Friday

Posted by in Doctor, Julie, Kat, Life

Today I am taking Julie to Children’s Hospital to have a recently discovered heart murmur checked out by a cardiologist.

Julie has spent the last week telling everyone she knows and then immediately following it up with “don’t worry, I’m not worried.”

She is such a good girl. I’m looking forward to having a few hours alone with her. Will update later.

Read More

Diagnosis

Posted by in (Team) Rachel & Batten Disease

This is a repost from Rachel’s Mom’s blog @ www.mrskatvon.com

Title: 847pm

When you get a call at nearly 9pm from the head of Neurology you have to kind of figure that it is going to be bad news.  Dr Darras called this evening to let me know that Rachel’s Juvenile Batten Disease test came back positive with the standard DNA presentation.

For those who are new to the road I have been traveling with Rachel, Batten Disease is 100% fatal.  There is no cure, no real treatment… from what I have read up on it within the last few weeks all they can do is treat the symptoms.  I will leave you to google “Juvenile Batten Disease” because while I am ok right now  (I was pretty sure that she had something neuro-degenerative) I will not let myself think of the future right now.

And to anyone who reads this please take heart in the fact that you can’t say the wrong thing to me.  I’d much rather you stick your foot into your mouth than ignore me because you couldn’t come up with the right words.

The next step:  MRI on Thursday which will give us a good baseline and comparison from her other MRI 16 months ago.

John will be home in a few minutes so I have to prepare myself to tell him…

Read More