Friday, March 19, 2010

she's baaaack

Guess what! Oh I am sure everyone can guess by now,
we are back in the hospital.

She actually had a really great night when we came home, her last seizure was at 8pm and she did not have another one until 11am the next morning. Then she had 2 but they were under 5 min. each.

So fast forward a couple hours and BAM! It was over 3 hours worth of seizures. Emily is very talented and her seizures manifests themselves in a couple ways. One is her newest , twitching. And twitch she did. I gave her all the klonopin I could give her, she passed out for a few minutes and then started having big seizures (cloninc/tonic) We called EMS and they witnesses a few we are.

Around midnight she started again, with the twitching. This time she gets IV ativan (stronger than klonopin). She got than 3 times and IV dilantin and still her seizures(twitching) are not stopping. By the was this whole time she is not even falling asleep and should have been knocked out with the 1st IV ativan dose.
So they gave her diastat which is rectal valium and it seemed to have done the trick. She is not all the was asleep but resting for now. I am getting ready to try and sleep myself.

I just really wanted to lay in my bed and relax for a few days. We are just pretty down today. Kinda feeling a little defeated.

I am just so tired and for someone to help us they would pretty much have to live with us because Emily ,by no means, fits any mold. She changes day to day. Joe and I questioned each other all the time "Is this a seizure". So for someone to come from the outside to help would pretty much be impossible at this moment.

I am just really scared and want this all to stop. I hate it for Emily so much. Sometimes in between seizures she looks at me with the saddest eyes and I can't imagine what is going through her mind. I am her mommy, I am supposed to protect her and keep her from hurting! I have no control over this and it is killing me.


  1. Praying for her and for her mommy and daddy. Sounds like you could ALL use a little solace right now.


  2. Psalm 145:18 (New International Version)

    18 The LORD is near to all who call on him,
    to all who call on him in truth.
    Psalm 121:3 (New International Version)

    3 He will not let your foot slip—
    he who watches over you will not slumber;

    14 Wait for the LORD;
    be strong and take heart
    and wait for the LORD.

    Reading these has given me renewed strength and faith. I am giving my worried to Him and will wait for his healing.
    I love you all so much.
    As much as you are willing to help Emily, God is willing to help you, his children, as well.
    Grandma Mary

  3. Hang in there. When I heard you guys were going back to the hospital "yet again", I was so heartbroken. I had just watched the video of Emily laughing and was so happy that you all had got to go home and she was laughing and happy. My bubble burst. I was so unhappy. I was looking through some of my emails when I received one called, The entire Bible in just one page. There it was. I clicked on one of all of the highlighted passages and it read,
    'Wait patiently upon the Lord.'

    Psalm 145:18 (New International Version)

    18 The LORD is near to all who call on him,
    to all who call on him in truth.
    Grandma Mary

  4. I hate that she's in the hospital again! We love her and you all so much! My prayers continually I say, every minute or so it seems and the Lord does hear them for her! For she is our angel! Love ya all! Loretta and Terry!

  5. I hate you all are back in the hospital again! Hopefully Soon I will get to see the little angel. My prayers are constant, I pray for her all through the day and I will always. We love you all so much! Loretta and Terry

  6. I hate to hear that she is back in the hospital again!! Not that I don't enjoy having her as a patient but I was hoping she wouldn't need to be anywhere near the hospital anytime soon! Praying for all of you daily! Love Nurse Alisha

  7. hi , I just by pass to your web, I share same feeling and how hard it would be for this journery. My sister baby has IS and is now taking two medicine each days, each day also has different kind of spasam happen in different time.
    Did you try to seperate the medicine and let her to eat at different time. We tried this and result look better .
    WE pray for our baby !! Love Sam

  8. Erica please put her new diagnosis on her cause everyone at my church her I gave them this blog and they are gonna pray extra hard for her! Hope you all are home now! Let me know when I can see the baby! All my love and prayers Aunt Loretta!