Saturday, July 14, 2012

Birthday Number 3!

After Lucy's second birthday snuck up on me last year, I vowed that I would allow myself more time to plan something this year that involved more than a cake and some crepe paper.  There never ends up being enough time to do everything I'd like, but the surroundings were a bit more festive this year :)  Of course, with Lucy's Sesame Street obsession, there was really only one choice for theme.

I made some of my own decorations...

...and bought some.  Easy peasy!

 True to form, Lucy was awake early and a bit cranky by the time we got there - so a bipap break was needed.

 And as soon as people started arriving, she took a nap - she was not happy when she woke up!

This year's cake was courtesy of Dairy Queen, so that Lucy could taste as much of it as possible.  

 It cheered her up a bit :)

We yanked on a pinata, and opened presents.

 Lucy got to see Mateo, a little boy from our town that also has SMA!  Mateo is a Mickey Mouse fan, so he boycotted the party by sleeping for most of it.

 And Lucy got to see some of her very favorite friends :)

 And after everyone left, Lucy and her cousin Sawyer had some one-on-one time.

Lucy's a bit more mature than Sawyer.

And now she has a new pile of toys, clothes and DVDs to amuse herself with :)

Thank you to everyone who wished Lucy a happy birthday, and thanks to all who were able to celebrate with us.  Every birthday is a milestone for a child with SMA - a miracle, really - and though we've settle into the fact that it is our everyday normal, every day with Lucy is something to be celebrated.  Every day is a victory in the face of the doctors who told us "no."  Our choice to fight for (and alongside) our daughter is rewarded with her beautiful smiles and her unique personality, which shines brighter each day.  These hours, days, and every birthday that passes brings us closer to the cure - the ultimate birthday present for any kid with SMA!

If you wish to help that gift along, please visit The Gwendolyn Strong Foundation and make a birthday donation - so that no families have to wonder if their SMA child will see another birthday.

Tuesday, July 3, 2012

FSMA Conference 2012

So, at the end of June we were fortunate enough to be able to attend the annual FSMA conference - this year it was in Minnesota, only a 6ish hour drive for us.  We got to hit up the Mall of America while we were there too, and be all tourist-y.  Lucy brought home some fun souvenirs, Noah brought home a Darth Vader Legoman keychain, and I brought home a wicked head cold that I am just now recovered from, a week later.  Blessedly, Lucy was spared.  It was a doozy, and would have put her in the hospital for sure.  Between that and birthday prep, I wanted to squeeze in this post!

I have to admit, we didn't really go to the conference for the workshops (though we did hit up a couple.)  We went for the camaraderie of being surrounded by 1,000+ people who understood our life, at least on some level.  Not all people affected are type 1, like Lucy.  Lots of people there were type 2, which is less severe.  You had to look out for yourself, because there were powerchairs zooming all over (though I must say, they had some pretty skilled drivers!)

Just what did we do there, then, if we weren't in workshops all day?

We got to make new friends.

And see old ones.

Take lots of group pictures.

And have some first-time experiences. 


And Lucy got to try some eyegaze technology!  It was her first time, and she immediately established that she was going to use it how she wanted - to make sheep noises.  The little part I videoed was the part where she was not cooperating because she wanted her sheep flash card back.  

We were surrounded by people we could completely relate to, which was pretty amazing.  And Lucy was surrounded by kids just like her, which she seemed to appreciate (when she wasn't sleeping - this girl has a knack for going to sleep at the exact times we want to do something fun!)  There was a huge aquarium, dance party, pj party, a carnival, and swimming.  All catering to the needs of a kid with SMA.  It was fantastic!  We got some great tips and tricks from more seasoned parents, and got to share some info with other families - who came from all over the world.  We were reminded of how blessed we are to have Dr. Schroth so close by.  And we made our trip safely, there and home.

I'm so glad we got to go this year!  It's funny, because we met so many people that we haven't met before, but since I talk to almost all of them online, it's like getting together with family... but family that implicitly understands our lives with SMA.  It's indescribable.  It was amazing.

Now.... on to the birthday countdown!