Wednesday, August 27, 2008

New Hi Lili Hi Lo Tshirt Design


This is our new special edition Hi Lili Hi Lo t-shirt! It was designed for Lili by the ever talented Raina Telgemeier, illustrator of the Baby-sitters Club Graphic Novels! It is a drawing of Stacey, a character in the books, who also has type 1 diabetes.
These will be made for the kids on our team only, or you can buy one for a $10 donation.
How cool is that!

Monday, July 21, 2008

Tuesday, May 20, 2008

A site for sore eyes


We have had a rough quarter. Lots of high numbers, lots of bounces and swings, it has been so frustrating for L. Well, we got a clue as to why at clinic last week. I have been so proud of her doing her own shots, but apparently she does them in the same place everytime and has made the sites so lumpy that she has become a bit insulin resistant.
Mystery solved, she is now struggling with lows while we try to adjust back her insulin doses.
By the way, this amazing Manga drawing was done by a 12 year old in taiwan for an awareness raising campaign. To see more check out this website
http://www.changingdiabetes.tw

Sunday, April 20, 2008

ONLINE AUCTION benefits JDRF!



Check out this great auction for the JDRF! I learned about it this weekend at the Oregon Diabetes Educators conference. I went to volunteer for our chapter of the JDRF and met some interesting people. An educator told me about this auction put on by best selling author Brenda Novak.

Happy Bidding!

Saturday, April 05, 2008

Hillary's Stem Cell Promise


April 11, 2007, Washington, DC - The Juvenile Diabetes Research Foundation, the world's largest charitable funder of type 1 diabetes research, praised today's historic vote in the U.S. Senate to expand federal funding for embryonic stem cell research with the passage of S. 5, the Stem Cell Research Enhancement Act of 2007.

This bill was Vetoed by President Bush. Twice.

Today I went to a town hall meeting hosted by Hillary Clinton. A woman asked her about her stance on stem cell research and she made a promise:

"When I am president I will sign the S.5 bill - it is time to end the war on science."

Hillary, I will vote for you if you will keep this promise.
This is the path to a cure.
Not just for Type 1, but for many diseases.

Here is a link to more about Hillary's views on science and stem cell research
www.hillaryclinton.com/news/release/view/?id=3566

This is an exerpt from her website:
Hillary will restore the federal government’s commitment to science by signing an Executive Order that Rescinds President Bush’s ban on ethical embryonic stem cell research and promotes stem cell research that complies with the highest ethical standards.

Here is a link to the history of the bill
www.govtrack.us/congress/bill.xpd?bill=s110-5

And finally, here is a link to what Obama has to say about Stem Cell Research. I also heard him speak recently and he expressed his committment to science as well.
My friend Julia sent me this link:
http://obama.senate.gov/speech/060717-statement_of_su/

Oregonians - lets make our votes count!

Friday, April 04, 2008

I must be dreaming...


I agreed to let L go to an all girls sleepover at her school tonight. There are 35 girls from the age of 7 to 12 and 5 adults. L is they only one with T1.

I must have been asleep when I said yes. Actually, I didn't say yes: Not officially. Her dad bought it as a gift for her at the school auction. "It will be fun for her," he assured me. What about me?

I spent the morning telling a good friend who is one of the chaperones everything I know about diabetes. I can't believe I have asked her to do this. She is being really sweet about the whole thing, but I am really stressed. This is the first time L will draw and inject her shots for dinner and breakfast by herself.

This is a big step for her. It has always been my goal to make sure she can enjoy the same things her friends can. This is a tough test. I am sure I wouldn't hesitate to let her go if she wasn't T1. That is the part that gets me.

She was going low (about 86) when we left, so we gave her a juice box. It was a half hour until dinner, an hour later then we usually have it. Oh, and they have cookies, and popcorn, and pizza, and ARRGH!

Well, she is there, so it is time for me to relax and enjoy my night off.

I promise to try.

Monday, March 31, 2008

The Ravioli Kid



I wrote this book. Yup...But I am not posting it because I feel the need to brag. I am proud of it, indeed, however I need to talk about the irony of this after what happened tonight.

L loves pasta - of course she does, or I would have never written a book called the Ravioli Kid. Tonight I bought some fresh organic ravioli for her dinner. She took one bite, after her insulin shot, of course, and refused to eat it because it had tomatoes in it.

The main character in the book is Stellina Pomodoro. Pomodoro in Italian is tomato. I can't believe I have a child who doesn't like tomatoes. It has been and is one of my favorite foods. More about that some other time.

For those of you familiar with Juvenile or Type 1 Diabetes, if you take an insulin shot, you HAVE to eat. If you don't eat you will go low, perhaps dangerously low. L has done this twice: once at home, once at camp. She had to have a "sugar shot" at camp (glucagon shot) She wasn't very happy about that. Nor was I.

I reminded her about that tonight, urged her to replace her carbs with another food choice, got mad. What else could I do? Have you ever tried to argue with a very drunk person and get their keys from them so they can't drive? That is what it is like to argue with a diabetic who is low.

But this is my child. First, I was angry because she was acting like a stubborn 8 year old, who I wanted send to bed with out dinner. However, that was not an option. The kid must eat, or, well, she could go into a diabetic coma. Nice...

She picked at her ravioli with big crocodile tears running down her cheeks. I had to leave the room and compose myself. Maybe she really didn't understand. I should take the time to teach her about her disease again, I thought. I went back into the kitchen and made her a peanut butter sandwich.

An hour later she says, "mommy, you are gonna be really mad, but I feel low." At least she noticed.

Sigh.

Friday, January 18, 2008

JDRF Hope Gala Save the Date!



Saturday, April 12th
The Governor Hotel
Portland, Oregon

Saturday, January 05, 2008

Test Strip Rant



I havn't posted a rant in a while, but here goes. I forgot to reorder test strips and realised we were down to one container of 25 strips. We usually order a 3 month supply that is mail order (another rant for another time) so getting them that way today, was out of the question. I called a local pharmacy and discovered you could buy them over the counter

FOR A DOLLAR EACH
WWWHHHAAATTT????

My daughter uses a minimum of 5 test strips a day. How is anyone supposed to afford this? I mean seriously - is this for real? I did a quick search on the internet for discount suppliers and didn't come up with much of anything.

I am in shock. I feel like I have been living in a bubble. What is my daughter going to do when or if she is not insured? What about everyone else.

Please relpy with words of wisdom. I need a shoulder here friends...

Friday, December 28, 2007

Type 1 Survival Kit day at the 100th Monkey Studio



We had a great day making bracelets at the 100th Monkey Studio today. We had so much fun designing the syringe caps and making them into beads! We made almost 50 bracelets!

Next step is to put the written piece together and bring it to the hospitals next week. I have templates for kids and parents to fill out. If you want to send your story and advice let me know and I will send you the template to fill out.

Thanks to everyone who came out today to support Type 1 diabetes!

Thursday, December 06, 2007

Diabetes Survival Guide


Calling all T1s, their parents, and their silblings

I am putting together a
Newly Diagnosed Survival Guide
to bring to families who are in the hospitals over the Winter Holiday.
So many kids are diagnosed this time of year I thought it would be a good thing to do.

I would like to include your blogs, stories, advice, recipes, anything you would like to share,

Thanks (in advance) for posting!

Wednesday, August 01, 2007

Diabetes ART SALE FUNDRAISER



Planter Girl, 2007, 16x20 framed $165, 10x8 unframed, $85
Dunes, 2007, 16x20 framed $165, 10x8 unframed, $85

Two of my photos which are in an art exhibit in Portland, OR Aug 3 - Sept 8th.
I am donating all my proceeds to the JDRF.

If you want to purchase them please call the
100th Monkey Studio
503-232-3457

or click on the link
www.the100thmonkeystudio.com

Tuesday, June 26, 2007

Thursday, June 14, 2007

Rock Against Diabetes 1



Rock Against Diabetes NW announces Tom's Ride 4 a Cure, a bicycle journey to spread awareness about Type 1 diabetes and raise funds for the Juvenile Diabetes Research Foundation. All funds raised go toward Tom Kilman's goal of $4,000, with which he will be able to represent Oregon in the JDRF Ride to Cure Diabetes in Whitefish, Mont., Sunday, Sept. 23.

Kilman, who is not a professional bicyclist, is doing the ride to help his son, Henry, who was diagnosed with Type 1 diabetes nearly three years ago, at the age of 2.

The ride is Thursday, July 12 through Monday, July 16. The five-day ride covers more than 330 miles. Kilman will hit the road in Scappoose and head north on U.S. Highway 30 to Astoria on the first day. After leaving Astoria, he will go south on U.S. Highway 101 to Lincoln City, then back up Highway 18 past Grand Ronde to Newberg, and finally from Newberg through Hillsboro, Beaverton and Portland and back up Highway 30 to Scappoose.

Anyone can visit the rest stops along the route to learn about Type 1 diabetes and offer support. For more information or to make donations visit
www.rockagainstdiabetes.net

Rock Against Diabetes NW is a nonprofit organization to raise money to fight juvenile diabetes. Photo courtesy the Kilman family and Rock Against Diabetes NW.
Tom's Ride 4 a Cure
Thursday, July 12 through Monday, July 16.

Starts in Scappoose, will pass through Astoria July 12, then to Lincoln City, Grand Ronde, Newberg, Hillsboro, Beaverton, Portland and back to Scappoose.

Tuesday, June 12, 2007

Stacy is Type 1, Part 2



Portland is probably the only city in the universe where you can ride an ariel tram to visit the doctor. This was what we did for L's clinic appointment recently. Clinics are nerve-racking enough. Add flying in the air several hundred feet above freeways, mountainsides, and houses, and you've got yourself a swell day planned.

All sarcasam aside, I bought the second graphic novel to give to L to read while we were at the clinic appointment and she was beside herself thrilled!

And thanks to all of you for your comments - you should check out the graphic novels illustrated by Raina Telgemeier. They are a bit updated from the 1980's original books, and the comic book format is cool.

I set up a link and you can buy it right from this blog! Happy Reading.

Sunday, May 13, 2007

No way Mom! Stacey is Type 1, too!



"Who is Stacey?" I ask half listening as I was driving L to school the other morning.
"She is one of the babysitters" she answers impatiently.
"What? You don't have a sitter named Stacey," I respond, suspiciously.
"No, Mom, you don't get it. Stacey is from the Baby-sitter's Club - you know, the book?"
Oh, yeah, the book we got from the library that is now at least 3 weeks overdue. I had forgotten about that.

"I'm going to see if they got the facts right," she continues as I am smiling to myself. That is so cool - a roll model in a book she likes with type 1!

If you have a tween type 1, check out these books. They are from a new line of "Graphix" which are more like comic books:
Stacey's Great Idea
The Truth about Stacey

http://www.scholastic.com/bscgraphix/about/

Monday, April 02, 2007

Magical Mystery Cure Stamps!



We have gotten some amazing items for our inspired item basket! One of the coolest in my oppinion is that we made stamps with the Magical Mystery Cure design I drew. You can make stamps with your artwork or photos at a few different places on the web - we did it at www.stamps.com.

Postage is going up to $.41 by the way!

Monday, March 19, 2007

Magical Mystery Cure



We are putting together and "Inspired Item" package for the JDRF gala auction inspired by Beatles songs!

So far we have
A silver heart braclet (St. Pepper's Lonley Heart Club Band)
The Beatles Anthology DVD Box Set
Ipod

Our wish list includes:
Gift certificate for coffee (So Tired)
Gift Certificate to a book store (Paperback Writer)
A Guitar (While my guitar gently weeps)
Roll Over Beethoven (Symphony tickets or piano lessons)
TIckets to Omsi (Yellow Submarine)
Tickets for Amtrack or Air travel (Day tripper)
Tickets to Oaks Park or Enchanted Forest (Ticket to Ride)
Note cards, stationary (Please Mr Postman)
A kite (...for the benefit of Mr Kite)
Diamonds (Lucy in the sky with diamonds

If you have an idea or can donate an item please let us know! Our deadline is April 6th

Sunday, March 11, 2007

JDRF Hope Gala


The 8th Annual Hope Gala
May 5, 2007
The Governor Hotel
Portland, Oregon
6 p.m.

Honoring Albert Menashe
2007 President of the Oregon State Bar

Special recognition to
Dr. Andrew Ahmann from
Oregon Health & Science University

Cocktail party and silent auction with music by Alfredo Muro Latin Ensemble
Presentation of the 2007 Living & Giving Award to Albert Menashe
Gourmet candlelit dinner and live auction full of limited one-of-a-kind items
Enjoy live music by the Swingline Cubs

For more information, sponsorship opportunities, or early reservations, please call the JDRF office at 503.643.1995

Interested in volunteering or joining a committee for the Gala?
Call JDRF at 503.643.1995 or email oregon-washington@jdrf.org

Thursday, February 22, 2007

A Burden with Every Bite


Balancing goldfish crackers, apples, and insulin shots.

A burden with every bite
Grappling with a child’s diabetes
By Louanne Moldovan
February 14, 2007

In our home, food wields great power. It nourishes, of course. It also instills fear, worry, hope, and dread. It must be handled with great care, as it is conscientiously counted, weighed, measured, and timed. One moment, it is approached with anxious urgency; another, with grateful relief. It requires occasional bargaining, negotiating, cajoling, and even pleading. Now, I am a grand swindler; next, a mad scientist.

These intense emotions reside in the act of feeding our nine-year-old daughter, Alex. Just after she turned five, Alex was diagnosed with Type 1 diabetes.

When Alex’s doctor pronounced her test results positive, her father, David, fell to the clinic floor. It was Christmas Eve, and the hospital stay remains in my memory as a surreal, sleepless, three-day boot camp in diabetes training. When we prepared to leave, the doctor likened our departure to going home with a newborn. But without the joy.

From her first spoonful of organic brown-rice cereal, Alex was raised on healthy, natural food. For her, the idea of treats invariably outweighs the amount she actually eats. Alex can enjoy the occasional ice cream, sometimes even with a cone. Her endocrinologist reminded us of the importance of letting her be a child.

For Alex, eating a treat might result in high blood sugar, but this is less harmful than the psychological and emotional toll its forbiddance could cause. I will always remember the first birthday party we attended after her diagnosis. I made sure her slice of cake was a small one. She stared at it in awe; then, with a quiet joy, she ate every crumb. To finish, she picked up the plate and licked off every shred of frosting.

Alex receives insulin injections for each meal and most snacks. We have to carefully calculate the number of carbohydrates in her food and then draw up the appropriate amount of insulin. This is where the total carbohydrate figure listed under a package’s nutrition facts is critical. Protein is a “free food,” and does not need to be counted.

Instead of “picky,” Alex prefers to call herself a “selective” eater. As a professed vegetarian — she is a big animal lover — her menu is somewhat limited. We routinely use a scale, measuring cups, and our tired brains to compute the number of carbs Alex will eat in her meal or snack.

But Alex, being a child, doesn’t always eat what is given her. If she doesn’t finish, we go into a repressed panic, offering any variety of potentially appealing carbs. This is surely one of those times where my more laissez-faire approach comes into play, as I suggest an (organic) cookie or half a piece of toast, while her dad proposes a chunk of banana or cup of milk. Only rarely does she wish she could eat more, but not enough to warrant getting another injection.

Restaurants, parties, holiday meals, or event vendors present special challenges, as we are reduced to guessing as closely as possible what the carbohydrate count might be in a certain food. This hasn’t gone very well for us; we usually wind up with frighteningly high blood sugars. Again, with my more lenient attitude I will try not to make a big deal about an extra piece of bread or drink of lemonade.

However, there are consequences to pay for even the slightest excess of carbs. When Alex has low blood sugar, she feels faint, weak, and hungry. When her blood sugar is high, it is as though another personality overtakes her. She becomes whiny, emotional, and inconsolable.

One day Alex told me, “Mommy, when I’m low, it’s in my body. But when I’m high, it’s in my feelings.”

Later, when I berate myself for my indulgence at Alex’s expense, a silent, uneasy concern over such long-range complications as blindness or heart, liver, or kidney disease looms in my mind.

The other night, when I was about to give Alex her sixth injection of the day, she looked up at me and said, with utter conviction, “Mommy, don’t give me a shot. Please don’t give me a shot.” She was not whining, she was not wailing. Soberly, simply, she made her plea. And she repeated it again, and again.

Our child would simply like to be able to grab an apple or a cracker and eat it spontaneously — without interruption, without it being weighed and sliced down to an acceptable amount, without poking her finger or injecting her arm, without grave consideration.

I could only hold my daughter in my arms and tell her I was sorry. And I wept, tears that had come before, that will surely come back again, as reliably as hunger in an empty belly.

An award-winning screenwriter and recipient of the 2005 Oregon Book Award for drama, Louanne Moldovan is the founder and artistic director of Cygnet Productions, a literary cabaret theater company in Portland, Oregon. Currently, she works as a writer, actor, and director for several production companies in Portland.

The Needle
Alex’s father, David Morrison, founded The Needle, a small shop that donates all proceeds from its sales of used books, household items, and vintage oddities to juvenile-diabetes research and education. 1420-A SE 37th Ave, Portland, Oregon. 503-234-7662.

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