Wednesday, May 16, 2012

Lucy's good dream

Here is an adorable video of Lucy from last night.  I wonder what she was dreaming about :).

Life As We Know It

Here are some updates on our lives.  Lucy had surgery on May 4 which you all may know.  She has hydrocyphallus.  A shunt was put in her head and they made an incision on the top of her right fontanelle, behind her right ear, and another by her belly button.  The biggest incision is on top of her head, they put the resevoir in there to help drain the spinal fluid.  It's on a medium high setting and the doctor can switch it with a special magnet if he needs to, modern technology=awesome.  The shunt will always stay in her, unless it fails and she needs it replaced.  We were lucky to have this caught in time before it damaged her brain.  We have no way of knowing why it happened, except it was most likely caused from her genetic anomoly.  I have read that a couple of kids had hydrocyphallus from a duplication they have on q28 so that pretty much solves my question.  Lucy is off and on oxygen through the day and on it through the night.  I luckily own a monitor to check her oxygen levels.  After so long after you rent it, I guess you end up owning it so that is nice.  After Lucy was out of surgery I met her at post of surgery area.  It's like a NICU with just curtains separating the patients.  Of course while I was there a child D Sat across from us and I saw about 20 doctors and Nurses rush to the child's bedside.  Luckily the child survived and they all cheered.  My heart was pounding out of my chest, while the nurse with Lucy tried to act like everything was ok so I wouldn't freak out.  Second time I have witnessed that, and I fear it won't be the last.  During our stay I made myself acquainted with the cafeteria and ate a bunch of treats.  They have an awesome cafeteria and I know I will be vegging out everytime I stay there.  I attended the sacrament meeting, it's just 30 minutes long.  As soon as I walked in the room I felt this overwhelming spirit.  It felt like the wind was getting knocked out of me, I began to cry while I was singing the opening hymn.  Watching children be wheeled in, and parents who are struggling.  It was testimony meeting, and before the bearing of testimonies one of the bishopric came up and spoke.  He talked about Elder Worthlin's talk he had given from years past.  About the horrible Friday with Jesus and how devasting it was.  And then came Sunday, the resurrection of Jesus.  He told us although we may be having our Friday, there will be a Sunday.  Of course I bawled and so did all the other people.  Listening to testimonies was inspiring.  One little boy kissed and hugged his mommy when she came back from bearing her testimony.  He hated seeing her sad, this little boy that looks about Dawson's age that was in a wheel chair.  I was really glad I could attend that meeting and how inspired I was by all the wonderful parents and children around me. 
I can't tell you how many years I will have Lucy, I can't tell you if she is mentally handicapped or not.  I can't tell you if she will ever walk or talk.  I just don't know the answers, only God knows.  I know this has been hard on my family, some have taken it even harder.  To you I say, Lucy came here for a reason and to help all of us.  Don't let this break you down, keep your head up, her Sunday will come and she will be healed.  As I type this Lucy is smiling in her sleep, she is a beautiful girl that has taught us so much and continues to teach us daily.  What makes us as a person is our Spirit.  Lucy won't be tempted by the outside world, and that is a good thing. 
I have so much to be greatful for, so many blessings have happened in my life.  I am surrounded by amazing people Family and Friends.  Some have come and gone and some have passed on to the other side.  I am greatful for all the many wonderful people in my life.  Life lessons are hard, but this life wasn't made easy for a reason, and it sucks but thats how it is.  I just hope to continue on striving to be better.  I thank you all for the love and support as always xoxo.