This girl!

This girl!

Thursday, May 28, 2015

How nice when things work out.

Sometimes I feel like I'm always expecting things go wrong for us or like everything is difficult for us, and when they do work out it almost feels unreal. Sophia's doctor prescribed a new medicine to pair with the one she was already taking for her seizures, you can read about why we had to add one here. We picked it up on Saturday and gave it to Sophia that night. She had two mild seizures that day, they weren't full blown seizures but definitely the strongest and longest she had had in the last two weeks. That showed me that the seizures were going to get worse very fast. I was scared because the doctor had two medicines she wanted to try but each one had their side effects, the first one tends to lower the platelets and Sophia's last blood work showed her platelet count is already below normal, so that medicine is out of the question. The second one could cause kidney stones and Sophia has calcifications in her kidneys already so I thought that medicine was not going to work either. The neurologist talked to Sophia's nephrologist and she says that Sophia's kidney function is good enough to try this med. I was surprised because I was expecting a "it's a no" from that doctor, and the alternative medicines to try had worse side effects and I didn't want to even think about.
So we started on Saturday night. I am so happy to be able to say that Sophia hasn't had any sign of seizure activity ever since! We were supposed to increase the dosage every week until we found the perfect one but I think once a day is all Sophia needs. I keep looking at her trying to find anything seizure like in her face, her arms, her legs or her eyes, and I can't find any suspicious movement. So it worked! She just needed a little help from this medicine and it worked from the very first day! It's been almost a week and it still feels hard to believe it was that easy, but it was. So now I can go to sleep without looking at her on the monitor to make sure she is ok every time I hear her moving. I can let her stand in front of her play kitchen without the fear that she is going to fall if she unstable from a seizure. She can use her walker again and go as fast as she usually goes. I can go back to enjoying all the amazing things she does everyday... at least until she needs a little adjustment in the meds again but we'll cross that bridge when we get there, just like we always do.

Watching the Memorial Day parade.
So cool!


  1. Mi Sophie es una hermosa guerrerita, cada vez su cuerpito reacciona de mejor manera y muestra que como ella tienen ganas de seguir adelante y seguir creciendo y sorprendiéndonos con su ternura y amor.

    Sé que para ti no deja de ser angustiante el tener que probar cada medicamento pero tengo fe de que cada día las cosas serán mas fáciles y así como este medicamento funciono en un solo intento, cada día las cosas serán más fáciles para ti y le dará a Sophie la seguridad que necesita para seguir creciendo.

    Les envío un fuerte abrazo.

  2. linda mi niña,cada vez el camino se muestra mejor.