This weekend I was cleaning up the kitchen & organizing a bit ...
... and the big basket that has been sitting on the kitchen counter since November...
... that is full of meds for Charlotte...
I took it out of the kitchen & moved it upstairs to the medicine basket where they all live harmoniously together in ONE SPOT!
Why that's a big deal: Not too long ago, Charlotte's regimine was eye drops every hour, ointment @ night, dialation at night + add prednisolone...
All those meds were kept downstairs as WELL as upstairs (in a basket on the kitchen counter, so as not to forget & a duplicated basket in her room in case we were upstairs when the timer went off). That's how OFTEN we had to do those eye drops... duplicated meds!!! Oye vey $$$$
And now she's on MTX & monthly Remicade to control the inflammation in the eyes so our tapering of the pred forte is SOOOOOO drastically different than "back in the day", that I was able to clear a spot off the kitchen counter - no more meds, just reclaimed kitchen counter space! It truly was a big moment!!!
Our last eye appt (last week) revealed that the eyes are still in check - doing great on the current cocktail. We are not due back to our Ped. Ophthal. till the 1st week of September. Her suggestion was stay on pred forte 1x a day for the 4 weeks until we see her again.
After checking with Dr. Foster on that, he suggested a different path & we are going to go with this: "I suggest you go to every other day on the steroid drop for a couple of weeks; then stop it altogether so that when you see the ophthalmologist she will be on no steroid and the doctor will see whether or not she is quiet OFF ALL STEROID. Anyone can be quiet on steroids. She is where you want her when she's quiet off all steroids. If she's not quiet, then the recipe of other drugs is not yet "correct" and will need to be adjusted."
I AM EXCITED!!! I agree with this. This route feel right & so I quickly grabbed my calendar & started to fill in every other day for 2 weeks. THERE IS LIGHT!!! There is hope :) This is a BIG deal around here. So Saturday the 16th, Ryan's birthday celebration @ the family reunion, will be our last day of 1x Pred Forte. We celebrate! Then we wait... until September 3rd & cross our fingers, say a little prayer, say another one, think positively & say GOOD BYE to pred forte :)
On another note - The girls & I attended a BBQ on Sunday after taking Ryan to the airport. I brought the tote full of "TOTTIE's PRETTIES" and made some new friends of girls who loved the bands. I got to share the intentions of the headbands which is why I do it & it was so powerful for me to share these intimate details of Charlotte's journey with people I just met who were very interested & wanted to know more about her, about the organization that is working to find a cause & cure for childhood arthritis.
And I wonder. Will there come a day when I speak of Charlotte's journey without a quiver in my voice? Will I be able to share with people about the medications Charlotte is on without a choke in my throat?
I paused for a long time there & just shrugged my shoulders trying to answer my own question. I dont know. Maybe this is how I share our story - its emotional because its been hard to watch, its been hard to be a part of & its emotional because its brought out the most amazing love in people. Friends, Family & new people every day that are becoming aware that this disease affects children, how it affected our child & how we are helping her, completely fills my heart with hope. Awareness is key. Education is power. And I hope & feel that Charlotte's teaching is for a purpose.
This little fish of words to the left is a sum of our journey these last 10 months.
Look at how big CARRA is - that says HOPE is bigger than anything!