Wednesday, February 6, 2008

What's next

I took a little hiatus from the computer for a few days. Sometimes its good to give this poor tower a break :) She's highly used for window shopping on 20 different sites at once. As I type, I have up: You Tube super bowl commercials, a NYTimes article on what kennedy's supported obama & which ones suppor hillary (Ah ha! didnt know that did you? Neither did i!), google reader, mini boden (time to order Emma's birthday shoes that she requested, chocolate brown w/ white polka dots. the girl loves shoes like her momma! Atta girl!).


What's Next for Charlotte Ann:
SO! We have two weeks to slowly (and very slowly) taper Charlotte off her steroids to see if the cells stay away.

Right now we are on AM oral prednisolone 5mls. Before last week's hospital visit we were on AM & PM dosages. Next week we will drop down our AM oral to 4 mls (see... very slow taper). we are still on eye drops every two hours.

Our next appt is on Friday the 15th. If she gets a clean bill of health, which all positive thoughts are focussed on that, then we continue to taper the steroids more. If there's a trace, we call Dr. Foster, book an appt in Boston & then start the case with insurance for Remicade.

ALL prayers & thoughts & mantra's & focus is on the positive continuation of Charlotte's eyes remaining in control during the tapering. Honestly, i am only focussed on the positives (mom & dad!) but do want to share the plan if needed.

I want to thank Leslie for sharing with me about St. Lucy - Patron saint of the eyes & eye diseases! I love that! Gina, I continue to be a Catholic learning magnet! I LOVE IT! Leslie gave me a wonderful prayer & I appreciate that!

Charlotte continues to have some crazy eating going on, so I blame the steroids - but only healthy choices! She is so classic two, that Emma & Ellie were NEVER like this, but Charlotte can only sit at the dinner table for so long before she has to be excused. And you better not clear her dishes, becuase she will come back & want that meal that was RIGHT THERE when she left!! even 30 minutes later!!! This morning I made my version of egg mcmuffins & she picked, got down, an hour later, "WHERES MY EGG MUFFIN!?" Seriously sweetheart! You are so precious :) :) :) hahaha!

She's funny though! She has been calling me "Barack O'Momma!" She thinks that's hillarious :) Then after the laughs, she starts inserting everyones names in where the BAMA should go! She's a comedy genius :) hahaha!

On Super Tuesday (which has nothing to do with us - yet my girls are schooled on its importance), Ellie declared her vote is going to Hillary because "Barack Obama is going to get his girls a dog if he moves to the white house & if they get a dog then there's going to be hair everywhere and the next person who lives there will have to have all this hair everywhere... they wont like that. I'm voting for Hillary." But what if Hillary has a dog & she's bringing it to the white house? "Well it wont be a puppy like the Obama's - and the puppy will chew up everything at the white house - it wont be good." OK then! I cant argue with that articulate reasoning!

Today Emma had 1/2 day (wednesdays) & so we got to utilize the afternoon writing out her valentines. LONG process of writing names, to, from... Tomorrow its Ellie's turn! "Love is patient..."

& I am sorry there are no pictures here, i have lost my camera in the bottom of my bag & need to go rescue it - all this writing with out some illustrations is BORING :) So I am going to wrap up with a nod to my parents blog that they are documenting their first ever LONG RV trip (which has been quite noticable in our house - we miss them terribly!). They are finally going to have some sun in Palm Springs this week - yay for them (can you hear my sarcasm as the rain settles in for the next 3 months?!). My dad is a great writer when its not about sewer products. Yippee :)

1 comment:

Lisa Milton said...

I found my way here. Yippee.

I'm sending up the prayers and happy vibes, your way.

Hope it helps...