Sunday, August 22, 2010


I did not quite make it to the women of faith conference.

I did get to go shopping with the girls at an outlet mall and check into the hotel but that is as far as I got.

Joe took off work to stay with Emily and he called while I was shopping and told me she had been seizing and he had given her just about all the meds he could. I told him to give her the last dose and call the on-call neuro.

So I am sure you can guess the rest of the story. I made it home pretty quickly  and met him in the ER and they admitted her.

IV steroids and Valium did not do a lot to help but we did find out that her labs are off. Because of the zonegran and the ketogenic diet she has metabolic acidosis the short description is-----metabolic acidosis is a condition that occurs when the body produces too much acid or when the kidneys are not removing enough acid from the body. If unchecked, metabolic acidosis leads to acidemia, i.e., blood pH is low (less than 7.35) due to increased production of hydrogen by the body or the inability of the body to form bicarbonate (HCO3-) in the kidney.

We are now taking her off the zonegran, she has been on it for several months and have not seen enough improvement and we added sodium bicarb.
We also are going to retry topamax. The 1st time she tried it she stopped eating and at that point she did not have her g-tube.
On Friday she had over 166 seizures and yesterday she had 83. That is a 50% reduction.
We are also going to adjust her ketogenic diet to allow more protein and see if that helps with some more seizure control.

Joe did such a great job on Friday, checking into the ER with Emily is no small task! I am thankful to have such a hands on husband. I just hate that we feel so confined to home. I was so afraid and nervous to leave and all this did was make those fears worse. So no trips for momma any time soon!


  1. Believe me, I understand. I know how hard it is for a mom to leave her child for any amount of time, let alone one that needs constant attention. But, please believe, that God knows your heart and He is with Emmy and your family. Perhaps by her having to go to the hospital, it is the way that the condition was found. I truly believe there is a reason for everything. God will make it up to you for your trip. Please hang in there and know that my love and prayers are with you all daily, my precious family.
    Grandma Mary

  2. Maybe its not "no trips for momma" - maybe its "more trips for Emily" :)