This girl!

This girl!

Thursday, May 19, 2016

The amazing Sophia.

"A sneak peek into the unique world of the girl that amazes me every day", that's the description of this blog and Sophia proved that statement once more today. It has been a really rough few months for her dealing with lots of seizures and side effects from the medicines she is on. Sophia had to deal with many stays in the hospital for overnight EEGs, lots of changes in her medications doses, several stay home from school days and countless missed social events and celebrations. Her quality of life has been really affected by this disease and it was clear that we were not getting anywhere with medications and that a different path was much needed. Our doctor suggested one of two paths: a keto diet or a VNS implant. We did our research and decided for the latter. A VNS is a device similar to a pacemaker but for the brain, it goes on her chest just underneath the skin and it has a wire that goes to the vagus nerve on the neck. The implant stimulates the nerve and sends pulses to the brain to stop the electrical discharges causing the seizures. It's pretty safe and it could potentially reduce the amount and the frequency of the seizures, has almost no significant side effects other than a little cough and hoarseness which happen in the beginning. The only downside is that it doesn't start working right away but is for a good reason: it needs to be turned on and programmed little by little to cause the least amount of discomfort and studies show that the longer it takes the better results you get.
 Based on all this we decided the VNS is the right path to take but while we were waiting for the surgery day, Sophia's seizures were still uncontrollable; happening day and night, we needed something sooner and the doctor decided to put her on steroids. That was a treatment she didn't want to have to prescribe because of the side effects but the benefits definitely outweighed the risks.  Fortunately it worked! The hunger, the irritability and the mood change are there for sure but so is the being more awake and alert as well as decrease in the number of seizures. Sophia is definitely not back to being herself but it's so nice to see a glimpse of the resilient girl she is.
As I said, today she amazed me once more! Today was her VNS surgery and I had all kinds feelings about it. I was nervous, scared, hopeful, mad and anxious. Surgery means anesthesia and Sophia has had problems with nausea and low oxygen  in the past. It's supposed to be a day surgery but I was scared that she was going to have problems and we were going to have to stay and I was mad (still am a little bit) that my girl had to go through yet another procedure, mad that she has epilepsy hard to control and mad that this implant, although promising, is not a guaranteed fix and we still need to wait and hope that it at least helps some.
Yes, I was a nervous wreck but not Sophia. My sweet girl was as happy as always when the doctors took her away, when she woke up she did cry for a few minutes while she was waking up but then I saw the beautiful smile and the curiosity and the personality we all know. She ate very good with no signs of nausea and in no time we were discharged. She was very happy on the ride home and hearing her laugh in the back seat made me forget, at least for a while, what she has been through. At home she was very hungry which I was very happy to be able to fix and then she fell asleep in her abueliita's arms. It was almost a perfect day despite the surgery and it's all because of Sophia, people often tell me how strong I am but the real hero here is this girl! I am strong because she is strong, I am brave because she is brave and if she can put a smile on her face after having a day like today and keep on going then I can too.

7 comments:

  1. Sophia the Super Girl👑😘

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  2. Sophia the Super Girl👑😘

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  3. I hope this is the beginning of better times!

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  4. Mi Nata linda:

    Cuando veo a Sofia y su capacidad de seguir, a pesar de cada cosa ella siempre tiene su sonrisa, su mirada de ángel, sus caritas que enternecen a cualquiera, esa magia que inspira, sus ojitos arrolladores, su cabello de princesa, Sofie es un hermoso ser de luz, que esta con nosotros para enseñarnos que tan fuertes podemos llegar a ser.

    Tu bebe es una hermosa bendición.

    Las amo.

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