This girl!

This girl!

Tuesday, November 17, 2015

Picking up the pieces

I have been kind of quiet lately and there's several reasons for it. We have been through a lot the last few months, lots of things have happened, some good and some not so good. First of all, I have to say that we had a fun summer! We went on a few road trips and Sophia ended up being amazing during the long rides, laughing, babbling a lot, sleeping very good at the hotels and enjoying herself, making our time together really wonderful. Sophia had lots of fun going to the beach, the zoo, going on long walks and to my surprise, she really likes bowling alleys which makes daddy very happy. It was a fun and busy summer and we have good memories and great pictures to show for it.
In my last post I talked about how Sophia had to have a feeding tube placed in her tummy. She had a peg tube in the beginning and then we switched to a low profile button. After the healing  process, a minor infection and the occasional granulation tissue, we can finally say that getting the feeding tube was one of the best decisions we could've done for our daughter. The amount of liquids we can get in her is significantly higher than what she could ever take by mouth...ever! The tube has been especially helpful when it comes to administering new medicines and new doses. I am so glad we did it!
Then, when everything seemed to calm down, Sophia started having a lot of what looked like tremors. Her neurologist added a new medicine because we had already reached the higher dose of the one she was on for about 4 years. But the tremors continued and so we kept increasing the dose of the new med. They became so bad that Sophia kept losing her balance when standing and also when sitting. The new medicine was obviously not helping and even making things worse. We did a 48 hour EEG back in July but it didn't really show anything. With the new symptoms, the doctor wanted to do another EEG but this time at the hospital. We were supposed to be there for 48 hours and we ended up staying for a week! After the first night, the doctor came in the room and said that Sophia's EEG looked really bad, especially at night. During the waking hours, the tremors that we were seeing were actually parts of seizures. At night things were a lot worse, as soon as she closed her eyes the epileptic activity in her brain began and went on non stop all night long. The doctor stopped one of the meds and added 2, she decided to be aggressive because the case was serious and we were already in the hospital where they could monitor her closely. There was no significant change in the EEG so we added one more medication to the list. The doctor also wanted to do a MRI to make sure we were not dealing with something else. Sophia was extremely drowsy sleeping all night and most of the day waking up just to eat. One morning, Sophia was napping and she looked so calm and peaceful that even with all the wires and the head wrap she looked like a beautiful angel laying there. I was looking at her when suddenly she started seizing, the nurses and doctors came running but the seizure had stopped. It lasted only 10 seconds, or so I thought! The neurologist came that night and told us that what I saw were the last 10 seconds of a 12 minute seizure she was having while asleep. 12 minutes!!... Asleep!! I couldn't wrap my mind around that! The doctor was concerned but confident we were on the right path but we needed to be a little more aggressive so we continued to adjust the doses until the EEG finally showed a significant change the doctor was comfortable with, Sophia was still very sleepy but we were able to come home and kept monitoring her closely here.
The MRI showed a few abnormalities that were discussed with a neurosurgeon, there's some tissue and some cysts where there should be none but fortunately they are not causing problems and we don't need to do anything about it right now and hopefully ever.
So we are home, Sophia is still not back 100% but definitely getting there. Still more sleepy and taking naps, which it's so not like her, but the doctor said it takes weeks for her body to get used to the medications. There's no more tremors and she is sitting up straight with no problem, we are going to repeat the EEG in a couple of weeks to make sure the meds are controlling the seizures at night, hopefully they are and hopefully this is it for a while.
Sophia is finally back to school after three weeks and slowly getting back to her routine. During those three weeks all my attention and energy were focused on getting Sophia on the right medication to control her seizures, but now that I am home I can feel the weight of those three weeks on my shoulders. Sophia is at school being happy and taken care of and I can finally deal with the sadness, stress and anger for what our precious daughter had to go through. Now, I can let myself feel what I need to feel and then pick up the pieces and be strong again, for Sophia, for my wonderful husband and for myself.


  1. We adore Sophia. She is a strong little girl, you must be very proud!! She has amazing parents to guide her and to advocate for her.. Lots of love to your family :)

  2. Sophia is such a strong little girl... She will get over this, I'm sure. All the best, always.

  3. Amiga Preciosa:

    Como te decía estos días la rabia y la impotencia que me genera el no poder estar allí es infinita, quisiera poder darte un abrazo o decirte que vayas a descansar mientras yo te ayudo, sé que físicamente no estoy allí pero tú más que nadie en el mundo sabes que mi corazón está al 200% todas las veces, tal vez desde aquí no logre hacer mucho pero en lo que pueda ayudarte siempre estaré allí.

    Como tú me dijiste a mi hay que permitirnos el desahogarnos, el sentir rabia, las lágrimas, el dolor y después de eso mirar nuevamente hacia el horizonte recoger cada pequeño pedacito de nuestro corazón y de nuestras almas y retomar las fuerzas para seguir adelante.

    Definitivamente la vida y los angelitos no pudieron haber elegido mejores padres para Sofía tu eres un ejemplo de mujer y de madre a seguir, tu entereza, tu coraje y cada una de las cosas que haces por tu bebe son dignas de admirar y valorar, al igual que el apoyo, el amor infinito y la entrega de Eric.

    Le pido al cielo y a los angelitos que te ayuden y que no te dejen decaer solo que te dejen sentir y saber sobrellevar las cosas como van llegando y así seguir adelante con nuestra hermosa princesa.

    Te amo con todo mi corazón amiguita hermosa y sabes que siempre estaré allí para ti y tu familia.

  4. Muchas gracias amiguita, no sabes lo importante que es para mi contar con tu apoyo. Gracias por estar ahi siempre!