Pink Zebra Skin

We've been through a number of pumps over the last couple of years but have found that, for Nikki, the Medtronic Mini-Med works best. Her latest Mini-Med is purple, but she still mentioned wishing it was a little 'brighter'. For Nikki that means: loud, girly, neon and PINK. Recently I was looking for skins for our cell phones and decided to see if anyone had skins for insulin pumps. Whaddaya Know!! One of my favorite places to shop for skins >>> skinit.com <<< had a fairly good variety of skins that would fit Nikki's pump. She LOVES it! It's a neon pink, zebra striped skin and fits her personality 100%.

Side note, that is Nik's hand you see in the picture and YES that is Hello Kitty painted on her thumb nail. She's such a girly girl...but then, so is her mom.

Artificial Pancreas = HOPE HOPE HOPE

Nikki JUST NOW came to me crying and asked me to read the following news article. I couldn't wait to share it with everyone I possibly can!

ARTIFICIAL PANCREAS GIVES GIRL A VACATION FROM DIABETES

click picture to view video
'Bionic' pancreas gives patients a break

STORY HIGHLIGHTS
Juvenile Diabetes Research Foundation funding 13 artificial pancreas trials
In the future, the device will be the size of a cell phone, attached to a belt
Algorithms determine how much insulin and Glucagon the patient needs

Portsmouth, New Hampshire (CNN) -- At 3:30 a.m., Stefany Shaheen awoke to a feeling of uneasiness. Something was not quite right with her daughter, Elle.

Creeping into her bedroom, Shaheen removed a lancet from its wrapper and poked her diabetic daughter's finger.

Putting the blood onto the testing strip, she saw the results: dangerously low blood sugar. Shaheen woke Elle up and gave her orange juice to keep her from slipping into unconsciousness.

Shaheen was relieved her motherly intuition had told her something was wrong with Elle that night, but she wished she didn't have to rely on it. She yearned for an automatic way of knowing when Elle was dipping into a dangerously high or low blood sugar -- and not just at night, but at school, where the 12-year-old is largely responsible for monitoring her own blood sugar.

Elizabeth Cohen is a senior medical correspondent for CNN.

Then last week, Shaheen got her wish.

Elle was selected to try out an experimental device called an artificial or "bionic" pancreas. During the three-day study, Elle didn't have to poke her finger every few hours to find out her blood sugar level because the "bionic" pancreas recorded it automatically and adjusted her insulin accordingly.

Shaheen didn't have to set her alarm to wake up every three hours at night because the device was designed to catch a dangerously high or low blood sugar and treat it.

"For the first time since she was diagnosed, I didn't have to worry," says Shaheen, who lives in Portsmouth, New Hampshire.

Medical device companies are racing to be the first to market an artificial pancreas, which takes over the work of the diabetic's malfunctioning organ. The device could potentially be used for Type 1 diabetics or Type 2 diabetics who use insulin.

"It's transformative technology," says Aaron Kowalski, assistant vice president for treatment therapies research at JDRF, a research foundation for juvenile diabetes.

JDRF is funding artificial pancreas trials at 13 sites worldwide, including Yale University, Stanford University, the University of Virginia and the University of Colorado. Device companies also are funding several other studies.

Artificial pancreas a 'game changer'
"It's looking incredibly promising," Kowalski says. "I hope very much we'll have a system on the market within four years, and I'll be very disappointed if we don't."

'Pale and pasty ... and all by herself'

It was Elle who urged her mother to enroll her in an artificial pancreas study.

The Shaheens first heard about the artificial pancreas shortly after Elle was diagnosed with diabetes at age 8, but she had to be 12 years old to enroll. So the day she turned 12 this past September, she started bugging her parents.

"She was constantly reminding me, 'Mom, you need to call, you need to call,'" Shaheen remembers.

Her mother was only too happy to comply. There had been several middle-of-the-night close calls, plus some desperate situations at school where the staff nurse was responsible for 450 children and "ill-equipped," Shaheen says, to handle the needs of a diabetic child.

"I got a call from Elle one morning. She was in the school office and her voice was trembling, and she said 'Mom, I need you to come quick. I don't know what's wrong,'" Shaheen says. "I got there and her blood sugar was dropping like a rock. She was pale and pasty and sweating profusely and all by herself."

A glimpse of the dream

Elle Shaheen tests her blood sugar levels while her mother watches.

In January, Elle walked into Massachusetts General Hospital to start the trial.

Doctors fitted her for an artificial pancreas. In the future, the device will be the size of a cell phone, but for now Elle is hooked up to a laptop.

For three days, the device did the work Elle's pancreas can no longer do.

"It went very smoothly -- her blood sugar control was really very, very good," said Dr. Steven Russell, an instructor at Harvard Medical School. "We were really very pleased by what we saw with Elle."

Russell's research partner, Edward Diamano, an associate professor of biomedical engineering at Boston University, says the device learned Elle's blood sugar patterns and made changes accordingly.

"It's making adjustments every five minutes," he says.

For that one weekend, Elle didn't have to draw blood, and she could eat foods she hadn't eaten in large quantities for four years.

"She ate Spaghetti-O's and grilled cheese and french fries and hamburgers," Shaheen says. "She ate between 67 and 100 grams of carbs [every meal], and usually she can only eat between 40 and 50."

Then, after the experiment, Elle had to leave the artificial pancreas behind, and it was back to counting carbs and poking herself every couple of hours. Her mother reset the nighttime alarm clock.

"We're extraordinarily impatient for access to the device," Shaheen says. "I think it will revolutionize the way she lives."

"That was really hard," Elle says. "I just hope one day I can use it at home."

Baby steps

I think it will revolutionize the way she lives.
Stefany Shaheen

Last week, Russell and Damiano visited the Food and Drug Administration offices in Silver Spring, Maryland, to show regulators a prototype for the artificial pancreas.

The device itself can be worn in a pocket or clipped to a belt. Two tiny pieces go under the skin, one to detect glucose levels in the blood and another to deliver insulin and glucagon, a drug used to raise very low blood sugar.

Algorithms determine how much insulin and Glucagon the patient needs, and if necessary the patient can manually override the device.

So far, the FDA has required doctors to keep patients inside the hospital while their using the device.

The potential benefits are enormous, Dr. Charles Zimliki, who chairs the FDA's Artificial Pancreas Critical Path Initiative, testified before a Senate committee last year. But "if not properly designed, use of an artificial pancreas device in an outpatient setting can place patients at significant risk."

Russell said he hopes that by the fall, the FDA will give him permission to allow adult diabetic patients to leave the building and walk the grounds of the Massachusetts General Hospital campus accompanied by a nurse, eating as they like and using the hospital's gym.

Then by the summer of 2013, he hopes to give the artificial pancreas to children attending a summer camp.

"These are all baby steps towards what we ultimately want to do, which is give them the device and say, 'Go home and check back with us in a week,'" Russell says.

Shaheen is closely watching the proceedings at the FDA, with the help of her mother, Sen. Jeanne Shaheen, D-New Hampshire, who co-chairs the Senate Diabetes Caucus.

"We're extraordinarily impatient for access to the device," she says. "I think it will revolutionize the way she lives."

Death Wind

Friday, March 2, 2012 turned out to be one of the scariest days of my life. It was a day that altered the lives of several friends, as well as hundreds of people in my community. At approximately 4:00p.m. an EF4 tornado, with wind speeds up to 175 miles per hour and over a mile wide destroyed homes, property and claimed 4 lives in Piner, Kentucky (according to the NWS).

I've been contemplating what I wanted to say in this update, but I quite honestly have so many things I COULD say that it would probably wind up sounding like an incomprehensible string of words. Instead I'll simply share a couple stories; experienced by friends or myself.

A dear friend of mine's sister lost her home to the tornado. After a harrowing experience living through the tornado that took their home -- and the oxygen from the air while turning it a literal GREEN -- the family awoke the next morning faced with the task of cleaning up and rebuilding. People began showing up from everywhere to help the family burn the shredded wood that was once their home. As the day went on, my friend (Karen) noticed a man that she was unfamliar with. He worked side by side from early morning until late in the evening with family and friends. Family members began to notice that none of them seemed to know who he was. Finally, at the end of the evening, Karen stopped the man and asked him if he was a friend of her brother-in-law. He replied "no, I don't know anyone here". Touched by this news, Karen thanked him for coming to help. His reply? He didn't want her to thank him. He said he had been helped by strangers after a natural disaster and he was doing what he could to pay-it-forward. He was a survivor of Katrina.

I've spent time this week doing what little bit I could to help; which was a drop in the bucket compared to what I've seen so many others doing. Early in the week I assisted in the sorting of the unbelievable amount of donations at our local middle school. As survivors came in, they were consistently overwhelmed at the sheer volume of items that were donated. At the same time, HAVING to be there seemed to (re)drive home their loss. I saw, and experienced, as many hugs and backslaps being handed out as I did supplies. I saw the faces of young children break into a smile at the site of the brand new toys they were able to choose from: when you're a kid and every toy you own is suddenly 'blown away' it's a very big deal. I watched a Principal, Assistant Principal, teachers from the school - and schools close by - shed tears over what their neighbors, family, friends, co-workers and students were facing. I watched the young soldier-students from the Success Academy walk into the staging area with purpose, go up to the closest adult and say "what do you need me to do, how can I help". I saw a community come together, lift each other up and find grace in the most unexpected places. I am truly proud to be able to say that this is MY community.

I, along with friends, also had the amazing opportunity to deliver meals to volunteers and tornado victims at actual tornado sites in some of the hardest hit areas. There are simply no words to describe that level of destruction. Yet, what I will remember for the rest of my life is the courage, bravery and sweet spirit of the residents of Piner, Kentucky. My friends and I spent some time on 2 different days with an amazing lady named Judy. She was actually caught outside in the tornado - attempting to get to shelter with her neighbor. It threw her down the street. She managed to hang on to her precious cats -- which she was carrying in a pet taxi. As she attempted to get to her dog, who was still tethered to his dog house, the tornado picked up the dog and dog house and threw both high up into a tree. Judy was fighting for her own survival and could only watch. Before she made it to the shelter of her other neighbor's basement, her dog's chain broke and he fell to the ground.....unharmed -- no broken bones, not even a scratch.

When we stopped by to check on Judy and bring her dinner this evening, she rushed over to us to tell us that her last 'baby' came home this morning. Jerry the cat arrived out of nowhere, with only a few minor scratches on his nose and eye. Judy continually thanked people for caring and talked about how she's been blessed throughout this tragedy. No matter where I go or how many years pass, I will never forget her.

I've included some pictures from tornado sites. I wrestled with the decision to post them. However, I believe what these courageous people are facing; and the dignity and survival spirit with which they face it deserves to be shared.

I've had one or two friends question my belief that GOD's grace has been at work through all of this because not everyone survived. To that I've answered with a quote from Max Lucado: When we face struggles, we often wonder WHY. Years from now, though, we may realize it was those struggles that taught us something we couldn't have otherwise learned --- that there was purpose to our pain. REMEMBER, the same GOD that guided his son through death and back to life said he would never leave us. HE is right there with you.

Please continue praying for the families of all the people touched by the tornadoes on March 2.

**The pictures you see in this post were taken by myself, as well as friends and tornado survivors**