Swimming Against The Current

    It is one thing to go through life with medical problems and many surgeries but it is a totally different story watching your child go through it.   We had a follow up with the cardiologist at the beginning of March and we were there for 5 hours!   What a long day.   Cody had an EKG, an echocardiogram and a chest x-ray.   We were told that Cody had fluid on his lungs and needed to start on lasix.   I got the impression that this would help Cody eat better, gain weight better and overall feel better.   At this appointment Cody weighed 9lbs and was in the 28 th percentile.   They were very happy with his weight gain.        It has now been almost a month and Cody only weighs 9lbs 6oz and is only in the 7 th percentile.   He is gaining but it is very slow.   Last week, we followed up with the ENT.   They did another scope and we were told that he has a congenital glottic web.   This is what is causing him to have such a hoarse sounding cry.   Next week he is going in for a sw

I know I have been going off topic lately with my blog, which started out about dystonia but my family is just so much more fun to write about.   Anyway, here’s a little update about me. As you may have read in my previous posts, my foot has been stuck since I was about 23 weeks pregnant.   My neurologist didn’t want to change my DBS settings while pregnant because they didn’t know what the risks would be to the baby.   I sucked it up and now my baby is 6 weeks old and I still have not seen anyone!   I am trying to get in to see my doctor but he is on vacation all month.   He said I could see someone else in the office but I can’t get through to talk to anyone.   I have adjusted to my foot like this and found shoes I can wear but they are winter clogs and I have already had to buy a new pair because they were so worn out.   Once the warm weather comes, I would really like to wear flip flops!!   Other then my foot, I have had some issues with my jaw.   The right side of my fac

    For as long as I can remember, I have wanted to be a mother.   I watched my mom my entire life, admiring her and hoping that someday I would be half the mom she is.   I pictured myself with a lot kids, bringing them for walks and to the playground.   I pictured family trips to Disney World, to the beach and just to the mall.   I pictured my kids laughing and being best friends and growing up together in a perfect house with a perfect yard.   I pictured a perfect family.        When you think about being a parent, often times you don’t think about what comes along with it.   There is a lot more to being a mother then playing dress up.   When I found out I was pregnant for the first time, it was a big surprise.   I was living in Florida and didn’t have my family with me to help me plan for it.   Immediately, though I fell in love.   I fell in love when my belly started growing, more in love when I found out it was a girl and by the time I had a massive ball of baby, I was so i