Saturday, April 26, 2008

Eyes Headed in the Right Direction

Wednesday's eye appt for Charlotte revealed that just one injection of Remicade is helping her eyes head in the right direction. Charlotte's inflammation was down to 1 cell per eye, where as two weeks ago it was at a 2+.

At 2+ cells in each eye, Charlotte's meds looked like this:
Topical (eye drops)
Oral (prednisolone)
Methotrexate (weekly injection)

Two weeks later, starting remicade, & now at 1 cell per eye, her meds look like this:
Topical (every 3 hours)
IV Remicade
(dropped the oral TODAY)
We had our 2nd dose of Remicade (2 weeks after the 1st) on Friday & what a different girl Charlotte was. She was a true PROFESSIONAL!
Nurse Priscilla was SO super fast with the needle , & she said I tied her down well too - ok we are all learning - but it was lightening speed fast, Charlotte had a hard time keeping up the crying because there was nothing to cry about.
Check out the cute leg warmers doing their job AGAIN! These pictures show her "hooked up" - its pretty incognito, can you make out where the tube goes in? Pretty swift!
The benedryl DOES work on this girl & she was wiped, but stayed awake the whole time & just laid there on the couch watching her shows. Note to self, bring our own pillow, not as many toys needed, she'd rather watch & lay because she's so sleepy.

I thought we were supposed to go 0,2,4 weeks on the remicade meaning every two weeks?!?!? That was my interpretation of that math sentence, but evidently if you keep my "key" then its 0, 2, 6. So he said that if our trip to Boston to see Dr. Foster shows ZERO cells - drop the appt. on the 9th & bump it forward two more weeks (to be 4 weeks since last remicade) & if there ARE still traces, keep the appt, THEN we will go every 4 weeks.

So Charlotte rock & rolled the whole procedure like a total champion, we got home around 315 & decided to pick up Emma from school & go to the driving range w/ Charlotte & Emma (see pictures - Ellie was at Ballet w/ Marmee).
Different experience two weeks later & what attributed to it? I think starting earlier in the day for sure helped, it felt like it went faster, but we were still there for 4.5 hours. So i think starting earlier, we were able to get home in the afternoon & still have some "day" left. Learning how to tackle her down for the initial IV administer definitely helped too. At 2 1/2, Charlotte has learned to take all this experience with some grace, patience & a strength that I admire & love. She didn't lose the feisty, never fear, but she wasn't "angry" like I feel she was 2 weeks ago.

We are talking a lot to her about all of this, there are no surprises. She knew that Ellie got to go to "Marmee & Poppa's" and she had to go back to the hospital.

But she's in charge of her bag (some control there) & helps pick out her leg warmers (more control for Tot) & the girl gets whatever snack she wants (from what i brought). But cold, big, juicy grapes were a good treat & of course so is getting a new present each visit. We do love the LITTLE BITTY "calico critters". Have you seen those?! Crazy teeny, but the girls love them!
We also got her a "dr." kit & she's been administering shots to everyone who will endure her PRESSING deep into our arms :) Ok we get it - you hate your "shots" ! so i take it from her & tried to show her how to be QUICK! :) but then today I found her at my craft table taking two straight pins & having them talk, "I'm a shot, i am the sister shot. this will hurt, ok!" :) oye.
We head to Boston in 1 week, but first we have play dates, a first grade field trip & the State PTA Convention!

1 comment:

Lisa Milton said...

What great news. It sounds like she is adjusting like a champ. Hopefully, it is making her feel better too, all the way around.

So, you are headed up to Tacoma, huh? We have a pretty big 'delegate' going this time out from Illahee. Stephanie keeps threatening that we should go up there (she of bad mom and our current president) and shop all day, and go out with them at night.

So much for service...

Hope you have a great time.

See you soon.

(PS: She looks so cute in her leg warmers and headband.)