Thursday, September 30, 2010

FINALLY---- My first post after a year of procrastinating!

I have finally decided to take the plunge and start writing on my blog.  No better time than now as we go into October, which is National Down syndrome Awareness Month.  I have had this blog for the last two years, but I haven't done anything with it until now.  It doesn't seem possible that I would have let a year pass from my last post on carepages, but it has been.  If you want to read the posts I started when Katie was first born, you can find them on  kisses4kaitlyn is the name of the page.   Blogging was just starting to take off back then, but I was overwhelmed with the newness of Down syndrome, and I just decided to keep posting on carepages until things settled down for us.  I also struggled with really going public about our lives, but I want awareness to be raised about DS and that thought has become more prominent in this past year. 

I have been following many blogs in the last year and a half and I feel so lucky to have been able to share in their lives.  I want them to share in ours too. 

A little background history for those who have never read a post from me.
Katie was born 2 1/2 years ago.  We were surprised to find out that she had Down syndrome the day after her birth. It was mentioned to me during my 4th month of pregnancy when my AFP level came back low. I did have a quad screen with an elevated risk, but I put all of those thoughts out the window when I met the perinatalogist and had several level 2 ultrasounds that all came out normal.  We did a fetal echo which was inconclusive, and Katie was born before the next echo could be done.   I felt something was wrong late into that first night when she wouldn't take a bottle, but the words DS never crossed my mind that night.  My husband had seen the words "heart murmur" written on a piece of paper when they were assessing her earlier in the evening.  I was so worried about this because our other child has a heart condition also.  My husband and I were thinking that there is no way we can have two children with a heart defect!  That next morning, Easter morning, we heard the words Down syndrome and Tetralogy of Fallot and that they thought Kaitlyn had both of them.  Needless to say, the morning went very quickly as  she was prepped for a move to a different hospital 1 1/2 hours from us, and I was trying to get discharged from the hospital myself.  We stayed in the NICU for 6 weeks.  Finally we made it home with an oxygen tank and a heart monitor.  At 5 months of age, she had her open heart surgery.   After her recovery from that, I thought we could breathe a little easier.  At 8 months she was diagnosed with Infantile Spams--a form of seizures.  Of everything I had gone through with her, the seizures was the hardest thing for me to deal with.  I watched her stop developing.  I saw my baby so miserable from the steroids.  Thankfully, the seizures stopped after 4 months.   Since then, she has been stable.  We do all the things other families do who have a special needs child.  We live and we learn.  Most important, we love.  We love them no differently than anyone else in our lives.  (hence the name of my blog)  Yes, my daughter may have 47 chromosomes, but she is a beautiful little girl who ultimately has the same needs as everyone else born of this world.  I want this blog to show that life may be different than what you expected, but it is one worth living and loving for.  I am truly blessed.