Wednesday, July 6, 2011

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.


Walmir & Irene said...

Kira!!!! I'm so amazed by you and Justin's attitude about this whole thing. You guys are amazing parents and Evan is a lucky kid to have you as parents. I'm glad the conference was worth it.

BTW... I hate to brake it to you, but you do have one spelling error - Colombia (the country) is spelled with an O, not U. But that's okay. It can be a tough one to know about.

Walmir & Irene said...

This is Walmir.

Lowdogg said...

That comment cracks me up, because I thought to myself, "Girls don't correct other girls on things like spelling." Sure enough, it was Walmir.

I echo what Walmir said. Thanks for sharing your insights with us.

Kira said...

darn!!! and here I thought I was doing so well ;-)

Lisa said...

What a great post and what a great experience for you all. I've always said that Evan is one lucky boy to be blessed with the parents he has. Not everyone can do what you both do with such love & grace. BTW, Walmir used the wrong "brake" since we are pointing out spelling errors :)

Peter and Mandy said...

Those conferences sure do teach you a lot. I think it will be a load of stress off your shoulders to get some help with Evan.

Walmir & Irene said...

You got me there Lisa!

But I should be allowed to make that mistake since English is my 3rd language! (Of course we can also say that Kira is allowed to make her mistake since she's not from South America)