Help me help me help me!!!

Ok my 18 followers, and anyone else who happens upon my little blog, I need your help!

I have a crazy New Years resolution!!!  Remember that project I told you I was working on?  Well here it is ......

I am trying to get the attention of Josh Groban to help me write a song to raise awareness of those living with SMA.  My sister helped Evan and I make a short video which I posted on YouTube.  Please pass along the link to as many as you can think of.  Now we just need to get activity on this link.

Like it, pass it around ..... lets get some awareness going!!!!

view the video through this link

DEAR JOSH GROBAN

Butter

You know you cook with a lot of butter when your 4 year old thinks that it is a food group worthy to mention.

This morning Evan calls to Landon:  "Landon come down and eat breakfast!!!  We are having muffins, oranges, and BUTTER!!!"

Wow it's been a rough couple of weeks for me!!!  I'm not going to bore everyone with all of the gory details but some of them include.

-Broken Vans
-a long lasting illness that ripped through our family (a couple of times)
-Justin leaving for a conference in Vegas
-Evan spraining his foot, which includes trips to Children's.
-I completely threw out my back (when Justin wasn't home)
-and loads of little things that add up in life.

I'm really excited though because I have a project/idea coming to life soon and I am going to need a lot of help with it.  I'm so excited ..... keep checking in!!!

here are some of the happy things we have squeezed into our lives in the past hard weeks........

I got the most beautiful note from my friend yesterday.  It made me cry (surprise surprise).  I am so grateful that I have great friends in my life!!!

Its a good thing he's cute

Yes folks it is a VERY good thing he is so cute because WOW!!!!!

Landon is really smart.
Landon is strong
Landon is mischievous.
Landon is active.
Landon is stubborn.

Just 4 of the things he has done in the last two days?

-Called 911
-started the washer ... with no clothes in it. 
-started the dryer with dry clothes in it. 
(both of those last two impress me a lot.  You have to push buttons in a certain order for it to start.  Apparently he has been paying attention and remembered!)
-and stabbed his brother in the eye with a fork.

grand opening

I think I have become the official non-official spokes-mommy for Evan's school.  They held their grand opening for the McKenzie Towne location (which is where Evan attends) and they asked me to speak at the ceremony.  I really love this school!  I love the staff, I love their training, I love how open they are, I love their "curriculum" and I love that I get to decide how, when, and what my child's goals should be.  This particular location that is so close to us is integrated and I am so happy that Landon gets to go next year and reap the benefit of small classes and specialists in the school.  Because the teachers are all special needs teachers I know they will have the patience for Landon's "activity".  The building itself is AMAZING!!!  The floors are all heated because they do so much floor work, the full-size gym has more sunlight than any other room I've ever seen before, and the playground is large and even has a rocking "pirate ship" that Evan's wheelchair can go in with all his friends.  They have a sensory room, where everything lights up, a music room, and a very large library that makes me want to lay down on the mini stuffed couches and read.  

After my speech they had Evan come up and cut the ribbon with the BIG scissors.  He felt so special, and so he should!!  We then did a couple of interviews, which we weren't able to watch last night and haven't been able to find online.  When we do find them I'll post them on my blog.  

Besides me and my boys being thoroughly congested it was a great morning!!!          

a near perfect day

Dear Skin, 

I know you may be confused as it is early February but yes this is the sun.  Yes don't be confused you are still in Calgary and no you won't freeze off today.  Glad you are enjoying it and you're welcome for the vitamin D!

I swear to you, if every winter was like this one I would not complain very much.  Saturday we had a near perfect day!!!  The weather was quite lovely!  It was in the high 40's but the ice was still safe.  Justin's family came over and after some of us ate lunch we all went out on our lake to skate.  We had a family hockey game, IN SWEATSHIRTS!  I was even wearing a sweatshirt, which should tell you something about how it felt.  Evan and I played goalie and we even managed to block some shots :-)  I wish I had the "good" pics but I can't take the pictures when I am helping to manage the boys.  Chelsea got a great action shot of Evan and I defending our goal, so when I get that maybe I'll upload it.  

After skating for a while we all headed into the hot tub and enjoyed the sun!  I was thoroughly content!!  

(this is normally what we are dressed like when we venture to the great outdoors!)

We decided since it was Evan's first day feeling well from his "sick" week that we would take full advantage of it.  The plan was to take the boys to a fun dinner and then to a movie.  We made it to dinner, where Evan's fever came back and he stopped eating completely.  The problem is that he hadn't really eaten a ton the whole week and he is so small that it really is a HUGE problem to be scared of.  We called it a night and by the time we got home Evan was not doing well at all.  I was nervous and then he threw up, which made me really paranoid.  

People living with SMA aren't supposed to go more than 6 hours without eating and Evan now had NOTHING in his stomach.  I decided that I would be sleeping in his room with him.  I made some phone calls for some emotional support and guidance, checked his skin to make sure he wasn't dehydrated and spent the night helping him cough and making him drink.  

He woke up a little better but not well enough to go to church.  I am starting to feel some stuff in my chest and I can't afford to get sick this week.  So I sent my other two boys to get Evan some antibiotics and they dropped it off and went off to church.  Evan and I took a nap together and slept from 1:40-5:00.  I can't remember the last time I napped that long ... it was exactly what I needed!!!!  Evan woke up WAY better and I felt like it might be safe to take him to the in-laws to watch the rest of the really amazing Super Bowl game.  

this is pretty much what sick days/weeks look like for us.

 On another note, my orchid bloomed again!!!  I just think it is gorgeous and I can't wait for the other buds to bloom!  It is going to look amazing!

out of the mouth of babes

Poor Evan has had a rough week!  On the weekend we were at the pool.  Evan had invited a friend and our whole church congregation was there.  There was so much going on and I forgot to buckle him into his chair.  Well of course he face plants on the concrete.  People with SMA don't have any reflexes and so when Evan goes down, he goes down hard!  I felt so guilty!!!  He doesn't have any control and I was the one who forgot to buckle him up!  I know things happen.  This isn't his first fall and I'm sure it won't be his last but I felt so bad.  Daddy gave him a cookie and Evan let Kristen ice him up.  He recovered with no serious injury but a really REALLY impressive goose egg on his head.  I cried the rest of the night and Evan was so sweet reassuring me that he was alright, but for the next day and a half he would remind me to buckle him in.

Now he is sick.  Not too bad and that is how we are hoping it stays!



Now for some positive stories:


Evan has had some killer one-liners lately.

Evan was constipated today and as he is trying to push he blurts out "freakin' poop, just come out!"

Evans teachers were putting him on the bus and told him to have a good weekend.  He responded to them with, "Cheers to the freakin' weekend!" (the Rhianna song)

At school Evan was being really slow and his teacher asked him why he was so slow that day and he said to her, "Jesus made me this way so leave me alone, ok?

Miss Kyla says to the class "Who's ready?" Evan replies very loudly, "I was born ready!"

I'm not going to spend time complaining about the weather because for the most part this winter has actually been quite lovely!  (I can't even believe how nice it is right now) but last week it was ridiculously cold (like -40 people).  I had the boys in the car attempting to drive around some errands (our car was broken) and Evan says from the back.

Evan: "Mom, why do we live in the north pole?"
Me: "Because this is where Daddy has a good job"
Evan: "Well I hate living in the north pole, its too cold here."
Me: "I hear ya buddy, but at least we can travel a lot!"