Skip to main content

Posts

Showing posts from August, 2010

On and on...

As our luck would have it, the hospital didn't order the correct contrast and other things they would need today for Spencer's testing so we only did part of it.  That was disappointing since he had been fasting in order to do all the things that were necessary.  He is fasting again tonight and will have the big test in the morning. 

     This afternoon, our GI., Dr. T. finally called me back.  He is located in Boise.  We talked about symptoms and Spencer's weight loss and he wanted us in Boise A.S.A.P. for a procedure to take several biopsies of his 'insides'.  I would tell you what parts of his insides but he rattled them off so fast I didn't get a chance to write it all down.  I told him of the tests tomorrow and was hoping maybe we could stay in town for the additional tests if he directed the physicians here. He thought that would be okay so we will be meeting with the surgeon on Friday, get the bloodwork done and surgery will take place next week.

     I…

Ohhhh....

Well, Spencer has continued to feel sick and after trying to get ahold of our GI most of last week without any luck, I took him down to our family doctor.  Looks like we will be spending a portion of the day at the hospital tomorrow to run tests and hopefully find a reason for his chronic nausea.  He has lost 4 lbs in 3 weeks.  Most of us would cheer for that kind of weight loss but it's not good for Spence.  We just barely got him above 100lbs.  So, we will continue to wait and hope.  Maybe have results by tomorrow night or Wednesday morning.

Darkest Side of Dawn

It will be 11 years this December, a week before Christmas that the kids were diagnosed through their symptoms with SDS.  I feel like we have come full circle.  We are back to where we started, sort of.  Waiting for test results, hoping it won't be as grim as the medical vocabulary sounds.  There are plenty of sleepless nights let me tell you!  Someone stopped by today and commented that the problems we are facing with the kids is nothing new.  Well, as I thought about this, it is new.  It's new for me.  11 years ago I could hardly believe what I was hearing.  I didn't want to believe what I was hearing.  Over the years, I have followed an e mail support group of SDS families and each time a child slipped away to the great world beyond or was confined to a wheelchair, I thought to myself, "I'm glad that's not my child.  My kids aren't going to be that sick, they have a mild case."  When you stare past the truth and as far into denial as you can …

A Story

Everyone has a story these days.  I have a story. My life has been full of stories.  Great stories.  Stories filled with humor, stories of dismay, one in a million kind of stories. To some, the story of my kids and their genetic disease is sad and sometimes to me it is sad.  There are times when the sadness of their story becomes more than a fleeting feeling but a rhythm that contracts each moment and provokes the tears I want so much to hide.  My half stitched heart breaks apart and I am left in a moment that fogs any view of the future.  Fear is gripping, paralyzing and suffocating. 

       I have been thinking a lot about my life.  It's hard. I have chosen not to give too many people access to my 'real' hard life, the parts of my life that hurt.  I've learned that people become overwhelmed when they hear my stories and the truth is, no one wants to hear that your struggling, that life is somehow a little more restless than normal.  Living with three children who ha…