Sunday, May 23, 2010

small victory

Emily got her one year pictures/ family pictures done yesterday.

It was a beautiful day for pictures! We took them outside at a local winery/farm. It was through the littlest hero's project. I talked about this in a previous post . Shanna Simpson, the photographer was so great! She was super nice and it was a pleasure getting our pictures taken by her! I can't wait to see them. Emily looked so cute in her tutu our friend Chandra made for Emily's 1st birthday. She is very creative, Chandra is also the one who made Emily's "hospital" blanket. We took this blanket with us the very first time she was ever in the hospital and from then on anytime we have to go somewhere we take it because it is such a comfort to her. We get so many compliments too!

Emily would not smile for her pictures though. We tried and tried and made complete fools of ourselves but I am sure we still got some great pictures!! Thank you Shanna for being a part of the Littlest Hero's project!

Ok onto the small victory...............

I have always been very hesitant about "bragging" when she has fewer seizures, most times Joe and I call her seizures the monster as to not let her seizures hear us and come back with force. I have realized though we may not always have good days or even great days so I NEED to celebrate all of her victories, large and small.

Two days ago Emily had 4 seizures, the day before yesterday 3, and yesterday she had 1. Now that is not including her spasms that she still has almost every time she wakes up, but even those are getting weaker and weaker. I also realize that Emily has many more seizures than we actually see but still this is a huge improvement from 70+ seizures/day.

I do not know if Emily is just having a good day or if we are actually seeing an improvement in her seizure control. I would love to say the later but only time will tell. Thank you all so much for your prayers!!

Also, I would love to get shirts made for the Epilepsy walk for our team. If anyone knows of a cheap place please send me let me know. Thank you all for all of the support we have already gotten for the walk. Emily just may raise the most money!!!


  1. I choose to believe that Emmy is getting better! I know she will get better each and every day!
    Cant wait to hold and kiss her again!
    When you sign up for the walk, it asks you what size tshirt you want. I think you get the tshirts with a $25 donation.
    We'll check into it

  2. Yay for matter how small.

  3. That's so great! I hope the good days continue and that the seizures go away. Praying for all of you.