Sunday, March 7, 2010

little bit if this and a little bit of that

Let's start this off with some cuteness!!

This is Emily's new thing, when she is getting mad or irritated with us or what we are doing she says "neen". I am pretty sure it's a warning, like if you don't stop what you are doing right now I am going to get mean. Or she could be telling us we are mean! Either way it's just so darn cute!!

Next, I would like to say that out in this massive blogging world I found a family that has a little boy named Collin, very cute I must add, who has infantile spasms too. They live near us and their journey has had quite a few similarities. He is on the diet Emily is getting ready to start. Click here to go check them out! Please pray for this family. I know how hard this is and every added prayer does help!

On to the seizure stuff. I have not updated on Emily's seizure activity over the weekend because we wanted to make sure what we tell everyone is actually what we are going to do.

On Friday evening Emily had one of her big seizures (aka scary) in her sleep. I was holding her and she never even woke up. If I was not holding her I don't think I would have even heard her. Not that we ever let her our of our sights. It was incredibly scary. It only lasted about 30 seconds, we did not even have to give her medicine. I was on the phone with the on call neurologist with in minutes. Luckily I got to talk with one of my favorite people, one of the nurse practitioners, and she knows Emily well. I told her what had happened and she agreed that it is time to start the Ketogentic diet and to place a g-tube. She is eating less and less by mouth everyday. Today she ate 5 ounces.

To do a much better job at explaining the ketogentic diet click here . This site has been very helpful to me.

Next, I know some of you don't know what a g-tube is. It is a feeding tube that goes directly into her stomach. On the outside all you see is a little "button".

Something similar to this. By the way I do not know who this is. Just googled it.

This was the only picture I could find on google of a smaller kid. My point is that it is not some huge tube coming out of her belly.

The nurse practitioner is going to call me on Monday evening to let me know the plans.

It will take probably close to a week stay in the hospital again. We will meet with the dietitian and she will lay out Emily's course as far as the diet goes. We have to slowly switch to the keto-cal formula and check her blood sugar among other levels to make sure her body is tolerating it. Some kids it works right away, others it may take a couple weeks. The goal with the diet is to take her off all of this medicine and obviously stop her seizures.

I just pray this works. So far none of the medicine is working 100% and one seizure is one seizure too many!


  1. I'm glad you put that pic up of the g-tube. Ricky asked me this morning about it & I told him I had no idea... glad its seems to be something that wont really get in the way for her...

    SOOO happy you found Collin's family! Gotta be encouraging to have people who are walking the road you are on with you...

    Love the video... her little voice is just so cute... she sounds like a little lamb! :)

  2. Thought the same thing... like a little lamb telling its momma that it is unhappy!!!!!

  3. Of course, she is trying very hard to say MaMaw Mary. :o)
    I hate to see her have that tube put in, but at this point, we have to try to get these horrible seizures to stop.
    May God Bless my little family.
    Mary Johnson