Friday, January 30, 2009

Evan's first steps!!!!!!!!!

I am more than thrilled right now!!!! I am beyond ecstatic!!!!!!!!!!! I am sooo HAPPY!!!!!!!!!!!!!!!

We had another physical therapy appointment this morning and I knew we might learn more about getting a stander for Evan. I walk out of the elevators and I see a man pushing around a mini stander. My first instinct was "I hope that's for us!!" But he was walking the other direction from where we were going. Long story short ... IT WAS FOR US!!!! They taught me how to put Evan in it and he HATED it!!! He screamed the whole time, but I knew this was the best thing for him and so I told him on the way home that he was going to have to practice again.
When we got home I strapped him in and he LOVED it!!! He had a HUGE smile on his face and within 5 minutes he learned how to use both wheels at the same time and can now move around. Our baby finally has the independence that he has been craving! I had to feed him lunch before we head up to the ski hill and he didn't want to come out of it.

I am crying as I type this! Seeing the joy on Evan's face as he realized he was finally in control of his movement brings an indescribable joy to my life ... there are no words for how I am feeling right now!!!!

I WISH I could find our video camera!!!

First thing he did was check out the breaksHe decided they were pretty darn cool!
He had the BEST time motoring around and banging into walls ... I CANNOT wait to see how he improves his skills!Finally independent!!!

Tuesday, January 27, 2009

It is amazing to me how much warmer 27'F is than -27'F!

Mommy Time and a bed of nails!!!

Dear Blogging friends,
I am back with a HUGE post of the latest update. My mom was here for 10 days offering us some much needed emotional support while begin to figure out our new life with SMA. It was wonderful having her here with us and I will be forever grateful that she braved the bitter cold weather to be with us. I don't think she will ever know how much it meant to have her here.

While my mom was here we mostly stuck to our normal routine (which isn't so normal because we are still trying to figure everything out). The biggest addition to our schedule is Evan's swim therapy. Lanny found a pool 10 minutes from our house that has warm water, which is what Evan needs because of his lack of muscle. Swim therapy is the BEST thing for SMA kids and he loves the water. He is starting to kick his legs and move his arms. We go three times a week and he is really becoming familiar with the pool. Today as it was getting close to when we end he started saying "Nani, Nani ... hot ta, hot ta" (translation: "Mommy, Mommy ... hot tub, hot tub"). As he is saying this he is pointing to the hot tub!

Daddy got to go with us one day.

While my mom was here some BIG things happened. The biggest yet, and hopefully the start of a better year, JUSTIN PASSED HIS EXAM!!!!!!!!!!!!!!!!!!!! Finally we are out of limbo and we will be able to actually afford Evan's SMA needs. This is a HUGE prayer answered for our family!

Evan is practicing for when he goes to Daddy's office.

Another blessing was the visit from my Grandpa. He had some geneological research to do in Calgary, and when he heard that my mom was coming up he decided it might be a good time to actually do the research. It was wonderful having both my Grandpa and my mom with us! We went to the military museam with Grandpa and the neatest thing happened. Grandpa was trying to sort out information on my Great Great Grandfather who fought in WWI. The man in charge of archives found all sorts of information for us, but then came back with something really special. In the whole museum they only have ONE surviving trench book and it includes my Great Great Grandfather's troup. Grandpa found way more than he expected and it made the trip that much better. Evan really took to his great-Grandpa, and I sure do love him!!!! Thank you for coming Grandpa!

On Saturday, after my Grandpa left Mom, and I went with my friend Kathy to a Farmer's Market that I had never been to before. Mom and I ate before we headed out ... what a mistake that was!!!! This market was HUGE and there were so many samples to try. We felt like we were going to explode by the time we got all the way through. One of our faves????? Mini Japanese Oranges .... mmmm good!!!

While mom was here we also drove out to Cochrane to see my Grandma Leavitt. Of course the day we drive out it is snowing and windy! I was freaking out the whole way there (oh yeah, it was also -20F', so you can take a wild guess how happy we were about that!!!) We had lunch and it was wonderful! We were with Grandma for about 3 hours just gabbing away!

I had to put a picture up of my Grandma's purse ... 80 years old and still stylish ... WOW!

As most parents of toddlers know, they have the cutest little personalities and make the CUTEST faces to go along with it. This first picture is of Evan saying "cheeeese" for the camera ... adorable!

This next picture is priceless. Evan is a very sensitive boy and does NOT like being scolded. We happened to catch his face on camera which makes me laugh just as hard as when he makes it in person. When he is responding to the scolding all three of us (me, Justin, and my mom) had to cover our faces so he couldn't see us laughing ... just LOOK at him!

It was the saddest thing to say goodbye to my mom! Thank you mom for coming and being with us! We will always remember it!!!! Evan already misses his Grandma and still looks for you when I ask him where you are. (He also apologizes for not letting you sleep, and hopes that you are starting to catch up to where you were).

My mom and I both cried when we said goodbye and so I was so grateful that Kathy invited me to the space museum. I needed the distraction from leaving my mom! Boy is that museum a fun one! Here are some pics of our day there.

youngest man on the moon!!!!

Did Evan shrink, or did that ant GROW???

YUP, I am actually laying on a bed of nails ... now I can take that one off of my bucket list!!!!!

Friday, January 23, 2009

I'm still here, I promise!

My mom has been here for the last 8 days, and we only have two more days with her. It has been wonderful having all of these visitors staying with us! It has been a wonderful distraction as we are learning about our new life with SMA. I feel very lucky that we have been given this gift, but I am sorry that we don't have an extra bedroom for the computer. There have been so many people who have asked about my next blog, and truly I think about blogging everyday, but I also just want to spend time with my mom right now. Anyway I kept her up until 1:20 last night and she has gone to bed. I figured I would take the time to just say a quick hello!

I will say one thing while I am on. I love American Idol auditions!!!!! A girl from San Fransisco said that the judges iractitate her. It took her a long time to get out the word "iractitate". We couldn't keep ourselves quiet .... she meant to say "irritate". Oh man, some people are definitely DUMB!!!!

Friday, January 9, 2009

Alright, time for another update, and then we will be back on track! Good thing too, because it I have been itching to get back at my blog for a while!!!

On January 29 we planned a big friend get together out at Mark and Lanny's. We were going to go ice fishing, sledding, quading, and have a bon fire and drink hot chocolate!!! Well it didn't quite happen like that, but we did go ice fishing and drank some hot chocolate and tea! Barry and Kathy came. I really wanted to get a picture with them, but we were soooo frozen by the time they got there that it just never happened. (I couldn't feel my limbs as it was :-) Since we know Evan will not be walking we have already started to make some adjustments of our own. We bought a sleigh/sled for him and we can pull him around anywhere! We just bundled him up and off we went. I was so paranoid about him getting cold I really packed on the layers, and it worked too. I reached down inside his coat to check his temprature and he was toasty!

This is the family all together out on the ice. My and my grandma Shaw. Evan with Granny Lanny, and Evan and Daddy!

I had to add the Vampire picture! My little Edward!

New Years Eve we went to my Grandma Leavitt's 80th birthday party. It was fun, and how many kids get to have a picture with 2 of their Great Grandma's???? Lucky Evan!

After Christmas we were lucky enough to have my Grandma Shaw staying with us, and my cousin and her husband stayed with us too!! It was sooo fun to have so much family in our home! I love it and can't wait for this week when my mom and Grandpa Shaw are going to be here. :-)

We always knew he had brains!!!

There is something here called hore frost and it is BEAUTIFUL!!!! It only happens when there is alot of moisture in the air ... or at least that's what they tell me! It is what is covering the trees ... not snow.


He's a mans man baby!!! Evan is eating his ribs in preparation for the big game. Yes everyone, I mad ribs ... and they were GOOD!!!! If anyone is wondering what the big game was ... shame on you!!!! :-) On January 8, 2008 the University of Florida football team creamed the Oklahoma Sooners in the National Championship Game!!!!!!!!!!!

It is Great (uh huh) to be (a what?) a FLORIDA GATOR!!!!