Swimming Against The Current

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 ...

    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 ...

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 ...

    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 lov...

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....

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...

2012 brought me so many great things.  The biggest thing was my hand.  At the beginning of 2012, I opened my hand and it has pretty much been open since.  Some days I have tightness but after stretching it and working with it, the tendons are no longer shortened and I can use my hand like I could 4 years ago.  Its a great relief, especially with the baby coming.  My mom reminded me the other day how difficult it was to give Hailey a bath with one hand and with that wrist brace on.  This time it will be so much easier.  I had a hard time but I was so used to not having my hand that it was just normal for me.  My foot is still giving me a lot of problems.  Most days its pretty painful, especially if Im walking a lot or standing for long periods.  I try not to talk about it a lot or complain because there is nothing that can be done.   I am due 5 weeks from tomorrow so hopefully once Cody is born, I can have my settings changed a...