Saturday, March 24, 2012

Ruby the Diabetes Bear

As I was preparing my lesson plans for next week, I had one of my random THAT’S MY NEXT BlOG moments. I know, I know, how on earth can doing a class lesson plan relate, in any way, to our diabetes blog? WWWeeelll, I was thinking about my young students who have been battling this crazy virus lately; 3 of which have come down with a rather high fever during the day, while in my care. I have a special place in my classroom (close to me) where I’ve been having them lay as they wait for their parents – isolated from the other children but still within my TLC.

>>>I must add here, none of the 3 were in the room during the time their ill classmates had a fever so they didn’t catch it from each other; and all items used were immediately removed by me and washed (in case some of you were gasping at my keeping my ‘babies’ in my room, under my overprotective care). <<<<

Okay, back to my original observations. Each of my sick ones immediately requested to hold onto Ruby the Diabetes Bear while they waited for their parent. Nikki came to speak at our school back in November; to help teach young kids about T1D. Ruby is one of the things she uses when she talks to young children. For anyone who may not know, years ago JDRF produced 2 bears – Ruby and Rufus the diabetes bears. Each of them has colorful patches on all the areas where a T1D child can receive injections/site insertions, etc. Each bear wears a Medic-Alert bracelet stating he/she has diabetes. Nikki used to give Ruby a shot whenever she got one of her many insulin injections - back when she was on what we called her N & R regimen (a manually mixed “cocktail” of long acting and fast acting insulin that had to be given through an injection 3 or more times per day.) Doing this was mentally helpful for Nikki – especially at such a young age. Ruby also helped prepare her for when she would eventually give herself her own injections; which she could do by the age of 7. Ruby was a very special friend to Nikki during a very fragile time.

Now, Ruby lives in my classroom for the majority of the year (she comes home in the summer) and is constantly encircled by tiny, loving hand. All of my students, past and present, LOVE playing with her. However, lately I’ve noticed my kiddos wanting to hold Ruby when they feel bad or when they are having a rough day. I asked one of my more precocious students – whom I cannot name, but I simply adore – what made her want to hold Ruby when she was sick. She replied “she made Nikki feel better so I knew she would help me too”. Whew, now that was a great moment. It means our efforts are paying off! It’s worth all the crazy questions and the stares in public (well, most of the time) to teach the next generation about diabetes. My young students aren’t afraid of Ruby the Bear because she has diabetes. Quite the opposite, they wanted the same comfort from Ruby that Nikki received at their age BECAUSE Ruby has diabetes.

My HOPE is that by the time they are old enough to really understand what diabetes is, it will be a ‘disease of the past’. AND maybe, just maybe, they will take some important life lessons and comforting childhood memories with them into adulthood. Lessons & memories instilled by a brave young girl and her stuffed bear named Ruby.

Saturday, March 17, 2012

Battling Burnout

Nikki’s 9th live-a-betes anniversary is just around the corner. This year has been a little tougher than some because of the additional diagnosis of celiac disease. I’m noticing some signs of ‘diabetes burnout’ or maybe it’s just burnout in general. As her mom, I feel pride in sharing the astounding strength I see in my child; but she is only 14 years old and has so many things going on in her young body that sometimes it all seems too much for her.

Tonight, as we were driving home from an event about 1-1/2 hours away, we had to stop for dinner. Of course, any trip or event we attend, that involves food, now means that we travel with a food kit; just in case the people we are visiting or the venue we are attending doesn’t have anything Nikki can eat. So I did have food with us, but she wanted fast food. I used my nifty new APP – GF Fast Food and it was great; BUT simply listing that hamburger patties are a gluten free choice is a little misleading. Yes, hamburger is gluten free; HOWEVER, what spices are used? Is it prepared on a grill/stove where other foods, containing gluten, have been prepared? Cross contamination is always a concern. We were discussing these matters when I noticed Nikki had gotten very quiet. This usually means she’s upset or frustrated and she’s trying not to show it. I gave her my standard “you know you will eventually tell me, so let’s talk about what’s on your mind”. Little, silent tears began running down her face. In a VERY quiet voice, she replied “I’m so tired of it all. I just want to be able to eat what I want, without thinking about 10 million things that could hurt me”. BAMMMMMM; my heart shattered into a thousand pieces. I hugged her, gave her a few minutes to work through what she was feeling, and then we regrouped and started over.

I asked her if anything sounded good. She wanted Arby’s. We stopped at the next one and went in. I gave the staff a synopsis of our situation and they were more than willing to help us – a very sweet group of people. Nikki ate roast beef, freshly prepared on a separate cooking surface, placed immediately into a plastic container and sealed for us. Then they gave us an individually wrapped fork so she could eat the roast beef. She also had potato cakes, prepared in a fryer for potato food only and a side container of cheese to dip the potato cakes in. She topped it off with a Diet Mountain Dew. NOW, you are probably thinking that it was meal loaded with carbs….nope. The only carbs were in the potato cakes. So, even though it wasn’t the healthiest meal – it was just what her heart needed……..a little comfort food. We need to make the most of these moments and find them where we can in order to avoid a full blown burnout episode.

As a mom, I HATE that I can’t take any of this away from my girl. However, I have to remember to keep these awful feelings of uselessness and heartbreak in check -- I don’t ever want to make Nikki feel like a helpless victim. We all have brief pity parties, and that’s normal. I just want to make sure I am a mom that EMPOWERS my child; not emotionally paralyzes her. Empowering her means I need to make sure: (1) I’m giving her the support SHE needs and not the support that makes ME feel good, (2) I do not become the Diabetes/Celiac Police – Nikki is quite capable of taking care of many of her own D needs and is comfortable letting me know when she needs help. She can read food labels better than most adults. She knows, for instance, that a food label stating “contains modified food starch” but doesn’t specify “modified corn starch” means she needs to check and see where (what country) the item was manufactured and ( 3) help her find ways to channel her frustration with both diseases into her art, cooking and raising diabetes/celiac awareness.

Diabetes burnout can take over your life and cause immediate and long term health complications (that is, on TOP of complications that are faced even when a T1D is obsessively vigilant about D control). 9 years ago, I faced the harsh reality that I simply cannot spare my children every monster they must and will face in their lives. This is a reality that seems to enjoy keeping me company – as if I could ever forget. Yet, a truth that is WAY more important than any monsters in our lives is what I hope to instill in both my daughters. That is: Life is full of uncertain, unfair and often scary moments and lessons. But the lessons about laughter, love, faith and victory are stronger and brighter than any monster you will face. If GOD brings you to it…he WILL bring you through it.

All for now….

Thursday, March 15, 2012

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 >>> <<< 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.

Monday, March 5, 2012

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!


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

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**