Swimming Against The Current

Its been a long time since the last time I wrote.  I have been enjoying my days with my children and taking in all the little things we often take for granted.  I am so lucky to be able to stay home with them and enjoy this time with them.  In March, I had my DBS battery replaced for the first time.  The surgery itself was not bad.  When I came out of anesthesia, I saw the Medtronic tech, who adjusted my settings.  My hand had been curled in again for some time and so it was tricky getting the settings right.  I was twitching a lot and having a lot of movement in my left shoulder.  They wanted to lower the settings after this surgery, to hopefully make the battery last a little longer this time.  The twitching in my left side did not stop until they put the settings back up to 9Volts again, where it was before the battery change.  I left the hospital that night, with my hand still curled in and feeling dizzy.  We thought this was...

How many of you know what 22Q is?  How many of you know what dystonia is?  Its likely that many of you only know these terms because you know me... or my son.  Do you know what they mean? What kinds of symptoms you get with them? Again, probably only because you either follow my blog, know my family, or have these things in your own family.  How many of you know what cancer is?  Probably every single one of you.  How many of you know what ALS is?  Anyone who has had faceook in the last month must know due to the ice bucket challenge. Dystonia is rare.  I had no idea what it was until I was diagnosed, about 7 years ago.  22Q is more common than you would think but still, I didn't know what it was until my son was diagnosed about 16 months ago.  Cancer is something we hear about, we see and we've learned about through awareness and knowing people affected.  It is so amazing how much support people get and how much awareness is out...

This morning I woke up to Cody tossing and turning and kicking me in the belly as he quietly whined.  It was 6am and I tried to get him to go back to sleep several times but he wasn't into it. I slowly went downstairs with him, trying to keep him happy and quiet as I got his feeding tube prepared for his first feed of the day, while trying not to wake up Hailey. Within 10 minutes, she was crying "mommy come get me" from upstairs.  I had to put Cody down, finish making his bottle and go get Hailey.  By this time, they were both crying hysterically. I brought Hailey downstairs and immediately she wanted to get dressed and have a "snack". I changed her, got her breakfast, finally set Cody's feed up and finally got to sit on the couch to watch the news.  "I want to watch frozen!" Hailey cried.  So, frozen it was at 6:30am for the 100th time in a week.  I managed to talk them into playing in the toy room by 8 and was ready to do my morning workout.  ...

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...

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, ...

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 h...

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 ...