Swimming Against The Current

I just don't understand why some things happen.  You know that saying, "everything happens for a reason?" Do you believe in that?  How true could that be?  What exactly is the reason for my dystonia?  For Cody's 22Q?  It's overwhelming and stressful and there are so many days I have anxiety and don't know if I can go on.  But you know that feeling when your child looks into your eyes and smiles?  Or when your toddler puts her arms around you and hugs you tighter than you thought she had the strength to do and says "I love you mommy".  These are the moments I live for and these are the kind of days I know I will never give up and I will do everything in my power to help myself, help my children and help my husband deal with us. I often worry I am not a good enough wife or mother.  I worry about what my kids think about me and I worry I am the reason for my children's problems.  Does Cody have 22Q because of something I did?  Or didn't do?  Or

When I was a child, I remember the feeling of there being marbles in my head.   I remember feeling like someone was in my head hammering.   I remember my stomach hurting constantly, and having the feeling of something in my throat all the time.   I coughed non-stop.   I remember going into the bathroom and standing on the toilet with the hot shower running so the steam could help my cough. I never wanted to go to school because my teachers got so annoyed with me “disrupting” their class with my cough.   As I got a little older, umpires at softball games would pull me off the field, Gym teachers would make me sit out of games they played.   I was tested for whooping cough three or four times.   At 12, I was told I was allergic to milk.   The cough got a little better after that.   At 18, I had my tonsils out.   At 22, I was diagnosed with dystonia.   No one will ever know which of these three things was the major reason but now, at 26 I hardly ever cough. I have been doing pretty

I am going to start off by saying my children are simply amazing.  Each and every day they make me smile, they make me laugh, they inspire me, and they make me want to be the best person I can be.  I spend a lot of time calling to make doctors appointments and bringing Cody to all of those appointments.  When we aren't going somewhere, usually someone is coming here.  Every Monday, Cody has early intervention to help with his development.  He is doing great.  Yesterday was his biggest improvement over a weeks time since he started!  He is doing so well holding his head up.  He really likes when hes on his belly on the boppy and we hold up a mirror and he spots himself, then he has the biggest smile like he just saw the cutest thing ever... which is very true!  He is now 13lbs 3 oz.  I never ever imagined being so worried about my childs weight.  I get so anxious when the nurse comes to weigh him to see if hes gained.  He had a little growth spurt and gained a pound in 2 weeks, whic

Hello.   It has been a tough couple of months and very busy so I have not had a chance to write.   At the end of March, Cody had an appointment with ENT.   They did a bedside scope in the office to see if they could see anything that would be causing him to be choking and coughing every time he ate and why he wasn’t gaining any weight.   They saw that Cody had a glottic web and this would explain why his cry was so hoarse sounding.   On April 3 rd , we went back to Boston for an appointment with cardiology and for Cody to have a swallow study to see if anything else was going on.   We saw the cardiologist and besides his poor weight gain, they were happy with what they saw.   They said he sounded good, he looked good and it’s safe to wait a little while longer before they decide if he needs to have open heart surgery.   This was a huge relief.        We were all happy with that appointment and moved on to the swallow study, expecting good results.   I began feeding Cody while they

    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

On the morning of February 3rd, I had a little cramping but nothing worse then I had been having.  I decided to go grocery shopping and get some things to eat during the superbowl.  While I was at market basket I started having contractions that I couldnt walk or talk through.  I had a few that were three minutes apart but they didnt seem that regular.   I text Ryan and said "today is the day" kind of joking around.  I finished shopping and headed home.  When I got home, I made buffalo chicken dip and sat down with Ryan and had some.  I didnt have a change in appetite or anything so I didnt really think I was in labor.  I started having more painful contractions that hurt more in my sides and back which made me think something might be starting.  The contractions I had before were just in my lower abdomen.  I started timing the contractions and they were about 8 minutes apart and before long I was on my hands and knees in pain.  I decided I should call the doctor to see what

These last few weeks have been the longest weeks of my entire life.  Ive never wanted anything more then to have this baby.  I know I am not due until Tuesday but I have been having braxton hicks contractions forever and they are starting to become painful.  My foot is really sore due to the extra weight on it when I walk.  My  belly is so big its so hard to bend over and clean and to stand for long periods to cook and to take care of Hailey.  Last Wednesday was my last day of work because I expected to go into labor this week.  It never happened and I ended up just sitting around waiting.  I tried going out a few times with Hailey to the mall and stuff to pass the time and to walk to try to get things moving but all it does it make me tired and Hailey cranky.  At my 37 week appointment I wasnt dilated at all, at 38 weeks I was 1 cm 50% effaced and yesterday at my 39 week appointment I was still only 1 cm 50% effaced.  The doctor said he doesnt think I will go into labor on my own so i