Tuesday, June 5, 2012

Waiting for Edmond to live...


Some parents have used the term "bucket list" in regards to their child's blog and life threatening diagnosis, you may have heard of the blog, It was a very impactful blog that has been read around the world and the goal was to spread the word about SMA, Spinal Muscular Atrophy. Which it has been very successful doing, and I love the positive attitude of this family.

However.

It did cause me to stop and ponder the term "bucket list." Bucket list kind of implies that we are expecting or waiting for someone to die, or that the end result in mind is that we are doing all these things before we die. I sat and thought about it and I came to one single conclusion.... I am waiting but...

I am waiting for Edmond to live. That's what I wait for everyday and look forward to. That's the miracle I choose to believe in everyday. So that's my thought of the day... on to all the news about Edmond and there is plenty.

Edmond has responded well to lowering his dose of topamax. His jitters went away and his thirst and appetite returned now that he is on only one pill a day along with the keppra. His seizures lessened as well which was great. Saturday and Sunday we didn't see any, Monday was only two. He and I have a cold right now so that could lower his defenses against seizures when the body is weak do hoping he gets better fast.

Here is Edmond doing his vision therapy, he is learning how to focus on objects, with a black backdrop. We finally got Eden out of her crib and into her toddler bed, which meant Edmond is able to be in the crib and here is a picture of him all set up with his cool mobile that helps him learn and look while in his crib. 

I put the last picture of him in his jumper, because he looks adorable in it. 


Our fundraiser for Edmond went well. Adonis did a great job organizing it. I have been researching supportive wheelchair/strollers for Edmond and will be discussing a certain model with his neurologist tomorrow. I also found a bath chair I could borrow from a nonprofit called ablecloset, however it is only on a short term basis, but it will give us the opportunity to find out how different models are, I'm hoping anyways. Those are some ideas about how we can use the money donated to Edmond. Thanks to everyone who came out and had a great time with us. We had 44 players total.  Here's some pics ...