. But he is by far my most cuddly child, and always has been. He will grab my face and kiss my cheek. He still manages to find his way into my bed to snuggle with me more nights than not.

He is a funny kid, too! He has an infectious laugh, and it's not just me that says this. He finds little things uproariously funny, and you can't help but laugh with him.

He loves animals. And he LOVES stuffed animals. Here are the stuffed animals currently on his favorite list:
Little Dog (the first, and best-loved of his Webkinz animals, a chihuahua)
Lumpy (Webkinz elephant)
Good Squirrely (Webkinz squirrel)
Pug (Webkinz pug, oddly enough)
Rudolph (fawn)
Polly (pink and white dog with pink bows on her ears)
Giant Polly (same as above, but bigger! She's little Polly's mom, apparently)
Scooby Doo
Fur-Real dog (no name)
Fur-Real cat (no name)
Golden (dog given to him for Christmas from Brigham)
Attack (cat)
Sunshine Bear (Carebear, actually the "Funshine" bear)
Blue (from Blue's Clues)
White doggy (no name, he actually gave it to Ben for his birthday, but has since sort of adopted it as his own, to no one's surprise)


Mosey also loves to read. He's a really good reader! He's reading the Charlie Bones books along with Joseph. He reads out loud sometimes and it's the most adorable thing to hear. He has great inflection for dialogue, and reads with spirit. He was reading this afternoon and only got caught up on the word "indignantly." That is a hard word! He's a great speller, too, and frequently corrects Brigham on his spelling (admittedly, spelling isn't Brigham's greatest talent).


He's still afraid of the dark, and won't go into the garage by himself, or even into the bathroom if the light is off. He'll ask one of his brothers to turn the light on for him first.

He is TERRIFIED of the automatic flushing toilets at Walmart. Absolutely terrified.
Along those lines, he sometimes prefers the backyard to the toilet, much to my chagrin. But sometimes his brothers don't want to stop what they're doing to turn the bathroom light on for him, and what's a boy to do? :-)

His favorite food is fruit, smarties, and any kind of soda. He tells me all the time, "Mom, I'm hungry for a smartie!"


He loves to play on Webkinz World and Starfall.com, and he is scarily adept at anything to do with the computer. Like, he can open up Blogger, create a new post, and publish it completely on his own. He can find the Republican National Trust and fill out the contribution form to donate 79 trillion dollars. Go to the Starfall.com store and try to buy $220,000+ worth of stuff. And he can dance like nobody's business.

He loves to sit on my lap when shopping at Target or Walmart or HEB (the only places I can shop, as they have the ride-on carts). I love to kiss the top of his head while he's riding on my lap.

He says to me, "I'll hold your hand, Mom, so you don't fall." Sometimes he wants me to go upstairs and I tell him it's too hard for me, and he will say, "Don't worry, mom, I'll hold your hand so you can get up the stairs."

He always prefaces a statement to Ben or me, "Mom (or Dad), I hafta tell you something." And then we have to respond before he will actually say what he has to say. At night as I'm trying to settle him down, he'll say, "Ok, mom, this is the LAST thing I'm going to say." Until the next thing, and then *that* is the last thing.

He adores his big brothers and does everything with them. First thing in the morning, he asks me if Brigham and Joseph are up yet.

I love him so much, my heart just bursts with love for him.

Happy Birthday punkin' pie!

Bad, bad blogger

I've been so bad updating my blog as of late. I have the problem in that I don't like to go out of order. I have not yet blogged about Ben's birthday last Saturday, because I have not yet had time to upload and edit the pictures. Therefore I cannot blog about anything else until that is done! Or so my methodical logic tells me.
And I will blog about Ben's birthday (he's 34!), hopefully tomorrow before Mosey's birthday on Saturday (he'll be 5!).
Today I went to Houston for my 6 month visit with my oncologist, Dr. Popat, at MD Anderson.
It was fine. They took blood, he listened to my heart and lungs, asked if I felt well (yes), if I had any questions (no), how I felt about how I'm doing in the study (don't really know, I guess pretty good), went back and drew more blood (oops, they forgot a couple tests), and that was that.
Well, then he sent me at the last minute to Baylor to see my neurologist, Dr. Hutton.
I really, really like Dr. Hutton. His office hasn't been the most on-the-ball, I'm not sure why. Dr. Hutton said they're going through some personnel restructuring, and he seemed genuinely upset that my phone calls and messages over the past few weeks were not answered. So upset, in fact, that he gave me his cell phone and email address! What doctor does that, I ask you?! He must trust me not to forward him all the latest miracle cures for MS that come my way. :-)
Anyway, when I was with Dr. Popat, he asked when I was seeing Dr. Hutton, and I told him I hadn't been able to schedule a visit yet, so Dr. Popat called Dr. Hutton himself, and voila! An appointment was made for right then! ( I actually kind of felt important!)
I didn't really want to go, since I knew that this neuro appointment was supposed to involve the full EDSS scoring (walking tests, math test-- yes, really, peg test, etc.) and I had already been walking all over creation (it felt like) at MD Anderson and I was hot and tired. Plus I forgot my Baclofen this morning and was a spastic mess. Plus I only got 4 hours of sleep last night (had to leave for Houston at 5:30 AM and had to get all the boys' stuff ready for the day, blah, blah, blah).
Plus, I had timed everything so that if we returned to Austin right after my MD Anderson appointments, I'd get back in time to take the boys to piano lessons. But an appointment with Dr. Hutton messed with all that. I was very frustrated because I knew I wasn't in any shape to do the EDSS scoring, and he'd want me to come back later anyway, so a visit with him was just going to be a waste of his and my time. So I called his office and tried to communicate this with the person at the front desk, to no avail. So I went. And it was probably good, since I left with his cell and email, the cell and email of my new nurse contact there, and the assurance that my MRI and neuro appointment will be made post haste. Actually, they had tentatively scheduled an MRI for this very night at 10:00! It didn't work out for me to stay for it, but I was very impressed by how quickly they made that happen. I'm not sure I ever wrote about the long and involved and very, very frustrating saga of getting my pre-transplant MRI's scheduled last spring. It literally took 3 months. Although I think 2 months and 29 days of that was time wasted by an incompetent, although very nice person who shall remain nameless and who no longer works at Dr. Hutton's office, and 1 day to actually schedule the MRI.
Next week I'll probably go back to Houston for the full neuro visit and MRI's. It's actually making me a little sick to my stomach. I've been fairly successful in keeping myself really busy and preoccupied and not thinking too much about my MS stuff. But the MRI will be big. If there are new lesions, that is NOT a good thing. Really, really not.
I don't think I've really seen any deterioration since I came home from the hospital, but I also don't feel like I've recovered as much mobility as I had before the transplant, so I don't know what to make of that. Maybe there was some trauma that happened during that one really bad flare at the hospital when I reacted to the ATG. Who knows. Maybe nothing.
I just feel like skipping the MRI and continuing on in ignorant bliss. But then again, if there has been no change on the MRI, that will be incredibly encouraging. So I'm very, very torn.
I'm afraid I'm going to be a mental case for the next week or so. Maybe it's time to break out the Xanax? (kidding)
Anyway, I'm back from Houston for now, had a safe and very enjoyable trip driving out with my friend Sue (who volunteered last night at about 9:30 PM to come pick me up at 5:30 AM and spend her entire day driving me to and from Houston. Major, major brownie points), and now have the cell number and email address of an actual, real-life doctor (insert evil laughter and hand rubbing here).

The boys' first car wreck

Well, it wasn't much of a car wreck, really, thank goodness.
We were on our way home from church, stopped at a stop light and got rear ended. It was quite a forceful jolt, actually. It shocked all of us, and then Mosey started crying and told me it hurt. I think he was more scared than hurt, because he hasn't complained for the rest of the afternoon.
It was a 17 year old kid, and he was very polite and obviously scared. I felt really bad for him. That first fender-bender is pretty awful.
Luckily the height of his fender and ours was such that very little damage was done to his car, and the bottom part of our bumper only was dented in. He was very lucky, because, honestly, after the jolt we felt, I fully expected to see his hood buckled at least somewhat. I hope our bumper isn't too expensive; it always annoys me when bumpers are expensive to repair. Isn't the POINT of bumpers to protect the body of the car?
It was good, in a way, to drive home the importance of seatbelts.
Mosey said, after we were back on the road, "I'm never going to drive when I am a teenager. I'm only going to practice and practice." And that is just fine with me.

Happy 2009!!!!!

Remember our cute little gingerbread house?



Well, after some of this...



A little of this...



A lot of this...



Some more of this...



And of course a little doggy action...



We ended up with this.




And this. Three very happy boys and a whole lotta crumbs.





They got creative this year and had a whole scenario in which a massive multi-car pileup demolished the house leaving nothing but rubble.

All-in-all, a very successful Gingerbread-Demolition-2008!

I am not sad to see 2008 move into the history books. In many ways it was a really great year. I got into the stem-cell transplant clinical trial, survived the transplant, and my blood counts are almost all normal. The boys started homeschooling, a dream I've always had. Ben has a good job, and we are financially secure and comfortable. We are truly blessed.

But I also never want to have another year like 2008 again. I know I could survive it, in case we're ever faced with similar challenges, but I would sure rather not!

I am hoping for a much less eventful 2009!!!

It's pretty weird to me that it is now 2009. I remember well when 1989 seemed like such a futuristic year. And 1999 seems like such a short time ago. In 2019 I'll be 42, have two 17 year olds and an almost 15 year old. It seems like a lifetime away, and yet I know it will be here sooner than I will believe possible.

The acceleration of time as I grow older has really surprised me. It is certainly bittersweet. I relish in my children growing older and learning and becoming such fascinating little people. But I miss their littleness especially now as I see how fleeting it is. On the other hand, I also have seen that life grows sweeter with each passing year, and I would be lying if I didn't say that I do look forward anxiously to that day when I will once again be whole.

Anyway, enough reminiscing.

Last night we had our annual demolition of the gingerbread house. It was as fun and messy as it was last year, as you can see from the pictures.

We then went to a get-together at my friend Stephanie's house and enjoyed good food and adult conversation while the kids ran wild. Finally at around 10:30 Mosey came to us begging to go home. Poor kid, he was soooo tired. Joseph and Brigham were still rarin' to go, and watched Harry Potter upstairs after we got home. Last time Ben checked in on them, Joseph was still up at 1:15 AM. Wowee. Mosey conked out very quickly, although he was up again by 8:30 this morning and was consequently a little grumpy all day.

Today we packed up our Christmas stuff (I'm always sad to see it go, but happy to reduce the clutter), and then we cleaned out our garage! Actually, Ben cleaned it out and I sat and watched and directed. I wonder if there is anything I love more than getting a messy area nice and clean and organized? I love it. What a fabulous way to start out the new year!

The kids are all nestled all snug in their beds and Ben is staying home from work again tomorrow, so all is well in the Turner household.

Christmas 2008

Well, I suppose I ought to post my Christmas report/pictures before I write about New Years. In the interest of time, and at the expense of originality, I'm just copying the email I sent my family about our Christmas.

Here is my 2008 Christmas report.

We had a fun little Christmas here in Austin. The week before, I made cookies every day and in the evenings the boys went on "secret agent missions" and dropped them off to various people.

The week of Christmas I started making bread wreaths (like the ones you make, mama), and ended up with 12 we wanted to deliver to friends on Christmas Eve. I'm not sure I'm ever going to be able to convince my family of the fun and value of caroling, but the boys had a really fun time delivering the bread. They rang the doorbell, ran and hid, and when the person came to the door, they jumped out yelling "Merry Christmas!" (Or in Mosey's case, "Boo!!!"). And we were lucky, every single person was there when we delivered bread to them!

After delivering bread, we went to HEB (grocery store) to shop for our shepherd's dinner. [This is a tradition carried over from my childhood. Every Christmas night, instead of a big traditional Christmas feast, we have a "Shepherd's dinner" in which we eat foods we imagine the shepherds might have eaten on the night Jesus was born. As a kid, we'd shop at Trader Joes, but sadly there is no Trader Joes here in Austin, although I can't imagine why. Austin is SUCH a Trader Joes kind of place. Anyway, the meal usually consists of nuts, dried fruit, various kinds of cheese, flat bread, hummus, special kinds of fruit juice, and, to keep the adult males in the household happy, roast chicken. We eat it on blankets in front of the fireplace with all the lights off in the house besides Christmas tree lights and/or candles. It's delicious, easy to prepare, easy to clean up, and really brings the spirit of Christmas back into the house after the day's festivities. It is one of my most favorite Christmas traditions.]

Once home, we got to work decorating a gingerbread house (from a kit, no time or patience to do the real thing), and the boys, who had their choice of dinner menu for the night, chose Ramen noodles. I did let them get special flavors at HEB, to celebrate the occasion.

We then had a sort of dance party with Ben dancing with the boys to very loud Christmas music (Harry Connick Jr.'s "Wooden Soldiers on Parade," the Polar Express train song, and others).

Once the boys were thoroughly riled up, we did a Christmas program in which Joseph and Brigham each played their Christmas songs they learned, and accompanied the rest of us singing. It was very fun, and my heart was warmed when Joseph wanted Brigham to play "Silent Night" several times so we could sing all the verses. This from the kid who refused to go up with the primary kids on Sunday to sing their primary Christmas songs because he "doesn't like to sing." I don't know what his deal was. But it about made me cry to have him request that we sing all the verses.

Then we read the Christmas story from the Bible, and it was bed time! Ben and I were up very late wrapping presents. We don't leave any out unwrapped, because the way our house is arranged, the boys can see straight into the living room from the upstairs balcony. I loved talking with Abraham and hearing everyone else's voices. [Conference call with my family, speaking with my younger brother on a mission in Switzerland.] And actually I really enjoyed the late night present-wrapping with Ben. We don't get a whole lot of child-free time together.

Christmas morning Joseph was the first one up, but very obediently played Civilization on the computer until his brothers woke up, not until 9:00!!!! Bless you, children! Then it was present opening. We had them take turns opening presents from Ben and I, then had breakfast, then had them open presents from each other.

Another heartwarming moment for me was seeing Joseph's excitement over watching other people unwrap the presents he had purchased. We had the boys each buy a present for one other boy, plus one for mom and dad (Ben and I took them out separately). Well, Joseph was not imbued with the spirit of giving. When I told them I wanted them to each spend about $5 of their own money for a present for their brother, Joseph said, "I'm only going to spend $2! I don't want to spend all my money." I told him he was on thin ice and that I would be more than happy to take back the presents I bought him. Over the several days before Christmas I tried to tell him how exciting it is to see someone else open your present, and that he would be so glad that he took the time (and money) to choose something nice. Then a couple of days before Christmas, when we were shopping for something for Ben, again he tells me he doesn't want to spend his money on presents. So I told him the story of the young man who asked Jesus what he needed to do to enter the Kingdom of God. I wasn't sure if any of it sunk in and I was pretty depressed at how I'd let my little boy become so greedy.

But Christmas morning, BEFORE he opened any of his presents, he grabbed the present he bought for me, and was just beside himself with excitement for me to open it. I'm telling you, that was better than any gift he could have bought me. Anyway, what he bought was pretty darn sweet, too. Target has these candy bins in which they sell Sunkist fruit gems. It's the only place I've ever seen them. I bought some for the boys some time ago, and told them it was my favorite candy. Well, Joseph remembered that, and he bought me a bag of Sunkist fruit gems. Can you say, "Awwwwww?"

He was also very excited to see Brigham open his present, which was a slinky. Brigham had bought himself a slinky at the Target Dollar spot several weeks ago, and then immediately (accidentally) stretched it too far and ruined it. So Joseph, my little Grinch, ended up being a very thoughtful gift giver, and I think he now has a little testimony, at least, of gift-giving. (I had also ordered Brigham a slinky, but happily it hadn't arrived yet, so I didn't spoil Brigham's surprise and Joseph's excitement).

Brigham gave me a Christmas mug (and you bet it was the BEST Christmas mug I ever got), and gave Mosey a stuffed animal, one that Mosey had been admiring at HEB for a few weeks. Mosey LOVES it, and has been carrying it around ever since. Mosey gave me a green spiral notebook, which he was very sure I needed (and I DID!), and gave Joseph a Scooby Doo movie (which was immediately watched upstairs while I gratefully napped for a few minutes).

The boys bought Ben some little shelves to organize his bookshelf in our room, and they each bought him a bag of flour (Ben has been making lots of whole wheat bread recently, isn't that amazing?). They really wanted to buy him a wheat grinder, since he's been using our hand grinder to make the flour (he's trying to figure out how to use our food supply), but I didn't have time to properly research and order what I wanted. Yesterday I finally ordered one for his birthday on Saturday. We've been debating the relative merits of a mixer versus a wheat grinder. I voted for a mixer, but he would rather have a grinder. And he does usually only make one loaf at a time, which isn't too hard without a mixer. Of course, last week he was trying to make loaves of bread for the people who work for him, and as he was strenuously kneading the dough he said, "Oh, I can see now why people want a mixer!"

The other big hits were:

Scooters for Brigham and Joseph (Joseph's been riding his non-stop)

Webkinz animals for Mosey

Where in the World is Carmen Sandiego computer game for all of them (remember that game?)

King Arthur castle lego set for Joseph with accompanying knights for all the boys

Balloons for Brigham (he has been asking for balloons for forever, and Santa put a bag of them in his stocking. Who knew that a $1 bag of balloons would end up being his FAVORITE?)

A Microscope from Grandma Frandsen!! (I love this as much as the boys do)

A Wacom tablet for mom (a pen and tablet that works sort of like a mouse, and is very useful for photoshop stuff)

New clothes for Ben and an FM transmitter so he can listen to his MP3 player in the car

And... new couches! We've never bought new couches before, we've only ever gotten them from family members, Craigslist, or Salvation Army, so this was big for us. We got them at Biglots, because the price was definitely right. I hope they hold up, but we just didn't want to spend too much while the boys are still little and hard on furniture.

We got other things too, but those were the big ones. I actually felt pretty good about the number of presents we got, which was nice. (I usually feel like we get too many.)

We had our Shepherd's dinner in the evening and then all collapsed into bed. Or at least I did.

Ben took the day off on Friday, too, and we had another day of playing with new toys and attempting to clean up some of the gigantic mess that Christmas always makes.

So, that was it! The house is now cleaned up, new toys put away, and the boys are enjoying some time off from lessons for a few days. I'll probably start up with some lessons tomorrow, but kind of lead into it gradually.

Joseph on his scooter. He's gotten really good over the past week.

Brigham working on a map of the United States puzzle.

Playing knights on the living room floor.

Mosey and his new stuffed animal Golden (from Brigham) hanging out with Dad

On the day after Christmas, Ben was working on winterizing the pool, and Brigham decided to get in, too! It was pretty cold, but he stayed in for a few minutes.

I really love not living in a cold place.

Ben thought ahead and put on his wet suit. A little more comfy.

Joseph didn't want to swim, but sat on the tramp and watched.

Mosey got in for a very short while but decided it was just tooooo cold!