Saturday, July 30, 2011

Alright, so I have access to a computer and the Internet again! It is slow so I'm not able to upload my pictures and begin my massive updates, but I can at least talk about a couple of things that are on my mind.

We went on a hike today and were talking about family ... you do that on a family reunion. There are so many things that I could say, but I wanted to share some information about my Dad.

I have talked about my Dad before and how much I adore him. He is my example of spiritual greatness. He has always had a genius mind. Since he also happens to be an extremely humble so I wanted to toot his horn a little bit.

He has been instrumental in the recent advancement of his company. There is a technology (that is beyond my comprehension) that people have been trying to create since the 1960's. My Dad figured it out!! He is the only one in the world that was able to create this technology. My Dad is the leading thermoelectric mind in the United States and maybe even the world. I am so grateful that God chose him to be my Dad. I adore him and think the rest of the world should too.

Thursday, July 7, 2011

where will you find us?

What else have we been doing since we got home? Spending time outdoors!!! We have been working in our garden, which currently resides at my friends house. When I started the garden planning I didn't know when we would be moving so my dear dear friend, Kristen, offered one of her planters. It has been a great way to try out square foot gardening and I think I might be in love!! This garden is gorgeous and, so far, pretty darn successful! My potatoes and turnips have really taken off, so I hope I have success with my carrots. They are having a hard time seeing the sun :-)

And of course we celebrated

This was an ................. interesting day!

My cousin and her family were staying with us so we spent the entire with them, which was very fun! We started out by touring a Hudderite Colony. That was very informative and enlightening, and we had a GREAT time!!! Following the colony we met some very cute llamas. We hustled our buns home to get ready for the football game. We took the C-train only to find that half of it was shut down for maintenance and you had to take a bus to downtown to catch another train. This adds a good 30 minutes onto the trip. The game was great ... other than the Stampeders lost.

(side note about the game?? One of the times I was sitting with Landon the mascot came up to us. I felt like we were meeting the Disney characters all over again! The irony is that earlier in the day he was charging the giant llamas with big teeth, but he is afraid of a fluffy dog and Mickey Mouse?? What is it with this little boy and mascots?)

After the game it was utter MAYHEM trying to get home. Getting a wheelchair through a massive crowd is painful! Once we were on the train there was a very nice, very drunk man who entertained our children for the VERY long train ride. After we finally got to the location where we caught the bus we rolled as fast as we could to get the bus.

Once on the bus we squished ourselves in surprisingly well. At that point we got stuck in traffic ... bad traffic! There were people hitting the side of the bus because they wanted to get on, but our bus driver refused because there was no room. Fortunately for us our boys could kind've see the fireworks as we sat still for45 minutes on a crammed bus.

As soon as the traffic started to move our bus driver got a little ambitious. Don't get me wrong, it was great that he was trying to get us back as quickly as he could, but at one point Evan's wheelchair goes flying into the front. Thank heavens there was nobody standing in front of it, and thank heavens Justin was holding Evan at the time.

We finally got to the other train. We get off the bus and there is a girl, in plain view, hunched over peeing buckets on a tree!! She didn't even try to hide!!!! I guess she was on our bus and really had to go while we were stopped in traffic. The amount of fluid coming out of her was pretty impressive, though I'm not sure how she managed to keep it off of her pants.

Finally we manage to squeeze onto the next train where we are surrounded by WASTED teenagers!!! They were obnoxious, rude, and loud!!!! I was happy to finally get home and get my very tired babies into bed at 12AM!!! Poor guys!

Wednesday, July 6, 2011

fun fun fun

Fun fun fun, that's our life every summer and I love it!!!

Here are a couple of things we have been doing since we got home. I am not going to overload you with pictures, so it will be a couple of posts.

Last days of school. Evan's school is a-m-a-z-i-n-g!!!! I love his teachers and therapists. The program is (as my brother would say) legit!!! I got some great pics of Evan and his teachers at the water park. Landon and I met up with the class so we could have some outdoor fun too.

Ms. Kyla

all this little guy did was run run run!!!
Ms. Jenna
Evan insisted on "suntanning" between water runs :-)
Auntie Kelley lives close by to the park so she came along for the fun ... and brought her pups!

We also had the privilege of participating in a pie fight!! No joke, it was sooo much fun! Justin has a cousin who has always wanted to have a pie fight so his wife gave him a surprise pie fight for his birthday. He was the only one who didn't know about it. We made sure to prepare Evan's chair for the big event.
Evan, Mama, and Daddy LOVED it. Landon was not so much a fan, but think about it. Someone counted to three and then everyone started running around screaming, and shoving pies in each others faces. He was nervous, but doing fine, until Justin came and got me. As soon as Landon saw that, he melted down .... poor guy! (I was holding him at the time). I don't think we traumatized Landon too badly, and it was awesome!!

The things I learned

There were so many things that I took away from the conference, but here are some of them.

1) I am competent. I did learn something from every class that I went to, but mostly I didn't feel overwhelmed. I felt like I have a good handle on what Spinal Muscular Atrophy is, how it relates to us presently, and how it will probably look for our family in the future. It was good to feel like I am doing alright.

2) I really think that there will be a cure. Whether our own family benefits from it or not I really believe that they will figure out a cure. I am very realistic about the obstacles in the way, the years it will take, the loop holes the research has to jump through .... but it will happen, and THAT is exciting! I mean, already there is a clinical trial in Utah, Colorado, and Wyoming that will be doing newborn screening, that is huge!

If you want to read more about where the research stands right now you can click here. If you have any questions at all about it I would be more than happy to answer them.

3) From the open discussion of parents who have children with type 2 and 3 I wrote down 24 great ideas to apply to my life to aid Evan in his everyday experience. These are little things that make a BIG difference. (For example: bring a beach towel with you to use on a bathroom floor when there is nowhere to lay them and they have outgrown your lap)

4) I learned some GREAT hands on physical therapy. I learned the best stretches Evan can be doing and watched them being done. I learned some things to specifically watch for as well.

5) It's a wonderful Life was a question answer session with adult, or older teenagers who have SMA. It was truly wonderful .... and terrifying. As a mother I teach my children to dream. I teach them that if they work hard they can achieve anything. I want this for both of my children, but the thought of Evan living on his own, being in charge of his own caretakers, moving to a different city to attend University brings a bit of anxiety to me. I know that he is only 3 (almost 4), I know I want this for him, but it still scares me a little.

There are lots of little things that I won't write down here, but were really great to learn. It made me think about a lot of things. One of my favorite quotes was when a girl was talking about siblings. She was talking about how great and supportive they are. Then she added "don't get me wrong. When I was little we still fought and I still tried to run them over." Made me laugh, and feel a little better about when Evan purposely runs over Landon.

6) I finally got an answer about how many calories Evan needs to have in a day!!!! I also learned a trick about bed time snack to trick the body into not starving.

7) I learned that there is a vest I want to get for Evan that will work in conjunction with his cough assist machine. It can be worn during play time or a movie. It is amazing ... but expensive. I'm pretty sure it isn't covered either, but it is something that I know about now and can add to the list!

8) We learned that we are lucky. We thought that Evan slept really well through the night because of his age. We know that sometime in the near future he is going to need us to help turn him. We know we will be needing specific night time equipment to help him sleep longer stretches through the night. We know that we will not be typical parents who get to sleep through the night. I'm ok with that because it helps my child. What I didn't know is that it seems that Evan being able to roll during the night on his own at 4 (almost) is pretty abnormal. It seems most start needing help around 2 and 3 years old. In any case it made me feel lucky and proud of Evan.

9) The most important thing that I learned is potentially the best thing that I could do for my child. I kept hearing it over and over again. "

One of the best things you can do for your child is to get a care taker in the home as soon as you are able."

This was HUGE for me because an opportunity presented itself about a year ago for us to hire a caretaker from Columbia. I was fairly hesitant, but we weighed the pros and cons and couldn't ignore the very long list of pros. We started with the process and I was excited because I really do need the help. But I couldn't shake the slight bit of doubt in the back of my head. I knew that people would wonder why I need it. I have actually started to tell people that we are getting help soon and more often than not they are very confused why I would need the help. I didn't want people thinking that I don't want to be an involved mother.

The message I got over and over was that the sooner you hire someone in the home the better. Evan needs to be comfortable with other people helping him. He needs to feel comfortable with other people touching him. When he is an adult, attending school, going to work, etc. I won't be able to be with him 24/7 and the adjustment is easier when the kids are young. It will allow me to be more of a mother first and caretaker second. It will save my back!!

Basically hearing this message over and over gave me permission to be 100% ok with our decision to hire someone sooner than later. It was such a great weight off of my back and now I am just excited!!!

Wow, I just wrote this whole post with only one spelling error. Even then it was only that I was typing too fast and got the letters switched.

Tuesday, July 5, 2011

Convention: Day 3

What do you think of my new blog layout????
Thank you Alycia!!!
You are amazing!!!!

Day three of the convention was just as wonderful as all of the other days. Evan had been looking forward to the appearance of the magical knight ever since we got the schedule. It was love at first sight!
I finally got to meet MJ Queen and Brenda!!!! When Evan was first diagnosed I wrote a post and MJ made a comment. She told me a little about herself (she has SMA) and asked if she could send him a blanket. It was a bright spot in the beginning, which felt like a nightmare. I am friends with MJ and her caretaker, Brenda, on facebook and have always felt close to her because of the emotional and physical comfort she sent our family in the form of a blanket. I am just bummed that the boys were napping and didn't get to meet this wonderful person.
Through the conference we were able to get half price tickets to a pirate dinner theater. I have an awesome group shot of all of us, but I still have to scan it.

Joseph and Sahara were chosen to go up and be a part of the show.
After the show I went and helped Justin get the boys in bed, and then I hopped in the Eichelberger's car and went to there house with them and Eric. It was so great to see Whiskey again. Whiskey is our Buddy's biological brother. (Buddy is our cat) Whiskey and Buddy have so much in common, so it was fun to just watch him and cuddle him again.

I was so lucky that Gladys came over with Tison so I could see them. We had a lovely talk and I am so grateful that she is my friend.

Once Gladys left the four of us friends just sat on the bed until midnight, talking like old times. It was a lovely relaxing night.

On the way home Semra and I were stalked by an armadillo. Ok, so we were stalking him trying to get a picture of him. Too bad the best picture I got was of his butt. It is really hard aiming a camera in the dark.
Convention: Day 4
We had some special visitors during breakfast!!!
While in line these two realized they are chair twins. They were pretty cute together.
Irony of all irony ... Landon LOVED meeting Buz Lightyear! He kept waving, and saying hi. In fact he hasn't stopped talking about Buz since we got home. Buz and Woody were very excited when they saw their pictures on Evan's backpack.

p.s. Buz is a flirt .... I wonder if Jesse knows???

We went to our final classes (AMAZING) and went to pick up our children ... only to find that Evan was replaced by a creepy skeleton!! He is a smart skeleton though, he is wearing a hat sticker on his head.
and a boot sticker on his foot.
And that was it. The conference ended and we flew home. It has been nice to be home after being gone nearly a month. Don't you fret though ... there has been very little resting, you can always tell by the state of my house how much we have been playing.

More to come!!!