Out of Denial…

After having a wonderful weekend living in denial of what is happening to Hannah, I got bounced back into reality quite a few times today.  I keep looking at her.  She has her breathing and eating issues as well as the really big abdomen from her spleen and liver being enlarged, but she is just such a lively, smiley, and happy little girl.  How can she be so sick??  And then I think that we are coming up on one month since the skin biopsy was done.  I started going through that list of tests other than Niemann Pick type C and Gaucher’s disease, and there were a few that also had enlarged spleens and livers as symptoms.  In a way, it gave me a bit of hope.  But most of those diseases also have quickly fatal outcomes, but not all.

Then, after a comment in my previous post by another visitor, I came across Nicole.  Her son Grey was diagnosed with Krabbes disease, which is also disease that is going to take him away from his loving family way too soon.  Even though Krabbes disease is on the list of diseases they are testing Hannah for, it doesn’t match her symptoms. 

But I read her posts, and I just started crying.  I keep thinking, that could be me.  I don’t want that to be me.  Please let them find out what is going on with Hannah and PLEASE GOD let it be something treatable!  I can handle taking care of a special needs child, but I can’t handle losing my baby girl before she even gets a chance to be a little girl.   I don’t know how the kids would handle it, how my husband would handle it, our family, our friends…how I would handle it.  Then I realize that in as much denial as I am in sometimes, this is just something that is eating me up inside.

I need answers.  I need them now.  When the hell am I going to get an answer about what is going on with Hannah.

We go to the pediatrician tomorrow for a checkup.  Another platelet check, check to see if her spleen and liver are growing again, talk about her developmental delays, etc.   Just a checkup.  He is also waiting this out with us.