Wednesday, June 3, 2009

Happy/Sad Friday



I guess we will start with the sad part first. Today I picked up Evan's first prescription of Anti-seizure medication. I was very sad and angry that I had to do this, I am having a hard time accepting that Evan has had 2 seizures and will most likely have more and this is only the beginning of our journey in this area. I worried and worried about seizures for so long and then when I began accepting that it may happen and was comfortable that I would know what to do when it did I worried less and less. Of course now that is has happened I worry more, I get butterflies in my stomach whenever I am away from home or Evan is at school and my cell phone rings. Whenever Evan stares I always call his name to make sure he is not in a seizure. I watch him while he sleeps looking for any odd movement. I scour the internet for information on seizures and different types. This is just hard for me to handle but I know just like everything with his "terrible palsy" (borrowed this from another cpmom) I will learn to cope with this new development also. But I certainly do not have to like it and I will complain about it. I am sure it is weird to take a pic of the medication bottle but I am a scrapbooker and I am going to document this new phase in our lives.
Friday January 25, 2008 At 4:43 pm we got Evan's long awaited Dynavox Communication Device. We were so excited. Evan knows it is for him and it has been hard to program it when he is around. We started this process in July so we have been waiting a long time to get it.
You cannot tell in this picturebut Evan's Dynavox is blue with ablack carrying case to protect it. Wewill definitley need that. Look for Evan tobe "talking" up a storm the next time you see him.I will be going to Dynavox University on March 5thto learn how to make the device the most useful for Evan.And we will also be going to Sac State in the spring to get help as well.I want to be able to get the best use out of the device for Evan. I just know that his Dynavox will help him go far and will be the key to a whole new world for him. I cannot wait for the day when he is able to use it himself and I can really know what is going on in that cute little head of his.

No comments: