This girl!

This girl!

Friday, July 31, 2015

Finding something positive in the middle of the chaos

To pick up where I left off in my last post, Sophia's seizures and tremors are gone! It seems like her body just needed some time to assimilate the new doses and now the combination of the meds are doing their job with no obvious side effects. The seizures could come back at anytime but I promised myself I won't stress about it until it happens, if it does at all. I want to enjoy my beautiful girl when she does feel fine and laugh with her without wondering whether that moment is going to be interrupted by an episode.
But there's something else happening, Sophia has always had a hard time drinking liquids. I have bought all sorts of cups and sippy cups and the only one that works (kind of) is a 99 cents one from walmart. It has a straw and all I have to do is squeeze  the fluid in her mouth and she drinks it. But she has to drink very slowly, little squirts at a time otherwise she starts coughing so by the end of the day the total amount she takes is not great. Lately it seems like she is coughing more frequently and there are several problems that could result from that: apart from the obvious dehydration, there's the risk of aspiration resulting in pneumonia. Also constipation, Sophia has been doing very good as far as that but when she was not it was pretty bad. And finally, Sophia is at risk of developing kidney stones because she has calcifications in her kidneys (which we have been monitoring for the last two years and they stay stable). Now that we added this new medicine for her seizures, we increased that risk even more because one of its side effects is development of kidney stones. The solution? A lot of fluids. The nephrologist asked me to give Sophia at least three of the bottles she uses a day, but on a great day she drinks one! And that day I feel like I was in her face all day pushing the water down her throat. That doctor and her pediatrician recommended at some point in the past to put a feeding tube on Sophia's belly. I said "no" because I was determined and convinced that I could find the way to get Sophia to drink enough fluids to avoid constipation and the calcifications from becoming a problem. But now, with the increased risk and the coughing I had to give the feeding tube more consideration. I thought really hard about it and asked Sophia's teacher who has a lot of experience in this field and who I knew would not push me into taking any decision until I was ready, and she gave me a lot of good information and I realized that it's not as bad as I thought. I talked to Eric about what I had learned and we considered the advantages and what we would be avoiding and decided that it's what our daughter needs right now. I guess I was feeling like I had failed Sophia by not giving her enough water, but I realized that I did my best but it wasn't enough and she needs a little extra help. So we started the process and have an appointment with a doctor this Monday so we should have a plan soon.
It has been pretty stressful few weeks for us  between making sure that the seizures were under control and making the decision about the feeding tube and I was getting a little overwhelmed, but I decided that I needed to do something meaningful for Sophia, for us. Something to keep me from falling into a sad hole worrying about possible problems or wondering why my baby has to deal with all this. So I decided to register for a walk for epilepsy. It's my very first walk ever, it's also the first time I raise funds for any cause and I thought this one was a pretty good one to start. So next October I will be wearing purple and walking three miles and I will see the face of my daughter at the end smiling so proud of her mama.

I would walk thousands of miles to see this smile.

By the way, here is the link for my fundraising page in case you are interested in sponsoring me:


  1. Nata todas las decisiones que tomes pensando en el bienestar de Sofia, siempre serán la mejor opción. Se que este nuevo procedimiento les ayudara mucho tanto a ti como a ella.

    Un abrazo y mucha suerte en la caminata :)

    1. Tienes toda la razon amiga, Yo creo que es lo mejor para ella!