Random pictures

I love pictures of him sleeping..

He loves this tunnel..

Playing on his new ABC rug..

Spiderman!!!

A sweet sleeping baby the night before he turns one

Help Needed

I lurk on several board, and several blogs. Today I ran across a horribly sad story that no parent should have to go through. Apparently this young couple gave birth to two beautiful little girls. Recently they were diagnosed with a horrible fatal disease. I am posting their story below, and if you can find it in your hearts to donate whatever you can donate to help these parents be able to spend every waking moment with their daughters without worrying about how they can afford to be off work, I will greatly appreciate it.


Both girls have been diagnosed with Werdnig-Hoffman disease. Here is the wikipedia article:
http://en.wikipedia.org/wiki/Werdnig-Hoffman_disease. It is a rare genetic disease that is untreatable. We are going in Monday to test our blood as well to see if it is something we passed down to them or if it was a mutation they experienced.

They have the most severe form. Their lungs are going to slowly give out b/c the muscles will not be able to help them breath anymore. They are both on feeding tubes, oxygen at night and monitors. They will never be able to sit up or hold their heads up b/c their muscles just can't take it. They might never talk b/c they have to choose between using their energy to breath or to do other things and they instinctively know to breath. Their brains are fine and they do so well interacting with us and each other. They love to be read to and have toys in front of them, they just can't reach them and hold on to them to play with them on their own.

Jake and I are going to have to decide how far we want to take this...some babies can make it longer if they're given a trach tube and have a machine breathing for them. At this point we're not sure that we want that kind of life for our sweet babies. We have a lawyer friend who is going to help us draw up living wills so we don't need to make those decisions under emotional distress. I am going to look into taking a leave of absence from work to be with them, but we're not sure if we can do that financially at this point.





to read more about them here's the link to the board she posts on.. http://community.thebump.com/cs/ks/forums/thread/9721385.aspx

he's walking

Grisham is walking! As much as I hate to see him growing up and getting more independent, I am so glad that he is walking..it means my back can finally get a rest. This kid is HEAVY!!! He started taking tiny steps a few days ago, but now he's going the distance. He has been walking more and more every day. He still hasn't walked the distance of the living room yet, but I don't think it will be long. I am so proud of him! He's so cute he walks like Frankenstein! I will take some video and post when I get a chance..it's so cute!

More pictures of the party

The party

We had a great birthday party for Grisham. At one time we counted over 42 people in our home. Where they all come from I couldn't even begin to tell you. I only invited 20!!! I guess the more the merrier. Grisham got loads of presents, kind of insane really at the amount of gifts this little man got. Here are some photos of the day, I have some video that I want to add as soon as I can figure out how. We had such a good time. Thanks to all that came, including the extra 22 people!

Happy 1st Birthday to my sweet baby boy..

One year ago today I heard Grisham's first cry..and with that first cry my life changed. I went from being frustrated and disappointed, to over flowing with love and passion for my child. I can't begin to explain how I feel about Grisham. When I think about him and how long it took me to get him here, there are no words that come to my mind that can explain the actual feelings I have. I am so completely blessed, my life is full, I have everything that I could possible want, and all this happened with his first cry. I made a promise to him when he was born that I would make sure no matter what, that he is cared for and loved. I will also go to the ends of the earth to make him happy. I will continue this promise for the rest of my life.

I love you my sweet baby boy, and I am proud to be called your Mother..I can only hope that the rest of your life will be as meaningful as your first year..

HAPPY BIRTHDAY..I love you..

Grisham's First Year

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