Swimming Against The Current

Seven years ago, I was preparing myself to become a mother for the first time.  After going into labor twice, having it stopped and being put on bed rest for a couple weeks, Hailey decided by her due date she didn't actually want to come out yet.  I knew at that moment she would do all things on her own time.  On September 29, 2010 I was induced at 6am.  After 12 1/2 hours of labor, she made her appearance.  I fell in love immediately with her gorgeous, round pink face.  She had a head full of dark hair and beautiful blue sparling eyes.  Within Hailey's first year of life, she learned her first words ("hungry" being one of them), she learned to giggle, sit, crawl, stand, and walk.  We tried to take her pacifier away many times with no success.  We even cut it and by the end there nothing there but she still chewed on it.  At 2 1/2, Hailey decided to just throw it away and she didn't ask for it again.  This was one of the first things she did that made us realiz

September is Dystonia Awareness Month so I wanted to share a little about how my dystonia has recently been affecting me.  It's like a flash back to when I was pregnant with Cody.  My left foot got stuck and I was trapped the whole 9 months because I couldn't have my DBS settings changed.  My foot is exactly the same now.  I am having a very hard time walking and my whole left leg/foot is throbbing.  My left hand is also stuck and I am unable to open it and use it at all.  This hasn't happened in a long time.  Sometimes, I'll have a "spasm" here and there that usually gets better with time and rest.  This has been on going.  Last week it was my neck.  I checked my batteries for my DBS and they seem to be fine so I feel like it must be stress related.  I'm working on trying to relax and rest and get in to see my neurologist as soon as possible.  Thank goodness I have my beautiful children to give me strength to get through times like these.  Friday wi

This morning, I got a phone call from Cody's surgeon.  It took me by surprise because not many doctors will call you directly.  His first words were, "I've been thinking about Cody and talking with his team as we all looked through his images." He spoke with our genetics doctor and they both feel like Cody would not tolerate the palatal lift.  This was my biggest concern because he is so young and his mouth is so little.  They wanted us to desensitize his mouth to get him used to it and I just didn't think he would do well with it. He has a new plan.  He has a colleague that he works closely with who would help him do a different procedure.  He wants to work with a vascular surgeon to cut a small incision in his neck and move his carotid arteries over and pin them in place where they should be.  After this is done, he would go in through his mouth and do the pharyngeal flap.  This scares me more than anything we've ever done.  It's a huge decision.  Al

When Cody was a baby, he often times had food come out his nose.  He was stuffed up all the time, had ear infection after ear infection and things just didn't seem right.  As he got a little older, he never really cooed or made many noises and his speech was very delayed.  When he started to talk, we noticed his voice was very nasal sounding and he couldn't figure out how to get the air to come out his mouth but instead it would come out his nose.  We saw a doctor at Boston Children's Hospital when Cody was 2 to evaluate his palate and try to figure this out and help us make Cody healthier.  He wouldn't touch him, examine him or do anything to help us.  Our next step was to get a second opinion at Mass Eye and Ear.  Immediately, the ENT doctor there told us Cody had velopharyngeal insufficiency (VPI) and would need surgery pretty quickly to help improve his health and quality of life.  "VPI is a failure of the body's ability to temporarily close the commu

It's amazing how good life can be when you surround yourself with positive people.  No matter how low you are in life, it could be worse.  A friend recently helped me realize how to appreciate the things you have and no matter what situation you are in, there's always a solution and there's always a way to make it better.  I find myself looking for the kindness in people, the positive in every situation, and the good things in life.  This Wednesday Cody is having probably one of the biggest surgeries he will ever have.  I have been a nervous wreck since I scheduled it.  As a parent, we tend to over analyze every situation, google every symptom and surgery and hope for the best but prepare for the worst.  I have learned over the last few days that with a positive attitude, positive people by my side, and a prayer to god, everything will be just fine.  Cody is by far the strongest kid I have ever met and he WILL get through this.  He WILL be okay.  His speech will improve s