End of a long week…

We received the call from Maddie’s doctor tonight that the EEG she had yesterday was abnormal and showed seizure activity. So she has already had her first dose of seizure medication and we will hopefully get to see a neurologist next week to find out what all this means. We knew some of the chemo we have been giving her (to try to save her life) causes brain damage in somewhere between 5-20% of kids.  We don’t know yet whether the damage we have done is permanent or if it will heal itself in time once we stop giving her the poisonous chemicals that caused it.

This has been the worst week since her diagnosis for me(Liz). She has had an average of 3-4 episodes per day and then has slept for hours after each one this week. She has had very little time where she has felt good each day and it is very hard to watch. With the fasting for anesthesia for the MRI, the night of sleep deprivation for the EEG, and the other sleep disturbances she has had this week because of sleeping off the seizures all day long, we are just plain exhausted here. So I wish my child was not having seizures, but I am relieved to know that medication may help and that we may be able to see a normal happy Maddie again sometime soon.

Brandon just arrived home for the weekend and they are playing happily at almost midnight right now. To see her play and be happy is well worth missing bedtime….

Please keep her in your prayers.

Love to everyone,

Liz, Brandon, and Maddie

Advertisements
This entry was posted in 1. Bookmark the permalink.

5 thoughts on “End of a long week…

  1. Hi Liz.
    I’m so sorry. You aren’t supposed to be dealing with this stuff now. Its maintenance! You are supposed to breath easy now! I hope the seizure medication works. Did they put her on Keppra? Abigail was on that for a bit and it didn’t seem to bother her at all. I hope cheerful Maddie returns soon with the medication.
    Much love, Sarah

  2. I am so sorry to hear that she continues to have seizures. I pray that the medicine will keep her from having them and it is something that will go away after she stops chemo.
    Mary Bandy

  3. Hi Liz,
    Please know that you, Maddie and Brandon are in my prayers.
    I am a friend of your cousin Nikki’s here in Charlotte.
    Your daughter is absolutely beautiful. I love the black and white photos.
    God Bless,
    Tammy Stalun

  4. Dear Maddie, I am wanted you to know that Logan and Autum, Amber and I pray for your recovery and health daily. You are in the prayers of our Church as well. We wish you a strong and healthy 2009. May God warm you with sunlight and comfort you in his arms, God Bless…

    Logan, Autumn, Amber and Shawn

  5. Liz,
    You are a fighter, just like Maddie. Keep on battling for her body and her heart. Maddie is in my prayers…and hopefully one day our girls can meet and wonder why there mothers are so protective of them when they are old and married!
    Love,
    Liz

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s