Sorry for the absence

I know it's been too long since my last post- 

Things within our family have been very chaotic these past two months. 

But we have 😊GREAT NEWS😩

Taylor (Bug) is currently being weened off her steroids... The doctors are very very hopeful that she is in the beginning of remission! Praise God and thank you all for your much needed prayers and support.

She is still out little warrior and we are so proud of her!!!

Please remember that Bug isn't the only child suffering and fighting this rare disease.... There are thousands and thousands throughout the States as well as across the world who aren't as fortunate as Bug- please keep them in your prayers...

Thank you and God Bless

Headed to the Specialist

Poor Bug... She's exhausted, on her way to the specialist for her JDM, she's worn out. The long drive knocked her out.

Worried about what's been going on inside her little body, but still hopeful for good news 

Relapse

Buggy is having a hard time since coming home from the JM convention

The rash has appeared once again on her face, she's having trouble with her neck muscles and leg mobility. She's been having trouble with "accidents" and complaining after voiding her bladder still feels like it has to go. We are fearful the disease is attacking her bladder muscles as well.  She was scheduled to go for a follow up next week for bloodworm to check the status of her internal organs, the call has been made to her specialist and we wait to see what he wants to do... Please be praying for her and her family 

JM Warriors singing The Fight Song

Floridia sun, sand and surf

Buggy enjoyed the beach, had tons of fun...

However even with sun screen and her hat, the sun was too much for her,

The rash was horrible on her skin and her legs ( muscles) ached as though a punishment for enjoying her day.

She keep a stiff upper lip and soldiered on as the mighty little warrior she is.

Made it safely

Going to meet other JM kids and their families