Thursday, March 31, 2011

Another Day At The Office

Just a littttttttle excited for some sun to show its face here in the Pacific NW. Charlotte, who was working on the computer, tried to show her love of all things Malibu (next up she needs the short shorts, rainbow socks & old school skates!).
Charlotte is still doing eye drops every 3 hours &
tomorrow she jumps down to one drop every 4 hours.
She sees the eye dr. next week. Remicade is on WEDDING DAY!!! April 29th, Charlotte will get remicade & watch Prince William & Catherine Middleton exchange vows. The other girls might mysteriously feel sick that day too, cough cough... its a monumental occasion not to be missed! Lucky Charlotte (wink).

Friday, March 18, 2011

Party is over, didn't you get the notice?

One blasted cell is hanging out. Which is NUTS!

Charlotte, two weeks ago had the approx 6 cells. She immediately started on steroid eye drops every two hours, and two days later she had her remicade treatment + methotrexate. So two weeks later you would have thought business had been taken care of - Party OVER! GETS. OUT!

But we got one lingerer.... which is nothing to write home about, you can live a lifetime with one lingering. Heck you can live a lifetime with 5 lingering.

HOWEVER.... as the momma, i just dont like that there's one lingering at all only because she pretty medicated right now to do the business, why is one still sticking around?

On the upside, she's seeing 20/20, so it's good, no damage.

Now she's still doing her steroid eye drops every 3 hours for the next two weeks. So we will still walk around with a timer & her preschool teacher Ms. Erin is the BEST, setting her timer & then giving us a sticky note as to when they were given. We also have a rockin' babysitter who's been giving them as well. So Charlotte has plenty of angels around her, very thankful!!

Charlotte is an eye drop champ. I have even been on the treadmill, Charlotte will hear the timer, bring the timer & the drops to the treadmill, where I hop off, give a drop, set the alarm, give it back to her & hop back on my run. :)

Hoping in 4 weeks, when we head back to the ophthalmologist, there are zERo cells! In two weeks we do drops every 4 hours.... and so it goes....

Thursday, March 3, 2011

Bump in the road

Back in the day, when Charlotte was first diagnosed of uveitis (arthritis in the eyes) in November of 2007, she was immediately put on eye drops every hour & I would carry a kitchen timer around with me everywhere I went (we were a sight at Nordstroms with the timer going off, me plopping Tot the toddler in a chair, prying her eye open, dropping the drop, then setting the timer and resuming our shopping). Charlotte weaned from those steroid drops (every hour went to every two, 3, till finally we were on one drop a day), and wrapped up that segment of her life in August of 2008 - 8 months of carrying that kitchen timer.
The Remicade + Mtx was the combo that held the uveitis so drops werent needed. We since have started the weaning process of stretching out intervals of Remicade infusions (Methotrexate is still given weekly in a shot), but not changing the amount of medicine.
Charlotte has anterior uveitis - which happens in the front of the eye around the iris (and is the most common uvieits), the congregation of white blood cells, only seen in a slit lamp & look like fireflies.

But Wednesdays eye appt showed a "bump in the road" (-Dr. Stephen Foster, MERSI) & Charlotte is back on topical steroid eye drops every two hours for the next 2 weeks (till we see ophthalmologist Dr. Goodman again). Her left eye showed 6-8 cells which is a 1+.

Dr. Foster's MERSI (Massachusetts Eye Research Institute) is in Boston

Dr. Foster suggested shortening our intervals between Remicade infusions back up (there went those brisk two years of weaning - joke!) to get the eyes under control. Now Charlotte's new timeline goes into the year 2013, so kindergarten & then 1st grade. Remicade is a 1/2 activity & we just added 6 months to the original plan (sigh).
Crossing our fingers that at the end of the two weeks, eyes are back in check and we continue down the road that now leads to January 2013.