Wednesday, February 27, 2008
So GREAT NEWS!
Emma went to the appointment today, she had never been to see what Charlotte endures & it was funny, Charlotte was pretty proud to show big sister how she puts her head in the stirrup for the slit lamp :) Emma asked a lot of questions on our way home which was helpful for me to explain arthritis in the eyes to her in a different way (since obviously she wasnt absorbing my explanations before). I asked her this time, "did that make sense to you?" and she asked follow up questions so I think she is starting to understand. I said, "Becaues I would like to write a book for you so you can share with your friends about Charlotte & what arthritis is & what it does. Did that make sense?" And then she was all excited about Mom maybe becoming an author. We will see!
Then Emma went off to her 1st day of Ballet 1. She was VERY serious about this class & thank goodness we had a new leotard to wear to feel confident in! She ran into Becca who is in JR. High & helps with the pre-ballet class. Becca said, "Emma did you move up? (big hug) Good for you! I will miss you!"
Emma said "I told Ellie 3 things for her to do so she can move up & be with me! "
1. Dont talk at the bar
2. Concentrate and...
3. Do the best you can
Emma is SEVEN. Sometimes she blows me away.
A. she wants younger sister to be in class with her &
B. ballet is serious stuff that she respects!
My parents return from their snow-bird trip on Friday. I have missed them, I am excited for them to be back & the girls are THRILLED! I am sure Marmee will be shocked by them all & we will hear "you grew two feet! look at your hair, Charlotte goes Potty?!?"
Ok yes! That one is true! we have been working hard on that for the last 2 weeks & we are doing great (at home! away is hard, she wants her smaller seat!). I still cant keep pants on her at home...
Ryan heads to Sacramento, then Phoenix for a big presentation with big whigs in his company. Its important for him, HOWEVER... the poor boy was in bed at 830 tonight with chills, aches & a sore throat. Are we not immune to the GUNK that 's been going around?!?!?!? I am popping the vitamin C & my hands are about to fall off from all the washing! Ellie has a special day at school tomorrow, but I am not sure she is 100% either, have to play her by ear tomorrow: sore throat, cough, but no fever until tonight (maybe), i havent officially checked, she just seemed hot & very tired, & took a bath to "get rid of my aches in my neck." Not a good sign....
When are my parents coming home again?!?!?!?!? :)
Friday, February 22, 2008
2. Ellie got a call from the bigs the next day to move into Emma's pre-ballet spot from her current Creative Dance class & is VERY proud as this gets her closer to her goal of being a "professional ballerina" when she grows up (along with a firefighter, a pilot, a traveler, a gymnast, a golfer... there's one more but I cant remember at the moment).
3. Charlotte has consecutively gone potty ALL WEEK. mind you, i cant keep clothes on the girl while we are at home, but that's all for the ease of hoppin' up on the potty (i guess... i hope). I do believe that i need to get her registered into a kinderdance class, she would sooo enjoy it. I found this CUTE leotard/tutu at FancyPants today - have to go back & get it for her 3rd birthday (in september, hope i can last that long...). These women make these tutu's that have vintage appliques on the front, they are amazingly beautiful!!!
It was a fabulous Friday! Ellie, Charlotte & I went to playgroup with Treehouse friends, went & picked up Lunch @ Artino's & delivered to Emma & then went to recess with her. I got to witness Ellie's first tetherball game, against her big sister too :) Everyone was very patient. Ellie got a tad frustrated she didnt know how the rules & was like "well whatever" after she lost to Emma, & went to the monkey bars. Emma's friends are SO sweet to Ellie & Charlotte when we come to play, they really enjoy it! Then today wrapped up our last class for each of the girls before they start their new classes next week!
I run the long run tomorrow & then head to the chiropractor for a few hours having some ME time with a massage then a crack from the dr. OH YUM it will feel soooo nice, i may have to run again in the afternoon, i am sure i will be feeling like a new girl! :) Today was another gorgeous day, the weatherfolks continue their lies... Ryan got out to fertilize & mow the yard, that's a TRUE sign of spring! The birds are back & my bulbs are popping up & I hope they make it up in time for an early Easter!
Friday, February 15, 2008
We are currently on week 6 of MTX & hopefully that has kicked in. We feel optimistic & we defnitely celebrate every step of the way, however we arent out of the woods yet according to our Pediatric Rheumatologist. Which is a good reality check, we cant think this is conquered, we take it slow, week by week & so far we have had positive appointments since the IV pulsing.
Ryan took our E & E skiing today & so I asked my FG1 (JRA Support Group co-leader) if she wanted to join me for the appt, she came & we talked over coffee afterwards for several hours. I love & appreciate her so much!
Here’s our medication regime & the tapering:
Charlotte is on eye drops every 2 hours (pred forte). Dr. Yu (our opthalmologists partner while Dr. Goodman is on vaca) said to continue every two hours this next week, then drop down to every 3 hours.
2.15-2.22 Pred Forte Every 2 hours - Oral Prednisolone 3.5 ML
2.23-2.27 Pred Forte Every 3 hours - Oral Prednisolong 3 ML (drop .5 every week)
2.27 Our next Appt w/ Dr. Goodman
YAY! Great way to start the weekend!
PS - i havent heard the update on the skiing yet, Emma got whisked away to Ballet Class by Ryan. He had the camera & everyone said they had a great time. While putting Emma's hair in a bun she said "I had a GREAT time DUDE!" what?! Are you a snowboarder now?! Ryan siad the mountain was just gorgeous! Emma's friend birthday party was yesterday, I think I will put her to bed at 7pm tonight after a long two days (they were up at 615am to get to the mountain! Yes me too, getting them ready - oye!).
Thursday, February 14, 2008
Tuesday, February 12, 2008
Saturday, February 9, 2008
This afternoon I participated in the Washington State Caucus.
It wasnt at all what I expected. I expected about 10 old ladies & men gathered around in a quiet school library.
What I walked into was complete chaos, mass numbers, hot, overcrowded, unorganized craze in a school cafeteria. I saw people I knew, other parents from our school, neighbors, educators. I should have known it would be crazy when the night before I get an email from the WA STATE DEMS saying "Our phones here at State Party headquarters are ringing off the hook, and our press director has been swamped by calls from the media. We know this: blah blah blah... The february 19th primary does not count (the ballot we sent in last week) in selecting delegates. If you want your vote to count, you must caucus."
So the ballot = a big waste of money & it means...??? nothing? Someone has really got a lot of explaining to do. This was ALL over the national liberal radio on Friday on what a big cluster this was/is. Just a mess...
Once people knew where to go (to their precinct gathering) in the cafeteria, we gathered in our precinct around a few tables in the school cafeteria. There were probably 5 precincts represented. Each precinct counted their votes.
Our precinct had 80 votes (& there were bigger precincts, so I would guesstimate about 3-500 people voted today in just my area - pretty big turnout - impressive when you understand that the majority didnt "get it").
Here's how my precinct votes went down:
A. We had one republican who brought his cute little daughter Reagan! He voted for Obama!
B. Why would you come to this thing undecided? That didnt make any sense to me at all. So, there were people all around the undecided person trying to sway her becaues her vote truly did count. If she went to Obama, then Obama's group would have nine delegates, clinton 1.But as it went... Obama 8 delegates, Clinton 2 delegates.
C. Why would you keep your vote for an unviable candidate? We couldnt get the Edwards votes (husband/wife combo with WA STATE Cougar sweatshirts) to go to either side. People said "no , no that's ok, we respect your vote." WHAT?!?!?!?!?? It was a complete waste. I dont respect outright stupidity wrapped in selfishness. I love the "well our vote will show the party... blah blah blah." It shows NOTHING, its a WASTE of a vote. You just wasted your vote, it doesnt make any sense, no one is reading into anything, you think you are taking some heroic stand & in reality you are wasting a vote! And in turn... yes, it was selfish.
So of those 8 delegates moving on in the process of becoming a delegate from WA STATE to the DNC, I am one. Yay! One step forward in hopefully getting to the DNC. Its a long road but one step closer!
Obama took Washington in a BIG way tonight . I gave a little speech for my preinct & shared that we are in such an amazing place right now with two extremely qualifiied & distinguished candidates to choose from. But what our nation needs right now is some healing & we need a big world bandaid with our repuation. The perception of America is that we are the country who thinks "you are either with us or against us." We have a lot of mending to do from the cowboy's attitude of "my way or no way." In the PR picture, Obama is a healer who has the respect of men, women & varied ethnicities who can regain friendships in order to bring peace to our world. I think more of my vote, but i kept it pretty simple today. There were some very passionate speeches given - 2 for Hillary, given by women. They were moving! Truly respected, they were awesome!
I brought a sign home that says "OBAMA 08" and Emma immediately said, "Give me that, I am going to rip it into pieces! i can't believe you didnt vote for Hillary!" :) Oh i am so proud of her & her opinion! I cant wait to take her to the OBAMA rally this summer/fall, whenever they make their stop like Kerry did! Emma was 3 & Ellie was 1 when we attended their first rally! Uh-Mazing! Will be fun to do again!! I embrace her difference of opinion! It means she's thinking!! That's all I can wish for!
Wednesday, February 6, 2008
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?!). http://cathyandneal.blogspot.com/ My dad is a great writer when its not about sewer products. Yippee :)
Friday, February 1, 2008
Great news Dr. Kingsbury! Charlotte responded to treatments!
Both eyes showed Zero trace – nada - nothing!!!! I had her repeat that in different ways! Whew... One step forward.
Drops: Goodman dropped the topical eye drops to every other hour.
Oral: We did 5 ml’s this AM. She said its up to you how you want to handle the oral moving forward.
MTX: Next shot is Monday, that will be week 5. Remind me again when we can hopefully see it kick in – 6-8 weeks or months? (I thought weeks, Goodman thought months)
Next Eye Check Appointment:
She said we could come & see Julie Yu in 1.5 weeks, didn’t think that it would make much of a difference to come in a week versus a week & ½. However, we can’t get in for 2 weeks (the 15th - so a difference of 2 days - hopefully wont make a difference). Let me know if you think since we can’t make the 1.5 week work, & its 2 weeks, if Charlotte should see her next week & THEN the following week (every week instead of every other)? Did that make sense?
Ryan & I are SO happy she responded to the treatment. One step at a time! Now we shift the focus to weaning her off the steroids & keeping the inflammation at bay.
Whoo hoo! Good news! Let us know your thoughts! Best, Erika