Thursday, June 30, 2011

Convention: Day 2

This conference was unbelievable! I will write a completely separate post about some of the things I learned. For now I am just going to add pictures and tell you some stories about things other than the classes.

I woke up early this day and found the Quantum wheelchair vendor. He was more than helpful and rigged Evan's wheelchair to work for this first day, allowing him time to go home and get the parts needed to actually fix the wheelchair. He did all of this free of charge! I am going to try and contact him and tell him that he should charge Continental for his time and parts since we do have an open claim with them. Lets hope I can get a hold of him. He was just an angel on earth.

this is where we ate breakfast every morning.
The conference had a children's area where we could leave the kids. This was an experience we have never had. We cannot usually leave Evan in places like this. We have never had the opportunity to drop him off and go do something. What was amazing about this Children's area is that all of the volunteers are siblings of kids who have SMA, or relatives of kids who have SMA, or physical therapists volunteering their time. Everyone working has experience working with children who have SMA, so we felt comfortable leaving Evan. Landon was in the "baby" room and was happy as a clam to have room to run and play.

Evan had a GREAT time!!!!

This was the day that the conference had tickets to Epcot. We met the Eichelbergers and Eric there and just had a blast!!! They have changed some things since we were there last and we loved it so much more!!! There was supposed to be a dessert in the evening for the convention, but when the torrential down pour started we decided it wasn't worth the effort (with the wheelchair) to find out where the dessert had been relocated. So we ran for cover in Mexico, ate some dinner under a shelter and ended up with a front row seat for the fireworks show. Then we had to walk home in the rain. Did you know that getting caught in the rain with an electric wheelchair is no fun?? By the time the park closed Evan had been driving in the rain for many hours. He made the decision to sit in the warmer, and totally covered stroller with Landon (not to mention it was about 4 hours past their normal bedtime), so I drove the wheelchair back to the hotel.

Never fear ... we still had a GREAT time!!!!

Did you know that Disney brought back Captain EO????
ROCK ON!!!!!!! It was AWESOME!!!!

long long long day for the boys!

Wednesday, June 29, 2011

Convention: Day 1

After our fun at Cocoa we went to Orlando to take part in the International Convention for Families of SMA (FSMA). The Da Costa's, Eric, and the Eichelberger women came with us to a really awesome restaurant called T-Rex. This restaurant has robotic dinosaurs throughout the entire place. Every 20 minutes there is a meteor shower that affects each room differently. There is a deep sea room, a fire room, an ice-age room, and we sat in the forest. Evan was in love, Landon and Christian were terrified at the beginning and apprehensive by the end.

this child was in awe the entire time!

Christian during a meteor shower ... tooo funny!!!
Landon just held on as tight as he could to Justin's neck.
Our waiter introduced us to this dino, which promptly became Evan's best friend.
I love Disney!

by the end of the week our little guys became friends.
this scene from Sleeping Beauty is entirely made out of lego!

Families of SMA
The SMA community is a relatively small one. 1 in every 6,000 babies are born with SMA. When we heard that the international convention was in Florida we jumped at the opportunity to go. We got into our room and headed down to the main reception. It was already so fun just being in a space where there are so many families in our situation. There were so many people in wheelchairs. We felt right at home. When we ran into our fellow Canadian friends we were having such a great time, and then ...............

Evan's chair stopped working.

I started to cry. I started to freak out just a little. Here we are at a convention for Evan and his chair is broken!

Thank heavens Susi and Bruce was there. I really do think that God was really aware of my placement when the chair broke again. I would have turned pretty hysterical, pretty quickly. What happened instead was that Susi and Bruce talked me through it, told me that the vendors would be there in the morning and they would be more than happy to fix it. So we put Evan's chair into manual mode and I took over the job of pushing his 300lb. chair around the opening circus activities.

We did have a good time, and thankfully the magic of the evening overpowered my anger towards continental.

The best part of the evening was when the boys got to meet the characters. Evan was over the moon excited and Landon was not really a fan. Each character signed an autograph book for our boys and we took a picture with each one. It was a magical night!

And the best of all ........
Mickey Mouse!!!!
check out Evan's face! He was so excited that Mickey wanted to hold his hand. Evan Landon managed to give Micky an apprehensive, and very reluctant, high five.

Tuesday, June 28, 2011

Cocoa Beach

We spent 3 days at the beach with our friends. It was AMAZING, and we couldn't have asked for better weather or company. Between the friends, the weather, the food, and the games it was a perfect vacation.

A lesson we learned: Landon burns! The first day out we lathered him with SPF 70+ on the hour and he got FRIED!!!! From then on he wore the sunscreen underneath a shirt that had a protection of SPF 50. Of course Evan and I just tanned.

(have I ever mentioned that this man is an incredible father??)

how many men does it take to set up a tent?
(I often have such a hard time describing Landon in words. With this picture I don't have to use any words because it is the PERFECT explanation)
(check out these eyes!!!!)

where there is a fish tank ... you will find children

yummy gator tail with Semra
Irene and John posing in the back ground make me laugh!
Evan and Sahara
this was the COOLEST eel ever!!!
Games, Games, and more Games
every night. I never laugh as much as I do when I am around these people.

Natasha ... I still can't believe I actually got her in a photo!

this is what Landon did the whole 3 days. He just ran, and ran, and ran, and ran. He was as happy as a clam and slept like a baby all three days.
Evan helped build some of the coolest sand castles. He even had strangers ask to take pictures of them.

do you want to know what I think heaven looks like???
this picture is pretty close.
yes that sleeping child is Landon. I bet you never thought that would happen! He just climbed up on our laps and fell asleep. He wore himself out!!!

Many more miles

Previous mileage: 3,046 miles (4,902 kilometers)
add my trips to .....

San Diego: 2,554 miles (4,112 kilometers)
Calgary-Orlando, Gainesville, and Cocoa Beach: 5,020 miles (8,079 kilometers)

Grand Total thus far:
8,066 miles
12, 981 kilometers

So what does going to bed at 1:00AM, waking up at 4:00AM, and taking anti-anxiety medication on a flight that your spouse is on (aka: he can watch the kids) look like?

(don't know why this is blue ... oh well) When we arrived in Houston I was holding Evan in the gateway, waiting for his wheelchair to arrive. Well it was about then that I heard a crashing. I then got to watch the ramp techs try to haul Evan's 300lb chair up the metal stairs, let it literally crash and fall on every stair up. Sure enough Evans chair arrived and it was destroyed. The cover to the battery wasn't there, and the battery was hanging out. The cover wouldn't fit back on properly. We managed to get the cover on well enough with string so we didn't completely lose it on the next flight. What made me the most angry was that the Houston people kept saying that they hadn't done anything wrong because the elevator was just too inconvenient for them.

By the time we arrived in Orlando the chair didn't work at all. What had happened was that they kept dropping it they managed to completely ripped off the breaker. I will skip the tears and hysteria that took place and say that Continental ended up having a mobility company come in the middle of the night, bypass the breaker (not a permanent fix), and then deliver the wheelchair up to Gainesville. We were about 3 hours late to Gainesville and VERY tired!!!

(this is us eating our dinner, while we wait for our luggage to come out and the wheelchair to arrive)
After another short sleep we took a trip down the Itchetucknee river. This has got to be one of my all time favorite things to do. I LOVE it!!!! I am so glad that some of our besties like to come with us.
I finally got to meet their new little man, who is pretty much as charming as he looks.
look how gorgeous this river is!

We didn't have very much time in Gainesville so we had to squeeze in what very little time we had to see as many people as we could. Unfortunately we just didn't have time to do it all. So if we didn't see you ... I promise we will see you next year.

One of the people that I did see was my soul sister, teacher, and friend. Dr. O. is amazing! While I was there she also helped me to purchase my very own English Horn. (more on that later)

I had to include this picture, just because I love it.
Evan woke up really sick on Sunday and it was at the point that it could go either way. We went to church and met up with Evan's tummy mommy. I was worried a little bit about how he would react because he really wasn't feeling well. He had a bit of a hard time, but we were able to distract him enough that I think everyone had a good time. We feel so grateful that we are able to see Evan's tummy mommy when we come to Florida. We love her more than anything. She is one of THE most important people in our life and we hope that she knows how much we love her.

After church we went to the kings house to celebrate our men for the amazing fathers that they are. Natasha is so creative and even set up a full on ice cream bar. I don't have any pictures of this, but will hopefully get some from Natasha (wink wink) :-)

By the end of this day Evan was not doing well at all and I wasn't sure whether we would be in the E.R. by the morning.

We hopped in the cars and our caravan of friends drove to Cocoa Beach.