Saturday, June 15, 2013

12th Annual Hayhurst Kids Triathlon

Today was the 12th Annual Hayhurst Kids Triathlon benefitting CARRA!
The Childhood Arthritis and Rheumatology Research Alliance (CARRA) is a North American organization of more than 380 pediatric rheumatologists and researchers who are working together to find treatments for juvenile arthritis and other diseases of the joints, muscles, and bones in children.

Mission Statement

The mission of the alliance is to prevent, treat, and cure rheumatic diseases in children and adolescents through fostering, facilitating, and conducting high-quality research.

Vision

For all children with rheumatic diseases, CARRA will:
  • Perform clinical trials to define optimal care
  • Conduct research that will translate to prevention, better treatment, and a cure
  • Investigate methods to improve the quality of life for children
  • Promote a culture in which all affected children will be able to participate in research protocols
Charlotte is finishing first grade!  She's still having a shot a week of Methotrexate & every other week shot of Humira.  Her eyes & joints are seeing NO inflammation!  Her big sisters were GREAT cheerleaders & participants today!!

Wednesday, February 20, 2013

it's all good!

Charlotte's eyes are doing GREAT!  One cell is hanging out in her left eye but that's ok.  He can stay!  She's doing good on her Humira & Methotrexate because its working for her.  All is good for her! So she's staying busy getting stitches in her chin from slipping on the bars at school....
 Seeing the zoolights with her sisters & friends at the Oregon Zoo....
 Skiing on the weekends....
 Beating up on her sisters...
 Reading to her dog...
And staying HEALTHY!!!!  There have no bugs that have hit our house & its currently February 20th - KNOCK ON WOOD :) :)  

Monday, December 10, 2012

Stationery card

Be Bright Christmas Card
View the entire collection of cards.
Our thank you card to the Tottie's Team Arthritis Foundation Jingle Bell Run participants.  We are so thankful for our team!  They know how to jingle their bells and welcome the holiday season with healthy appreciation and love!

Friday, November 2, 2012

1st Grade Parent Teacher Conference


Dear Charlotte, 
Today your Daddy & I met with your teacher for your first grade parent teacher conference.  We saw samples of your writing, your penmanship & your math notebook.  Daddy & I were so impressed by your counting of twos, fives, and 10's and your ability to count backwards from 120!  We're going to keep practicing those numbers at home, since most of your homework has to do with sentence structure & reading, we think you like to work on numbers more & we are excited to help you do that.

Your teacher, Mrs. Little loves your leadership in her class.  She says you love to share, you love to be in front of the class leading mystery can or telling a story.  I have to admit, I was surprised.  Just last year you were still hiding behind my legs and didn't like the attention too much.  Now you are confident in front of your first grade class & love showing responsibility.

An example of your leadership was when you started showing Jackson how to have eye drops put in his eye.  You have been having to go to the nurses office to do your eye drops for the Uveitis flare up and finally taught yourself how to give your own eye drop because you were inconvenienced by having to go to the nurses office.  When Jackson started to do eye drops once a day, he cried, even screamed.  They had you come down to the office to show him that it was no big deal.  You took him down to the nurse's for the next week until he got the hang of it.  That was very sweet of you & showed great leadership & empathy!

When I asked you what your goals were for first grade you told me, "To get all 4's (the highest grade you can), to make a lot of friends & to earn more Penguin Pride tickets."  Those tickets are awarded to boys & girls that are showing good leadership & manners.  You have gotten at least 8 so far & its only November.  We are so proud of you!

And like your sisters before you and your Momma, I admit it, your teacher would like you to work on the amount of socializing.  Ahhh… the downfall of us outgoing girls.  Always criticized for our socializing.  Lucky for you, being the baby of the family, we are used to this plea by the teacher & instead of instantly thinking "UGH our child!! She's FAILING!" we now just smile when we hear this "concern."  If you are unable to manage your socializing at appropriate times, it will work itself out in the form of consequences at school.  You'll learn.  You will learn how to use your strength for good.  It will happen.  

It was a wonderful conference, Charlotte.  Your eagerness to learn is clear every day.  You would much rather sit at the kitchen table & have me challenge you with math problems than go play.  You love to play school with your friends & dolls and the joy of learning is FUN for you!  Your favorite subject to read about is animals & I'm sure you've brought home every issue of "Your Big Backyard" that the classroom has.  This hasn't gone unnoticed by your teacher.  She wants to switch up your reading a bit here soon, but has found humor in your love with these magazines.  I love how you share facts about animals after you're done reading them with great enthusiasm & big eyes!



When I ask you what you want to be when you grow up, you're telling me a "Horse Trainer."  
We are proud of you, first grader! And look forward to this being a FUN & growing year for you!

Wednesday, October 17, 2012

Hip Hip Humira!

Charlotte has started on Humira, a biologic drug home shot, given every 2 weeks and the eye appointment after the first injection, showed only 3-5 cells in her left eye.

THE CELLS HAVE LEFT THE BUILDING!!  Can we get a WHA WHAT!?! WHOO HOO!
Charlotte in the Columbia Gorge at an apple orchard field trip with first graders (#18 on the fruit loop)
Humira is working!  

Lets be real, its not a fun shot to give or to get.  It stings.  And we are doing a LOT of prep (thanks to the tips from mom's who have been doing this before me) with numbing cream & ice.  The nurse in the pediatric rheumatologists office gave the first shot & the second one was my first time.

Its a lot to inject (she takes the adult dose) so I had Charlotte do some deep breathing and on her exhale I would increase the give of the medicine.  Charlotte said that taking breaths and going slow worked for her & its nice to have her give feedback so she feels she's a part of this process.  She really does understand how important the medicines are and its not a choice.  What she does have control of is giving me advice in how to administer & I appreciate the feedback.
Last weekend at the Arthritis Foundation Jingle Bell Run kick-off party

Her front tooth is finally coming in after being out for 2 years.  It was bucked out & loosened up early in life - it was the first sign of her arthritis.  Routinely climbing into a chair, she slipped when her knee froze and bucked out her tooth.  She held it in for another two years.  But after missing it for two years, the new tooth is coming in & over the weekend I saw "something."  As the tooth came down more each day, I would send her upstairs to brush "harder! And with MORE toothpaste!"  Finally, I had to scratch this "thing" off.  It looked like a piece of popcorn.

Top big tooth. Looks like popcorn.
But it wasnt moving.  The yellow stain is  IN her tooth.  I took a picture, emailed the dentist who said it was the result of injury to the baby tooth.  Darn arthritis.  And not to panic, it can be hidden cosmetically when the entire tooth comes down.  Ugh.  But yay :)  It can be taken care of.

And the best news is that the medicine works! YAY!  And cosmetics can hide the tooth!  So all good things :)
Charlotte turned 7 & got her 1st Humira shot on her 7th birthday! 

This week I am "Living One Day for CARRA" Its a shopping I party with 7 vendors at the house all giving proceeeds to CARRA!  So fun!  With all the treats being gluten free & vegan! (no dairy,  no egg), I'm hoping that we surprise people with how tasty these healthy foods can be!  It will be fun!!
http://www.friendsofcarra.org 

Saturday, September 15, 2012

And Remicade works no more... no more...

And so after this summer of ups and downs with Charlotte's eyes... she has developed HACA's (Human antichimeric antibody) towards the Remicade.  Her body got smart, realized it was a rat protein & has rejected it.  Its working, no more, no more.  

What does that look like?  Her eye blew up.  "So many cells we cant count."  Wow.  She hasnt had that kind of eye appt since the initial diagnosis (age 2).

So after 4 years, we say so long to remicade.  You worked when you worked, but now you work no longer.  

Now there are discussions with the pediatric rheumatologist & the uveitis specialist as to what's next.  There are other drugs related to Remicade (called TNF Blockers) and some you may have heard of (PGA Pro Phil Mickelson uses Enbrel): such as Enbrel, Humira & Orencia.

The  next drug she jumps to, we want it to have a great track record of conquering uveitis (arthritis in the eyes).  Problem is... there arent a lot of studies out there.  

The good news is, they are all SHOTS.  Administered at home.  No more mini hospital in our house, nurse half days, being grumpy & missing school....
Scary side is, will her body accept this new route, how long till it kicks in and now its up to US! (was a tad reassuring to have a nurse at the house to talk things over with).  

We have a growing list of questions for both doctors & are contemplating going to Boston to discuss.  

Charlotte has been on HOURLY eye drops since the 2nd day of school (GET TO KNOW US!) and the staff has been nothing short of angelic!!  Her teacher, the nurse, the healthroom assistant, the secretaries, the principal... we couldn't ask for a more cohesive village helping our Tot when she's away from us.  So much love for our elementary school educators....

 And besides all this CRAZY'VILLE the 1st three weeks of school, Charlotte LOVES, loves, LOVES 1st grade!  She loves her teacher, she loves her new friends she's making, she loves seeing her friends from kinder & she LOVES reading!  So we are thankful for the Remicade when it worked.  And now.. on to a new time...