Hi there! My name is Violet, and welcome to my page!

I was born on January 3, 2012 with a chromosonal deletion. In the whole wide world, there are only 11 other people who have ever had my deletion, but I’m a bit special because I’m the only one with a complete deletion. My condition is so rare that doctor’s aren’t even sure what to call it.

I spent the first 20 days of my life in the NICU, and since then I have been in and out of the hospital a lot. My visits have included a lot of scary things like kidney swelling, heart conditions, urinary tract infections, fevers, and hearing loss. My right arm looks different than yours probably does: I only have my upper arm and one lower arm bone with just one finger on my right hand.  The doctors  did an MRI of my brain that shows I have a smaller head than most people, and that my brain didn’t grow completely (they call this ‘agenesis corpus collosum’).

Some of the scariest complications from my disease have been my seizures. When I was four months old, I went to have surgery on my kidney; a surgery that doctors thought would help stop my UTIs and might help fix other issues in the future. Just hours after my surgery I started having multiple seizures, one right after another. It was hard for the nurses to get IVs inserted but one night nurse was able to get the IV started and give me some seizure medications through it. But the medicine didn’t work. I kept having seizures over and over. The doctors transferred me to the Pediatric Intensive Care Unit and put me in an induced coma.

I was in a coma for seven days, and then it took another week before I could breathe on my own and leave the ICU. When my family got me home they realized that I had lost my head control, had started losing my hair, and had a hard time focusing on anything or making eye contact. I felt sleepy all the time. But slowly, I am starting to gain some of these skills back.

I am  acquiring quite the medicine cabinet, even though I’m still very young. The hardest part about the questions people ask about me, my seizures, and my condition is that none of us really know the answers. But what we do know is that I am surrounded by friends and family who love me very much, no matter what. And to them, I will always be a blessing.

*You can learn more about chromosonal deletions like mine by visiting Unique-The Rare Chromosome Disorder Support Group website. 

 

So since my last story update so much as happened to me as you can read through my mom’s messages.  I had been hospital free for almost a year, but in March I got RSV, it’s something that can really affect babies and even lead to hospitalizations because of low oxygen levels.  My oxygen was okay but I really lost my appetite.  One Saturday in March mom got really worried about me because I really didn’t want to eat anything and I hadn’t had any wet diapers.  She called her nurse friends and the doctors on call line and they came to the conclusion that I should go to the hospital.  I was admitted for dehydration.  Once again no one could get an IV in my body.  Mom fought really hard because of what happened last year in the hospital when so many people came in & out of my room trying to get an IV after my surgery.  Finally they decided just to put that feeding tube in my nose again.  I don’t like that tube in my nose!  Mom & dad talked with one of the doctors about a permanent feeding tube in my belly.  Mom knew it was time to do this because of this illness.  She also talked to a nice lady who’s daughter was admitted in the hospital and has a feeding tube.  Mom felt better about the whole thing after that.

My GI (Gastrointestinal) doctor was okay with doing the g-tube but I needed a safe place to be incase I started having seizures again after surgery.  It was decided that I would have to transfer clinics for my GI care for this feeding tube.  Fast forward a couple of months and I have surgery for my feeding tube.  I think mom was pretty nervous about surgery and if I would end up with seizures again.  I know it was a really hard time for my family last year when this happened.  I was pretty scared too!  But everything went well.  I really enjoy sleeping at the hospital, I know mom says she doesn’t get much sleep but I had fun!  The first night (the night before surgery) I hung out at the nurses station and got all kinds of cuddle time!  Mom says she got to sleep some too!  But there is something about the beds at the hospital that I really enjoy.  Mom says I slept really well, I was very content.  But we couldn’t take that home so I am back to my old tricks of not sleeping at night.  On average I sleep for a couple of hours, wake up & eat, play for a couple of hours – but most of the time I want someone in the room with me, I might go back to sleep & before I know it mom is waking me up to get ready for daycare.

Now that I have my feeding tube everyone says I am growing like a weed and mom thinks I might be a little happier & content too.  I sure do like to snuggle with her!  Dad thinks it’s something against him that I see her and calm down. Mom just laughs…I’m a sneaky little thing!  I love my family!  They are the best!  See you soon!  Hope you can make it to one of the wonderful events planned for me this year.  Check out my events page for details.  We can never say enough thanks for the people who come in & out of our lives and support us in so many ways.  But know that we appreciate everything done for us more than words can say…

Until next time,

Vi

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