Sunday, January 31, 2010
Thursday, January 28, 2010
Tuesday, January 26, 2010
Sunday, January 24, 2010
Thursday, January 21, 2010
Cruising along in life. Three girls now. My youngest, Gracie, and her diagnosis at age 6 with Type 1.
Another kind of ride. Remarkably similar, yet very different. Challenging, joyful, painful, amazing, discouraging, wonderous and sad. All at one time.
Learning to be here, in the moment. Truly and fully in my life. Appreciating the now. Learning the lessons I need to learn from all this.
Watch this video. Remember the 360. Trying hard to do this with my life since the big D.
Worth every second. Watch til the end. The best 5:55 minutes you will spend today, I promise.
Wednesday, January 20, 2010
If the only prayer you ever say in your entire life is thank you, it will be enough.
-- Meister Eckhardt
Friday, January 15, 2010
Wednesday, January 13, 2010
JDRF Forms Partnership With Animas to Develop First-Generation Automated System for Managing Type 1 Diabetes
Partnership to develop automated system to better control diabetes represents first step on path to artificial pancreas --
NEW YORK, Jan. 13 /PRNewswire-USNewswire/ -- The Juvenile Diabetes Research Foundation today announced an innovative partnership with Animas Corporation to develop an automated system to help people with type 1 diabetes better control their disease -- the first step on the path to what would be among the most revolutionary advancements in treating type 1 diabetes: the development of an artificial pancreas, a fully automated system to dispense insulin to patients based on real-time changes in blood sugar levels.
Animas, a Johnson & Johnson company, is a leading manufacturer and distributor of insulin delivery and glucose management systems. JDRF is a global leader in research leading to better treatments and cures for type 1 diabetes.
The objectives of the partnership, a major industry initiative within the JDRF Artificial Pancreas Project, are to develop an automated system to manage diabetes, conduct extensive clinical trials for safety and efficacy, and submit the product to the U.S. Food and Drug Administration for approval.
"If successful, the development of this first-generation system would begin the process of automating how people with diabetes manage their blood sugar," said Alan Lewis, PhD, President and Chief Executive Officer of JDRF. "Ultimately, an artificial pancreas will deliver insulin as needed, minute-by-minute, throughout the day to maintain blood sugars within a target range. But even this early system could bring dramatic changes in the quality of life for the 3 million people in the U.S. with type 1 diabetes, beginning to free kids and adults from testing, calculating and treating themselves throughout the day."
Dr. Lewis noted that "JDRF will provide $8 million in funding over the next three years for this project, with a target of having a first-generation system ready for regulatory review within the next four or so years."
The first-generation system would be partially automated, utilizing an insulin pump connected wirelessly with a continuous glucose monitor (CGM). The CGM continuously reads glucose levels through a sensor with a hair-thin sensor wire inserted just below the skin, typically on the abdomen. The sensor would transmit those readings to the insulin pump, which delivers insulin through a small tube or patch on the body. The pump would house a sophisticated computer program that will address safety concerns during the day and night, by helping prevent hypoglycemia and extreme hyperglycemia. It would slow or stop insulin delivery if it detected blood sugar was going too low and would increase insulin delivery if blood sugar was too high. For example, the system would automatically discontinue insulin delivery to help prevent hypoglycemia, and then automatically resume insulin delivery based on a specific time interval (i.e., 2 hours) and/or glucose concentration. It will also automatically increase insulin delivery to reduce the amount of time spent in the hyperglycemic range and return to a pre-set basal rate once glucose concentrations have returned to acceptable levels.
In this early version of an automated diabetes management system, the patient would still need to manually instruct the pump to deliver insulin at times, (i.e. around meals). But this "hypoglycemia-hyperglycemia minimizer" system would represent a significant step forward in diabetes management, and could provide immediate benefits in terms of blood sugar control, by minimizing dangerous highs and lows.
DexCom, Inc., a leading manufacturer of CGM devices, will supply the CGM technology for the system to be developed by JDRF and Animas.
Tell me how much this would rock, on so many levels. In Gracie's lifetime, an artificial pancreas? Almost takes my breath away, cause I have been wanting to order one of these for about a year now.
The control she would have, the freedom she would have, the length of her life would increase, her complications would decrease with greater control, the nasty lows, the unspeakable highs, all rolled into one.
When people always mention 'cure' to me after they find out Gracie has Type 1, I am always a little hesitant to put all my eggs in that basket. There are people who are senior citizens with Type 1, who have been reassured for decades that a cure is right around the corner. I can imagine, well, no, I cannot even imagine, waiting 50+ years for a cure. This press release and the notion that they are actually funding and working on an artificial pancreas, now that speaks 'cure' to me. I'll jump in that basket, holding all my eggs, any time.
Monday, January 11, 2010
Friday, January 8, 2010
It has been exactly one year, this Saturday January 9th, since Gracie’s diagnosis with Type 1. That’s 365 days. That’s 525,600 minutes.
I think I spent about 500,000 of them worrying.
I took Grace to the hospital for some symptoms that were classic Type 1 – thirst, frequent urination, weight loss. We ended up spending 5 days in the hospital. When they admitted her, at 3 am in the morning, her blood sugar was in the 600 range.
I think of how close we came to losing her to Type 1. My heart starts to break when I think about it too long. I can’t go there, I just have to think they we were lucky, we noticed, we caught it in time. We did. I should stand and applaud us for noticing and taking action. I twist my brain into thinking these thoughts when the diabetic coma she could have been in slips in there.
The 5 days are a blur to me now. Countless IVs, tests, doctors, nurses – oh the nurses!, bottles of Novolog, bottles of Lantus, those damn hospital beds that are not comfortable, giving her a bath and cleaning her in a hospital tub, waiting, waiting, waiting, the playroom across the room from our room – which was our saving grace during our entire visit, nutritionists, carb counts, whiteboards filled with mathematical calculations that stretched my brain in throbbing, headache-inducing ways, our kindly endo who came in and first words to me were ‘I am so sorry she has Type 1.’ I broke down and sobbed as I sat in the rocking chair, rocking, rocking, endless rocking, as he spoke of genetic history, care, books, education, a long life, complications…
When Grace was first seen that night we drove to the ER, she screamed. You see, her grandmother – her heart, her soul, her dear grandmother – had passed away almost one year ago. She saw countless hospitals and ERs in her 5 years with Mom-mom, enough to know that hospitals are good, and in her mind, very, very, very bad. Bad in that they let people die. That’s the workings of a 6 year old brain. That was why she was screaming that first night.
Do you know what she screamed? Over and over and over.
“DON’T LET ME DIE! I DON’T WANNA DIE!’
And as I held her, they inserted IVs, tested and looked at me like I was crazy. Bringing this child who screams about death into their ER. I will never forget their faces. They knew no backstory. They must have thought she was crazy. I was thinking, God, she is screaming something that I want to scream – “Don’t let her die, please dear Lord, don’t let her die.”
You see, for me, as it always has been in my life, I have to go down, way down, to the depths of the low, even below the depths of the low, before I can rise up. I had to have those experiences to bring me here, to this moment, the about-face of that one.
I have accepted Grace’s diabetes. I can teach her what she needs to know about diabetes. I can show her what good care is. I can connect her to others who have Type 1, so that she can not feel alone. I can endure the lows, the highs and it all. I am strong.
She is strong. She is resilient. She can face her diabetes.
It took me about 500,000 minutes to get to this place.
So, while I sat there one year ago in that hospital room and thought Grace’s life, my life, and my family’s life had come to an end, I needed a reminder that life is a circle. It was the beginning. The beginning of this journey with Type 1. Of a new family, one that is stronger, more capable, more connected, more funny and more focused than before.
I decided to acknowledge this past year and those who have helped us by supporting us, their friendship, their love and their positive thoughts. Grace and I designed cards. I mailed them to people in our life who see that we can go on, with diabetes.
This diagnosis and life is not a death sentence. We walk with people beside us who have been there, who are still there, who are showing the way to live with this disease. There is love from our families. There is support on-line and in-person. There is friendship beyond measure. For all these people in our lives, I thank them all, from the bottom of my heart, for showing us the way and lighting the path on which we travel.
Tuesday, January 5, 2010
Monday, January 4, 2010
“The key to everything is patience. You get the chicken by hatching the egg, not by smashing it.”
Today, January 4, 2010, Gracie, age 7, gave herself her first shot in her arm.
She had done it at school before, but not at home, in front of us.
She calmly got the loaded-with-Novolog syringe and put it in her upper left arm and voila!
Her comment about it:
'Really, it's no big deal Mom.'
It almost made me cry.