Friday, August 13, 2010

Just here

Emily has been doing good that past couple days. Minimal seizures, no extra rescue meds and spasms are pretty low too. That is all good!

She is super sleepy though which is not good.  She sleeps through most, if not all, of her therapy which does little to nothing for her. It gives me an hour to talk with an adult (which is nice by the way) but for Emily all it does is stretch her and she has such low tone I am not sure she really even needs that.

We changed meds a couple times and I am working on her diet. She is still on the ketogenic diet but now she is on all food. What she does not eat I just put down her tube. It is much quicker than giving her 6 ounces of formula over an hour and she is not gassy at all either! I am learning things that seem to help, for instance it seems when she has a meal with higher protein she does not have as many seizures. So I have been trying to give her more of those meals the past two days. Seems to work, who knows with Emily though.

When she is awake she is pretty happy. We are still getting some smiles and occasionally some laughs out of her.

Joe's grandma and grandpa came in for a visit last weekend. Joe adores his grandparents and he tells me so many wonderful stories about her grandpa. They are such sweet people.  They only stayed for a couple hours to visit with us and Joe's mom, step-dad, brother and sister. It was nice having family visiting. Emily of course slept the whole thing but we got some great pictures.

 He has the best smile!

4 generations.


  1. Erica I love seeing these pictures of Joes' family. Wouldn't Grandma Jean love to be here with Emily. She is getting so tall. I love reading about Emily everyday. I may not be there in body, but I am always there in spirit. Love to you all.

  2. He does have a great smile. They look like two very proud great grandparents.

  3. Wonderful pictures! I ADORE my family!
    Grandma Mary

  4. I saw your comment on my friend Nathan's blog. I am an IS parent too and wanted to say "hi." Emily is beautiful. I wish you all the best I'm your quest for seizure freedom.