Saturday, November 6, 2010

off

I don't really want to blog right now but I am making myself.

Things have not been good lately.

Emily's seizures have picked up in spite of everything we are doing.

She has what we think are seizure-free days once or twice every week to two weeks but I am not sure that they are really seizure free.

The past few days have gotten really bad.  She is having so many seizures and we are giving her a lot of meds to TRY and slow them down but they are not working well anymore.

She is weaker than she has ever been and has not been herself in a few days.
She is twitchy and very seizurey looking.

We took her to the ped yesterday just to check labs and urine to make sure it's not something simple like an infection or off labs we are dealing with but they were normal.

I really don't want to go the hospital (especially during cold and flu season) we have oxygen and and a monitor at home and we have been using it lately. She has only needed oxygen once but we are thankful we had it.

We are taking her in to see the neuro the beginning of next week and hopefully we can figure something out.

I want my happy smiling baby back.

3 comments:

  1. I'm so sorry. :( I hate seizures. HATE them. Did I mention that I HATE them?? :(

    I am glad you have been able to keep her home and comfy. I hope the seizures slow down soon.

    ReplyDelete
  2. Grandma and Grandpa JohnsonNovember 8, 2010 at 6:28 AM

    WE WANT OUR SMILING HAPPY EMMY BACK!!! SEIZURES GO AWAY!!! LEAVE OUR BABY EMMY ALONE!!! IN THE NAME OF JESUS CHRIST, LEAVE HER!

    ReplyDelete
  3. we are all seizure-e too....sucks huh?

    hope your nuero can get you on a better path...tweak meds or something!

    hope you have a better week...hugs!

    ReplyDelete