Wednesday, April 28, 2010

FRESH the Movie!

Last night I saw FRESH; a documentary that highlights: "New thinking about the way we are eating."I took Emma (9) & Ellie (7) who gasped, laughed, clapped & asked questions (in whispers). At the end we met the director who wanted to know what the girls thought & I shared with her:

"This is Ellie, who is 7. When you showed the conventional chicken farmer dumping out the baby chicks into their feed lots & showing how they lived as they grew up, she asked, "If they know that's not ok for the chicken, why do they still do it?"
Ana Joanes, the producer & director is Swiss, but studied here in America & became a filmmaker after getting her law degree from Columbia Law School (smart cookie).

Ana said, "Wow! What a thoughtful question! That's the point of it right? And if a 7 year old asks that, why aren't we all?!" And she thanked each of the girls for coming to see her movie. She was very kind, very sweet.

This movie was done in a way that showed conventional agriculture (spraying crops, showing industrial chicken farms) just to give you a taste but not ram it down your throat in a negative way, but to show the DIFFERENCE, focusing the majority of the film highlighting natural, sustainable farms like the pig farmer (Russ Kremer in MO) & Polyface farms (Joel Salatin in VA). Also highlighting a grocery store that sells mostly all local farms (an indoor farmers market really!) as well as urban farming by an ex-professional basketball player!

The girls GOT IT! And its giving us a real catapult for discussion. Watching Jamie Oliver's "Food Revolution" has helped spark the conversation too. On the car ride home I said, "Just want you girls to know that a deep amount of thought & time has gone into every meal you get. I know where our meat comes from, I am meeting the farmers at Saturday market who grew those carrots!" And they are getting it. They thanked me for taking them tonight!

The movie is now headed to SEATTLE for a few days but you can also have a screening at your home (see their website). I sent this on to our teachers & principal (who will be putting on our first school lunch: Farm to Table) because included on the website are:

Lesson Plans & Teacher Classroom Resources

Keep the discussions going, share what you know & what you buy (I just invested in a CSA & ordered my baby chicks from a local chicken farmer who will raise them for me!) & see the movie!! :)

Sunday, April 18, 2010

Anti-Inflammatory Diet

Dr. Weil’s Anti-Inflammatory Food Pyramid is a practical eating guide for a lifetime of optimum nutrition, not just for children with arthritis or other autoimmune diseases. Simple changes in how we eat can help counteract chronic inflammation, a root cause of many serious diseases, including:

Click this link for the pyramid - I am putting it on my frig as a reminder:

Wednesday, April 14, 2010


When we first moved to our town, I was at the pool, watching my girls swim when a mom, doing the same came up to me & pointed at my sweatshirt and inquired, "An Alpha Chi Omega Alumna? Where?"
That's how I met my friend Krista, who was also a fellow sorority sister, different school, different state. Krista has inspired me in many ways through her passion of organizing! She's featured regularly on a local morning tv show & shows us how to tackle projects. One of my faves revolved around Thanksgiving (her favorite holiday). She's full of great thoughts found here = love her business name: Organize in Style / the whole shebang!

Krista was diagnosed with breast cancer in March '10.
Technically: Invasive Ductal Carcinoma HERS2 positive
She is going through chemo & has chronicled the event here....
I am sharing this with you because she did an amazing job bringing us along for her chemo day. I wanted you to read it to see what its like.

Krista's chemo experience is a little different than Charlotte's (here). And, no Charlotte doesnt have cancer, she has arthritis, however the medication she takes & like many children with arthritis take to keep the inflammation away, Remicade, is a chemo drug & she is given it in the "Childrens Day Treatment Center" at the children's hospital.

Difference 1:
Children getting chemo get their own room for their entourage, and each room includes a tv & dvd player (yes it is nice, we bring a lot of stuff & the age range is very wide to little babies to teenagers - with the majority of patients having cancer).

Difference 2: Also, children with arthritis generally do not have a port, because their chemo is spaced out longer & intervals continue to lengthen over time.

Similar 1:
Charlotte has to go through the same routine that Krista does, take the vitals, then they order the meds, you wait & go through all the details to make sure its the right amount, the other meds are still the same, etc.

Similar 2:
Krista takes benedryl too! wow! I wouldn't have thought that, I knew it was for allergic reactions, but I kinda thought it was for kids too. Nope! Now we did give that up, it make Charlotte cuckoo! And once they figured she wasn't having an allergic reaction, we dropped it to keep her mentally in check.

Interesting similarities & differences for chemo for kids & adults. I love that Krista is taking us on her journey - thought you would appreciate it too! I am learning so much from her & can empathize her chemo days. You can get updates from Krista's blog by signing up here.

Tuesday, April 6, 2010

Celebrating Moving Forward

A dance in Boston Commons after an early morning Dr. appt getting a strategy & a clean bill of health!
Ever play I Spy? See if you can "I spy different parenting styles!"
As in, "Keep going!" vs. "No come back!" :)

If the movie doesn't work - try the link

Sunday, April 4, 2010

Back From Boston

S L O W and S T E A D Y
Dr. Foster met with us this past week & we discussed Charlotte's strategy of weaning after being flare free for 2 years on the two drugs that curbed the inflammation (Remicade & Methotrexate).

Charlotte has some constant variables that bump her out of the cookie cutter approach. I appreciate that. The arthritis was very, very stubborn at the beginning, & the approach taken of the chosen medications has taken care of the inflammation for 2 years. So now we go very slow with the weaning.
So slow that by my math.... she will be 6 1/2 by the time she is off all meds. Four years total of meds for the uveitis.... I hope this kicks it permanently to the curb.

Charlotte's variables are:
1. early onset (she was 2 when she was diagnosed at a 3+ in both eyes - that's the highest degree of inflammation)
2. ana positive (ana is a protein in the blood, you can still be ana + & NOT have arthritis, but it is an indicator of her arthritis)
3. hldra 5 gene (I would love to explain this one, but I cant. I will ask our ped. rheum at a later date).
When we started with these two meds it looked like this:
1. Methotrexate shot given at home, weekly - its an immune suppressant - the arthritis GO-TO drug that almost every child w/ arthritis we know, is on.
2. Remicade chemo infusions given at hospital, started at every 4 weeks, then stretched to 4 sessions at 5 weeks, then 4 sessions at 6 weeks.

So now with the weaning, we will:
a. stretch Remicade to every 8 weeks (4 sessions)
b. lower her Methotrexate dose by .10 mls
a. stretch Remicade to every 10 weeks (4 sessions)
b. lower her Methotrexate dose by .10 mls
a. stretch Remicade to every 12 weeks (4 sessions)
b. lower her Methotrexate dose by .10 mls
June 21, 2012 - have a HUGE PARTY!!!!
Slit lamp appts (at the ophthalmologists - the only way to detect arthritis in the eyes) continue for the next 7 years every 3 months. Hello 2017 & age 10!

The way Charlotte took control of that slit lamp at Dr. Foster's was impressive. Chin on the rest, forehead to the band, hold very still. He stepped back & said, "I cant believe she's 4, she acts like she's 7!" I said, "years of practice!" She's a pro...