Not much new to report

Things have returned to normal around the Loy house. But, of course, things are changing, as well.

I started picking up extra hours at the imaging center. It's been good so far. They're training me on the DEXA (bone density) machine and I'm going to be working my first Saturday this weekend by myself. The UAA students also started up their spring semester, and that always adds a challenge to my days.

Todd and I are changing Mason's preschool/daycare situation. It was a LOOOOOONNNG and very hard decision to make, but I (we) really feel like it will be the best for everyone, especially Mason. He has two more weeks left at JEC and then he'll start at the Providence daycare in their preschool room. Hopefully sometime soon we'll get a chance to take Mason by there to see it and meet his new teachers so it won't be such a huge shock on his first day.

I'm going on almost 7 weeks without any MS meds. I'm not sure if things seem like they're worse because I know that or not, but hopefully everything will calm down either way. I did go by my neurologist's office today to fill out the Copaxone paperwork. Dr. Burt (Chicago study doctor) wants me to at least be on this while we wait for my insurance to respond and the Tysabri to fully get out of my system. I'm not looking forward to doing shots every day again, but hopefully it won't be for too long.

Today was 15 degrees above zero, which felt so warm after what felt like forever of 15 degrees below.

Like I said, not much new to report.

The Best of Intentions...really

I really do mean to update this blog more than I actually do. I really mean that. But, like with most things, it gets pushed aside. The problem with putting off posting things, is that by the time I get around to posting them, well, it isn't really current information anymore.

For instance, Todd and I went to the opening night of the Anchorage Symphony...OVER A MONTH AGO! I have been meaning to go on and on about how incredible it was. That it was probably the most enjoyable ASO event we've been to in a really long time. That the pianist was breathtakingly amazing. Oh, and of course, that Randy's hair was shiny and beautiful as always.

We also took a quick weekend trip up to the cabin, also about a month ago. It was mainly to get things cleaned up and ready for the winter. We don't heat the cabin, so we have to bring back anything in the refrigerator or cupboards that will freeze and/or explode. I also changed the sheets and made sure there was a good stack of wood inside that would be nice and dry for whoever heads up there first this winter. Mason had a good time, and enjoyed playing outside even though it was definitely a lot colder than it had been on previous visits. I'm hoping we'll make it up this winter, but it's hard with a little guy. It gets so cold someone almost has to go up the night before to get the fire going and get the cabin comfortable. We'll see.

Todd and I both celebrated birthdays. Todd on 9/30, me on 10/8. We kept it pretty low key, which was fine. Next up is Mason's birthday...I can't believe I'll have a 3 year old!

This weekend Todd and I are heading down to Homer for a few days. We both realized we haven't been anywhere together, without Mason, in a REALLY long time. It will be nice to just relax and reconnect.

I promise to post picture to catch you all up, as well.

Firefighter Loy

Firefighter MASON Loy, that is. Like father, like son, right? This firefighter costume is still way too big for him, but we got it out today and he had so much fun playing with it. I am constantly amazed by his imagination when we are playing. It is so much fun!!

Ready to go!

Off to drive the "fire engine"

Driving to the fire

The saying on the wall is so, so true

Helping get his monkey ready for the fire, too

My handsome boy.

The rest of the story

So here’s the long story of my awful day yesterday. I started out heading to Rush University Medical Center for my appointment with the neurologist. He is the one who doesn’t know which group patients are in and just does the disability score. When I started the trial a year ago, I was at 2.5, then in December I was at 4. In order for me to be able to cross over into the treatment group, my EDSS needs to be at least one point higher than I started. 

Going into this I knew that the EDSS isn’t a perfect system, but they have to have some way of measuring and rating each patient. The biggest frustration for me is the doctor who performs the EDSS rushes through the entire thing, and doesn’t seem to pay much attention to what you’re telling him. For example, as he’s going through checking boxes, he says “You don’t have _____” and moves on. Well, no, actually I DO have that. Anyway, it’s a super frustrating experience. And to make it even worse he gave me a 3. 

I left his office in tears and called Todd from the sidewalk outside the hospital. I just really didn’t want to keep doing this at that point. I managed to get myself together by the time I got back to Northwestern Memorial Hospital for my appointment with the study physician. Since I had time, I picked up a copy of my MRI (it is actually pretty stable...more on that later). 

Now for the super embarrassing part. As soon as Dr. Burt (the study doctor) walked in the exam room, I burst into tears again. Even as I write this I’m getting teary-eyed. Ugh. It’s like I broke a valve or something and now I can’t stop! Ok, back to my appointment. He understood my feelings (or at least seemed like he did) and the nurse was also extremely sweet and understanding. He even said that this is the reason he has nothing to do with the EDSS or deciding who is or isn’t in the study...he believes in what he does so much he wouldn’t be able to say no to people. I can’t imagine having his job. Knowing you can CURE something, but not have the ability to do it to everyone. 

The worst part of my number, especially since it was SO CLOSE, is that I feel EXACTLY the same as I did in December! By this logic, the damn number should be the same! I guess this is where the human factor comes in. Nothing’s perfect. Blah blah. I guess I would feel better about the fact that my MRI was still stable if I felt better. What’s the point of having no new or active lesions if I still stumble when I’m tired or get cramping pains in my leg or cant’ feel my hands at work half the time. It’s also bad when Dr. Burt asks me to walk a straight line (heel/toe) and says, “Did he (meaning the EDSS doctor) see you do that?” I know, lord help me if I ever get pulled over! I can hear my mother now telling me to “look at the bright side”, but I’m having an incredibly hard time doing that right now. Maybe I’ll get there, but I’m not there yet. 

 I’m not sure if Dr. Burt just felt bad for the crying idiot or what, but now the plan has changed a little. By the study protocol I shouldn’t have to go back to Chicago for another year now, but he is going to have me come back again in six months. I think he wants to give me another chance if in fact I still feel, or am, worse to get into the treatment part of the study. I’m tempted to lie next time I have my EDSS done. 

So for now I stay on Tysabri and try to get out of this little funk I’ve gotten myself into. Let’s just say, I’ve never been happier to be home and get a hug from Todd and Mason as I am today. 

Tiptoe through the tulips

Helping water Mama's flowers

Sandman

Mason and Daddy finally built the long awaited sandbox in the backyard and Mason couldn't be more thrilled. Todd let him "help" as much as he could. They went to the "wood store" (Lowe's) and the "rock store" (AS&G) together, and Mason was in the yard to "help" dig the hole and build the box itself...and of course he helped fill it with sand!

Now he's in dump truck heaven! As you can see from these pictures, I can't even get him to look away from what he's doing for a quick picture!

Quick break

I'm sitting at Kaladi Brothers by TitleWave. Alone. It's crazy. Actually, I came here to get some work done for the UAA students who will be starting tomorrow, and my time is about up before I have to be home so Todd can go to volleyball. It's kind of a strange deja vu, being at a coffee shop with my laptop and a bunch of papers. It definitely makes me thankful I'm not in school! I can't imagine when I would find time for any homework...I can barely find an hour to get things ready for my job!! I definitely can't complain about having a quick break from being Mama, though.

I do have time for a quick story about Mason...I guess I don't really ever stop being Mama, do I? Anyway, he is really into Play-doh lately. He just loves it. For Christmas he got a new Play-doh toy that is a dog. We were playing with it the other evening and made the puppy mold, which he put into the bed. He then asked for a blanket for the puppy, so I flattened out some Play-doh for a blanket. Next thing I know, Mason is holding the puppy and rubbing his back, singing Twinkle Twinkle to him. It was so cute! I wished I had a video camera ready, but was only able to snap a couple quick pics with my phone.

Feeding the dog 

Rubbing puppy's back and singing Twinkle Twinkle

Close up of the puppy with his blanket on

Yesterday was also a big day in Mason's world. He got his haircut again, which means he gets a lollipop from the lady who does it. Then we went to the pet store to pick up dog food, and came home with a beta. So he has his own fishy now. He's pretty cute with it. He knows he isn't allowed to touch him, or the bowl. "Only eyes" he tells me. We also have to be sure to blow kisses to the fish and tell him night-night. That kid cracks me up!

Happy 2011

Happy new year to everyone. I hope 2011 is full of health, happiness and love for you. New Year's Eve at the Loy house was pretty uneventful. I woke up yesterday without much of a voice, which made for a funny conversation with Mason while we were getting ready for daycare. He told me, "Sound funny mama" so I told him that I lost my voice. He immediately started running into my room, saying "Find it!". Pretty cute, actually. I only wish he really could have found my voice somewhere, it's still missing today.

After Mason got out of daycare we hung out at the house, playing trains on his new train table Todd found on Craigslist, and watched "Hero of the Rails" before Mason took a bath and went to bed. Unfortunately, the downtown fireworks started right around the time Mason was going to sleep. He was able to finally fall asleep but only after asking MANY times "What noise is?".

Todd and I stayed up, but only until about 10pm. I watched the dreamy Anderson Cooper on CNN's New Year's show but that was about all I could handle. As tired as I was, though, there wasn't a whole lot of sleep to be had. This year, the Anchorage Assembly decided to legalize fireworks from 9:30pm until 1:30am. What a horrible idea! If I ever run into Dick Traini again, you better believe he will hear my opinion about him proposing this awful ordinance. There were so many fireworks going off in our neighborhood it seriously sounded like a war zone.

Like I said, a pretty boring New Year by most standards, but for us, it was just right.

Thank you, Santa!

Christmas was an overall success. Being that Mason just turned two, goes to a Jewish daycare, and has fairly non-religious parents, I was amazed that he even knew who Santa was at all...but, of course, he knows. Or at least knows enough to count. The week before Christmas, Todd and I took Mason to see Santa at the Sears Mall (he is apparently the best Santa in town). The whole way there all Mason could talk about was Santa this and Santa that...and of course when we get there Santa is feeding his freaking reindeer. So we walked around the Sears Mall for 20 minutes or so to waste time before Santa came back.

Mason surprised us all. I really thought he would be the typical two year old that is so excited and then bursts into tears the moment he sees Santa. There was a moment of hesitation as we walked up to sit on his lap, but that was soon over and Mason chatted the poor man up like they were old friends. Up til this point, all Mason could talk about has been trains...but ask Santa for a train? No...that would be too simple. He asks for a dump truck.

I know exactly the dump truck he wants, even though he isn't old enough to verbalize it. For his birthday his great-grandparents gave him a Lego Duplo set that has a mixer and a loader with this crane thing...and there is a picture with it of the dump truck that you can buy separately. This is the dump truck of which he speaks...and it is also the dump truck that is no where to be found in Anchorage. So, being the good mother I am, I immediately get online and order it with express shipping.

I just couldn't have his first Christmas asking Santa for something turn out to be a bust. I promised Todd, and myself, that this wouldn't happen every year. But how can I say no to this face?

Christmas Eve Todd had to work, so after I put Mason to bed I set up the stockings. Along with the dump truck, Santa also brought Mason Tidmouth Sheds (Thomas the Tank Engine's home) and some train tracks. Let me tell you, setting up those tracks was a pain in the ass! I am by no means and engineer, and I just kept growing more and more frustrated! I did manage to get them together in a decent pattern eventually and off to bed I went. I think it turned out ok...

Christmas morning we went to my parent's house and had breakfast and Mason opened his gifts from the family. Then we came home to see if Santa had come to the house. Oh my goodness, was that kid excited! I'm surprised he went down for a nap as easy as he did! Christmas dinner was at our house, which was fun and also worked out perfect for Mason, who was able to play with and show off all his new toys.

The next day Mason was still so excited about Santa and all his new toys. He went around to every piece of track saying "Santa bring this, Santa bring this". Then he went over to the window and screamed as loud as he could "THANK YOU, SANTA!"

Garage Fun

Last night I decided to pull my car out of my garage, turn the heat up, and let Mason ride his bike around. This turned into over an hour of bike riding, coloring with sidewalk chalk, dancing, and trying out his new 4-wheeler that his great-Nana got him for his birthday. Mason had so much fun, and Todd and I were so glad that it was something active! I'm really hoping the weather warms up again soon. This is getting miserable!

Helping Daddy move my car out of the garage

Ready to ride

What a happy boy. I just love that face!

Concentrating very hard here driving the new 4-wheeler

Having a blast!

Winter smiles

It has been really cold in Anchorage lately (welcome to winter in Alaska, right?). Mason's daycare can't play outside until it is at least 20 degrees, which hasn't happened in weeks! Needless to say we've all been getting a little stir crazy. We've been spending more time at the "inside playground" and at the "book story" which are Mason's words for Arctic Playgroundz and Barnes and Noble. But like all true Alaskans, sometimes you just have to bundle up and go outside to play...even if it only lasts for about 15 minutes before you're frozen!

Bundled up and ready to go

Didn't make it further than the front yard, but it was still a blast

It has been too cold to actually snow much lately (yes, it can be too cold to snow) but we made our own by throwing the snow up into the air. It was fun as long as it didn't actually land on Mason...then he got a little pissed. Throw on Mama or on Daddy? Awesome fun. 

Home Again, Home Again

My flight home Thursday was pretty uneventful...just the way I like it! Historically, I have never been a good flier. I don't like anything about flying, except for the vacation part that is usually attached. I hate airports, the huge crowds of (cranky) people, being cooped up in an uncomfortable seat, visions of crashing, well, you get the picture. I have come leaps and bounds over what I was 10 years ago. I used to literally throw up before getting on a plane. I could make it through security, but by the time I got to my gate I would be so worked up from nerves, I would puke. And I would NEVER get out of my seat. Ever. I can now fly without puking, get up and pee if I need to, and I've even been able to relax enough a couple of times to get a little nap in! I still will NOT change my seat, though. If my plane crashes, I need people to know I am me, and if I change seats they may not be able to tell right away who is who.

Ok, I got a little off track there. Basically, I'm home again with my boys. Mason keeps talking about "Mama on plane" which is soon followed by "Mama HOME!!!". Next time I'm going on a plane will be February, and all three of us are going! And it will be to Mexico to enjoy the sun and the sand...not the ice and the wind of Chicago.

In other news, I had my 7th Tysabri infusion today and found out that my blood test for the JC Virus (the virus that is thought to be causing PML/death in Tysabri patients) was negative! This lowers my risk of getting PML significantly and gives me one less thing to worry about. Yay!

Like father, like son

The other day the three of us were downstairs playing when Mason asked to watch a train movie. Have I mentioned lately how obsessed this kid is with trains? Well, now that he's seen a couple of train movies his obsession has been raised to absolutely obscene levels. We don't let him watch much, if any, television, so these movies are a huge treat to him. Anyway, we put one on and curl up on the couch to watch it. I look over and get a little smile at my two boys sitting together to sweetly, and remember just how much alike they are, both in appearance and demeanor. 

Then I laugh even more when I see just how alike they really are. Mason has always crossed his feet when he sits. He has been doing it since he was a tiny baby, just like his dad. This day I realized that they both cross their feet the same direction. How cute is that?

Open Bed

A few days ago Todd and I decided to be brave and take the tall rail off the side of Mason's crib. He hasn't decided to climb out of the crib, but I know that day is totally coming. So, to try to avoid injury, we decided to move toward a toddler bed. This scares the crap out of both Todd and myself. Mason has always been so incredibly easy to put to bed, we have been SOOOOOOOOOOO lucky with this! Our fear is that once he isn't contained in his crib this will be over, at least for a period of adjustment.

Anyhow, I ventured to Babies R Us and picked up a side rail to put on the crib. This allows Mason to get in and out on his own (EEK) but keeps him from actually rolling out of bed in the middle of the night.

So far, knock on wood, it's been going really good. He is super excited that his bed is "open", although the first night he did ask Todd to close it and we had to explain that it doesn't close any more. My little man is growing up!

Here's what his crib looks like now. It's kind of hard to explain what it looks like now.

Don't worry that it's not good enough for anyone else to hear...just sing, sing a song

Mason is turning into quite the little singer lately, and it's so fun to realize just how much he really does listen when I sing to him. Normally, turning the camera on means he stops doing whatever cute thing he was doing, but today I was able to catch a little of his lunch serenade on video. Enjoy!

Here is Mason's version of ABCs (he calls them ABX) and Twinkle Twinkle Little Star. He also tried to blend in a little Itsy Bitsy Spider, but then started talking about his Ping Pong Pig book (in which a little pig, named Ping Pong, wants to fly, so his friends make him a trampoline).

Playing in the rain

If you don't live here, you've probably had an actual summer to enjoy. If you do live here, you know where I'm coming from. This summer has been nothing but rain, rain and more rain. If we didn't get out and do stuff because it was raining, we would never leave the house. Luckily, we have one tough little guy who loves to play outside no matter what the weather is.

I found something called the "muddy buddy". By far the best thing I've bought for Mason. It looks like a hazmat suit, but it allows Mason to play outside in the rain all he wants without getting completely soaked. As you can see, puddles are his friend. The first picture was taken in Whittier. Mason loves everything about Whittier...there are tunnels, boats, trains, birds, and lots of puddles. The next two pictures are at the park down the street.

With Daddy, playing in the dirt on a rare non-rainy day. (Notice I didn't say sunny day)

Here we are at the cabin taking a "bath". This is the same bowl my mom gave baths to my little brother in when he was Mason's size. I will have to post an entire entry about our trip to the cabin as soon as I get those pictures on the computer. To give you a little preview...shocker...he LOVED the cabin!               

Corner lot

I am that lady that lives on the corner. And someday, I'm going to be that old lady that lives on the corner. I freaking hate it when people walk across our front yard! Todd and I talked about putting a fence up, but of course money and time are always issues...and they were spent elsewhere this summer. So we've started another winter of people cutting across our lawn.

Now, I guess I'm not quite to that lady standards yet. I haven't actually yelled at anyone doing it...if only they could hear what I say in the safety of my house when I see them.