Waiting for the other shoe to fall...

I have put together a packet of information for the Neurologist this morning. Although I already know him because of Aiden, Sophie will be a new patient today. I have included all the tests she has had done in the last few months including the Biopsies (2), the Skeletal Survey, the CT of the Chest, MRI, PET Scan and the blood tests as well as a worksheet that outlines everything as a summary to what she has been going through. Sophie’s headache persists and mom said that when she was playing with my niece and nephew after school yesterday, she only lasted about 15 minutes and then she was too tired to do anything more. She does have an ear infection, but usually she has a higher energy level even with an ear infection, especially when it’s my niece and nephew.

I am also wondering something. We got the biopsy back from the dermatologist, but I am curious as to why their lab didn’t see the need to do the “slide staining” that the head and neck surgeon said was necessary to determine whether her skin rash was LCH or not. I have placed a call for the nurse just to ask. Her rash is still itchy and uncomfortable and the steroid creams we’ve been using are not helping whatsoever.

Clinically, we’ve been searching for treatment for this issue for 151 days. It’s frustrating and tiring, but I’m determined to find answers to help my daughter deal with this disease. I want to make sure that the biopsy site is clear of LCH material if there is any way to be sure. I want to make sure that they “nodule” isn’t something more that is still in her head and I hope we get an answer to that today.

I will update more in a little bit…. We’re looking for prayer right now and I am grateful for each and every one of you that are sending up a word of healing to the Big Guy right now.

I've sortof been waiting for the other shoe to fall... Either we'll be okay or we won't, but we'll get through it either way.

Thanks!

J