Amber’s Awesome Angels

As you know by now, my daughter Amber was diagnosed with Juvenile Diabetes, also called Type 1 Diabetes, on February 15^th, 2005.  Juvenile Diabetes is an auto-immune disease where your body’s pancreas stops producing insulin, which your body needs to deliver the glucose in your blood to the cells which need to consume it to function.  She is insulin dependent for life.  She has to check her blood glucose level many times every day by pricking the tips of her fingers and drawing a drop of blood.  She’s checked her blood glucose all on her own since the second day home from the hospital, because the first night home from the hospital it took her mom and me 3 pokes to get enough blood for the test.  We haven’t been allowed to touch her fingers since.  A normal adult’s blood glucose range should be between 80 and 120.  Hers, as a diabetic, is between 80 and 180. 

If she has hyperglycemia, which when the glucose level goes above 180, she becomes tired and listless, gets headaches, has frequent urination, and nausea.  It takes insulin to bring that level down.  This is a particular problem during school.  Mornings are when her class has all their tests.  Amber frequently experiences hyperglycemia after breakfast, and it definitely affects her ability to perform well on her schoolwork.  If her body goes without the insulin long enough, the body begins to burn fat cells, and when it runs out of fat cells it starts to break down muscle and use that for energy.  Diabetes used to be called “The Wasting Disease”, because people with diabetes used to just waste away to nothing as their body consumed itself.  Long term risks with hyperglycemia include eye damage, organ damage, increased risk of heart disease, and many other conditions. If she has hypoglycemia, which is when the blood glucose level goes below 80, she experiences shakiness and dizziness.  Her skin goes pale and she loses coordination.  She has problems focusing, which is a particular problem during school.  She can become easily confused and disoriented and not know where she’s at.  Because of that, Amber cannot be left alone at any time during the day, she is not even allowed to walk to the nurse’s office by herself.  There are many stories of diabetic kids being found unconscious in a hallway because they were low and couldn’t find the right place to go, even though they’d traveled the same path a hundred times.  If not caught in time, hypoglycemia can make a person’s blood sugar drop so low as to cause what’s called a diabetic coma, where the person just goes unconscious, and even can result in death.  Every one of Amber’s teachers had to be trained on how to administer an emergency glucose shot if Amber would ever go unconscious.  A diabetic coma can happen when your blood sugar gets down to the teens or lower.  Amber’s been as low as 29 and 31.  I can’t explain the feeling you get when a number like that pops up on her glucose meter.

Up until November of 2006, besides testing her blood sugar 4 times a day, she was giving herself 3 shots a day.  That totals about 1100 shots a year.  Every year.  She’d been doing the shots herself for about 15 months by that time.  But on the 1^st of November, she got an insulin pump.  That is a device which delivers two kinds of insulin throughout the day.  First is basal insulin, which delivers a little bit of insulin throughout the day.  The second kind is bolus insulin, the amount of which is determined by the carbohydrates in the food she eats as well as what her blood sugar score is now.  The pump itself is about the size of the pager, with an LCD display and a few buttons to enter information.  It holds a reservoir of insulin that is delivered through a tube which connects to an infusion set.  That infusion set has a small catheter-like tube that gets inserted under Amber’s skin.  Instead of needing shots every day, that site only needs to be changed every 3 days.  She’s only 9 years old, and she does all this herself.

The other thing this does is free her up to be a normal kid again.  She doesn’t have to eat at a certain time every day.  She doesn’t have to eat a specific number of carbohydrates every day.  She can stay up late (if we let her!).  She can sleep in.  She hasn’t been able to do that since she was diagnosed.  Things that we as non-diabetics take for granted.  It used to just break my heart to tell her that she has to keep eating even though she was full.  Now if she wants chocolate milk instead of white milk for her school lunch, for example, she can and just has to bolus for it. 

There is hope a cure for juvenile diabetes.  The current research includes work into creating an artificial pancreas, regenerating the cells that create insulin and transplanting those cells into a new spot in the body, and finding the trigger which causes the body to kill insulin-producing cells.  Some of that research work is being done right here in Iowa, at the University of Iowa Hospitals.  There is real hope that a cure can be found within our lifetime.   I want a cure so that I can have my daughter back.  Please join me in trying to find a cure for Juvenile Diabetes by contributing to my walk team.  JDRF was recently endorsed by Forbes magazine as the charity of choice if you want your money to go to what you intend it.  For money donated to the JDRF Walk to Cure in Iowa, over 95% of it goes directly to research.You can go here to make a donation: Rick’s Walk Page

You can also join our walk team from that link as well.  The more support we get the better, we’d love to have you on our team.  Thank you very much.

We talk a lot about how bad diabetes is, how hard it is to deal with it.  But something happened over the past 8 months or so which really puts things in perspective for me.  A family that goes to our church had twin 3 year old girls, cute as a button and full of life.  They began to notice last spring that one of the girls was having problems focusing and balancing.  She was diagnosed with a tumor in her brain stem.  This type of tumor is inoperable and always fatal.  They family did what they could to extend her life as long as they could, and they treasured every moment they had with her.  She passed away early this morning, just a few weeks before her 4th birthday. 

No matter how bad we think we have things, no matter the troubles we see with highs and lows, with malfunctioning pumps, with expired insulin, and all that, we still have our children.  We can still listen to them complain about finger pricks, we can still give them hugs when a shot hurts, we can still treat them when they go low.  I almost feel guilty being an advocate and a fundraiser for my child when others have to experience grief like this. 

I’ve dealt with death before, but watching one like this was different.  This was a life at the beginning, this was a life who was so young but old enough to understand what was happening to her.  This was the first death I’ve been even remotely close to since Amber was diagnosed.  This was harder on me than I ever expected.

Cherish every moment you have with your kids and family.  Consider yourself lucky to still have your children around for you to cherish.