This girl!

This girl!

Thursday, January 21, 2016

Trying to get back to "normal"

Hello, it's been a while since I last wrote a post but here I am. I left off when Sophia was finally able to go back to school after a few weeks of being drowsy from all the new seizure medications. She was back to the routine and I was ready to deal with the sadness and stress those weeks left on my shoulders and we were going to go back to our "normal,"  Well, we haven't gotten there yet.
Sophia had a couple of good days at school and still needing naps at home and sleeping all night. The medications seemed to be working fine, she was still sleepy at times but nothing we couldn't handle. Then she started with this very dry cough waking her up at night wheezing, we gave her nebulizer treatments but then she had low fevers so the doctor gave her antibiotics. When she finally was getting better and trying to get back to the routine, she got a bad ear infection and since we just had finished a round of antibiotics,  had to start a stronger kind which caused diarrhea. My poor baby had a nasty diaper rash and as if that was not enough, she also got a yeast infection. It was painful for me to see her like that, I can't imagine how painful and uncomfortable it was for her to have it. That took several weeks to clear up but it finally did. Sophia was being more awake, not taking as many naps and everything seemed to start getting better.
No such luck.
For the last two weeks Sophia has been waking up very early. I try to get her back to sleep, sometimes she does and many others she doesn't. When she does go back to sleep next to me or when she takes a nap in the afternoon, I noticed Sophia having short seizures. Seizures! Again!
I understand my daughter has epilepsy and always will. I know that. I know she will always needs medication to control it and I am ok with that. What I am not ok with, is the fact that we don't seem to find the medication that would control it longer than just a few weeks. I am also not ok with adding more medications and dealing with the side effects. I am not ok with having EEGs and seeing my little girl go through the pain and discomfort of putting on and taking off of the leads. But, I have to be ok with all of it. I need to keep until we find the right medication and the right dosage that will control the seizures for a significant amount of time. I want to get excited that Sophia wants to walk everywhere using her walker or holding our hands, I want to enjoy the fact that she is interested in getting potty trained and has succeeded a handful of times. I want to go back to our "normal" and I want it for a period of time longer than a week. Is that too much to ask?
So here we are, already increasing the dosage of one of the three medications we started in November and waiting to be schedule for an ambulatory EEG to see how Sophia is doing at night. And here I am, trying to stay positive and trying to not let this condition get the best of Sophia, of me, of us.


  1. You are one of the strongest people I have ever been acquainted with, Natalia, but it's okay to admit that sometimes, all this is too much and beats you down. I am so pleased to see that Sophia is enjoying walking around with her walker and even by holding your hands, and how exciting that she is taking steps towards potty training! Hang in there, my friend! Praying for you all!

    1. Thank you so much Dyanne! Your words means so much to me!

  2. Mi Nata Querida:

    Que difícil debe ser para ti, pero es realmente de admirar tu entereza para saber sortear cada cosa, si pudiera sabes que estaría allí contigo dándote alientos y las fuerzas necesarias para seguir; pero se que las sientes y que mi amor y mi fuerza a pesar de las miles de circunstancias adversas están contigo , te envío mi energía y quiero que sepas que así sea desde lejos siempre siempre podrás contar conmigo.

    Un beso