Sunday, February 21, 2010

Too much

Some days are just too much and today is one of them.

I try to stay positive and be calm and strong but today I am none of those.

I am not wanting pity or anything, I am just venting.

Emily has starting a new seizure and its scary. I got a video of it but for some reason I can't upload any videos...grrr
It starts out as a small twitch then turns into her shaking a lot harder, much more recognizable as a real "seizure". It only last 15 seconds or so but it is terrifying.
The crazy this is though, when Emily is having a seizure she stills smiles and sometimes laughs. Every single doctor keeps saying she shouldn't be doing that but Emily is different from the rest. She is a princess!!

We gave her an extra dose of klonopin like we were told but it did not stop it. We called the on-call neurologist and it was the same Dr. that sent us to the ER on Wed so she knew us. Thank goodness.

We were getting ready to give her oral valium when she starting crying, that is a good sign. It means she is coming out of it. So for now we hold the valium because with all of the klonopin she is on it could suppress her respiratory system because the two meds are in the same category.

We did have to give her that extra dose of klonopin and she is already on such a high dose the dr. told me to make sure and watch her closely tonight. So.... no sleep for me.

I really try not to complain too much. We are so blessed and I don't want to look ungrateful for any of it.

Sometimes though its just too much. Sometimes I can't stop crying. Sometimes I get so mad because I have no one to be mad at. I can't hit seizures. There is nothing for me to get mad at but I am still so mad!

If you have ever had to deal with seizures than you know the feeling when your baby/child is having one and all you can do is watch. You know the damage that is happening and all of the potential danger that could happen.

It hurts me so deep that I feel sick sometimes.

I would take this from her a million times over if I could.

Please pray for us today. I really don't want to go back to the ER. We will if we have to but....

We start the sabril on Monday, I am holding out hope that this medicine will help her.


  1. Jeff and Mary JohnsonFebruary 21, 2010 at 10:27 AM

    I know that sometimes the mountain seems too hard to climb and all you want to do is sit down and cry. But you have to hang in there for all of our sake, mostly Baby Emmy. I know that God chose you and Joe specially to be Emmy's parents because He knew she would need very special parents. I just know this new med will work for her. Please hang in there until it arrives and she can start taking it. Jeff and I will be there in a little while and if you would like to take a nap, you can certainly sleep a while. We love you very much. See you in a bit.
    Mary and Jeff

  2. Whenever I find myself doubting the beauty in people, the so-called perseverance, and ability to maintain a love that endures, I think of you and your family. For every snide remark and loaded question, I remember your and Emily's battle, and thank the heavens that a mother's bond can be so infinite, and profound. I pray for Emily's triumph over this.

    Love, Miranda Schwartz.

  3. Oh Erica... my heart breaks for you...I can't imagine how your heart must hurt,or how many tears you have shed... but I do know how much you love Emily, and I know that God will provide you with the strength you need. We love you!

  4. Praying you had a peaceful night with the new meds!!! :)