Buggy lost her first tooth

Finally after all that wiggling it finally worked....

Buggy lost her first tooth 

Field Trip

Buggy got to ride on Kentucky State University's Boat and DRIVE it down the middle of Kentuckt River

Way back when....

Bug always loved Starbucks Applecider..

Fabulous NEWS

Taylor "Bug" had her check up with the doctor today... He was very pleased and impressed at her determination and how well her body is adapting...

He has lowered her steroids down to 3 ml... Which is fantastic!!!

She is definitely looking more like remission!!! God is SO GOOD!!

Here she sits cuddling her Great Nanny...

New BIKES!!!

Pops and Nana took The Bug and Joe to Wally World for new bikes... 

They were both very excited and had to ride their bikes to the check out and then to the doors..

Buggy is struggled a bit at first but as she continued you could see her strength build.. We think the peddling with help rebuild strength in her leg muscles from the deterioration of the disease. 

She and Joe are happy with big smiles and joyous laughter..

Bug has a Buzzy

IAs I posted in an earlier blog, Bug is being weened off her steroids and in the beginning stages of remission... However she still must continue her chemo shots every week even DURING remission for two years... She's starting to lose some of the weight the steroids had put in her. This is causing her to experience more pain at the injection site... The doctors at Kosairs have given her what is called a Buzzy...

It's attached to a small ice pack and it vibrates as it numbs her injection site... It's rather cute ... A Bug for The Bug...

She's is still such a trooper!!! 

Again thank you all for helping spread awareness, your prayers and support.

We love you all 

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