T Plus One

Many of you probably thought about a rocket launch and the countdown.  When NASA launches a rocket, the countdown starts and is typically marked with “T minus 2 minutes”, etc.  Once liftoff occurs, you switch to the plus side of the countdown.

Today marks T Plus 1 year for the Clayton family.  When Kyle was diagnosed with Type I diabetes on January 31, 2000, many in the diabetes “club” talked of a cure being found within 10 years.  Well, that came and went last year and we are still dealing with Kyle’s diabetes. 

Am I bitter – maybe, but not too much.  Yes, I would give my islets (inside joke) for him to be cured, but what will that cure look like?  Eleven years ago, I thought a cure would be that Kyle would take a shot or IV and then, BOOM; he’s cured – no more shots, no more finger sticks.  But today, Kyle is on an insulin pump which puts insulin into his body continually and allows up to dial up more insulin based upon what he eats.  All this is done through an infusion site which he changes once every three days.  There is also a Continuous Glucose Monitor (we don’t use) which is inserted under the skin and provides glucose readings once a minute and even has alarms for low or high glucose trends.  Clinical trials are occurring which pair these two devices and let them “talk” to each other; creating an artificial pancreas.  If this could be available, is this what the cure looks like?  Maybe not in the traditional sense, but close. 

I look back on what our diabetes regime was when Kyle was diagnosed.  He was on two types of insulin (Humalog & Ultralente) which required 5 daily injections (at a minimum).  We checked his blood sugar with a meter that took a very large drop of blood.  We then would calculate his insulin dose using an insulin to carb ratio which we calculated ourselves.  Today, his is on the insulin pump with one type of insulin.  His meter calculates his dose based upon his reading and communicates with his pump via infrared signal. 

Yes, we have come a long way, but there is still work to be done.  The Clayton family became a member of a club that no one wants to be in eleven years ago.  Though we didn’t want to be in it, we have met some great people in this club who have blessed our lives.  Whether it is the great medical staff at Vanderbilt Children’s Hospital and the Eskind Diabetes Center, the great staff at the Middle Tennessee JDRF chapter, the Type I kids and their parents, the JDRF friends we have met nationwide, or the faceless names of folks I have e-mailed on the web; all are great people who have blessed our family.  I wish I had never met them, but I am glad that they were, and are, there.

Let’s not let number get too high on the “plus” side of T.

Zach, a Type I parent and a Tennessee Squire

A Tale of Three Zach's, or Zak or Zack

One of my volunteer activities with the Juvenile Diabetes Research Foundation (JDRF) is volunteering as a cyber-volunteer with the Online Diabetes Support Team (ODST). Members of the ODST answer questions posed by people via the JDRF website (www.jdrf.org). The questions range from detailed questions about diabetes and school to general about how to cope with a newly diagnosed child.

When my youngest son, Kyle, was diagnosed with Type I diabetes at the age of 18 months old, our world was rocked. There wasn’t an ODST to turn to or an organized outreach effort. Besides JDRF, one of the places I turned to was a website tailored to parents of kids with Type I (www.childrenwithdiabetes.com). One of the features of this site (CwD) is an e-mail group of parents. These e-mails deal with support, gripes, fundraisers, etc. I really don’t get too involved by posting to the group, but I read the e-mails that come across.

Now that you have that background, here is the story. I received an ODST request from a newly diagnosed family in South Africa wondering about online support groups. Since JDRF doesn’t have a chapter in South Africa, I referred the father (Zack - #1) to JDRF’s social networking site – www.juvenation.org. About a week later, I was reading the CwD e-mails and someone indicated that they couldn’t make a fundraiser due to the distance. As I looked at their sign-off, I first noticed they had a son named Zak (#2) and that they were in South Africa. They also were “experienced” Type I parents meaning that their loved one was diagnosed a few years ago. The light bulb went off immediately. I asked them if they would mind if I shared their contact information with the newly diagnosed family. Of course, they said “no problem”; so I did share the contact information. About a week later, I got an e-mail from the newly diagnosed family indicating that contact was made and they were even able to meet at the doctor’s office.

Hard to believe that this Zach (#3), sitting in Kingston Springs, TN could hook up two people in South Africa.

Zach, A Tennessee Squire

Changing the World's Perception - One Person at a Time

Having returned from vacation, I was going through a week’s worth of newspapers and an article caught my eye (http://www.tennessean.com/article/20100701/NEWS01/7010342/Car-stickers-could-help-diabetics-get-help-faster). The headline indicated there were stickers for people with diabetes to place on their cars so medical personnel and police would be aware the driver’s erratic behavior may be related to a low (hypoglycemic) or high (hyperglycemic) blood sugar episode.

Before I even read the article, I realized that I had someone that I needed to educate about the “D” word. Yes, I am talking about “diabetic”. For a long time I have lobbied against the use of this word. In short, labeling someone as a “____ic” assumes that the disease defines or becomes the individual. While diabetes is serious, my son is a boy who has diabetes; it doesn’t have him. For a longer discussion on this, see my blog entry titled “What’s in a Name?” located at
http://squireponderings.blogspot.com/2009/10/whats-in-name.html.

As I continued reading the article, I came across a term in the article that both made me laugh and fume. I quote the writer “Some people aren't aware of the symptoms of a diabetic attack. Victims may be dizzy, confused, nervous, agitated or drowsy. They also could have fruity breath or start to vomit.” My first response was “what the hell is a diabetic attack?” Does it mean that diabetes reaches up and attacks my child or my child labeled as a diabetic goes ballistic and attacks someone? I am being facetious, but that term conjures up images people having fits or something. I would prefer the proper terms of hypo- or hyperglycemic episodes.

I realize that I may be hyper-sensitive and some folks, including diabetes folks, may not agree. However, I view it as another opportunity to educate people about diabetes and the fact that you can’t catch it, there is a difference between Type I and II, my son didn’t develop diabetes because he ate too much sugar, etc.
I dropped an e-mail to the writer expressing my thoughts about her use of “diabetic” and “diabetic attack”. She hasn’t responded. Maybe she brushed me off as a whiner, but at least I tried and hopefully have made you think about it as well.

Zach, A Tennessee Squire

P.S. I was asked to convert the letter I wrote into a blog format and it was posted at a friend's site (http://www.daddybetes.com/2010/07/changing-worlds-perception-one-person.html) as a guest blogger.

A Decade

A decade. As most know, a decade is defined as a period of ten years. Today marks the end of a decade for me and my family.

At noon on January 31, 2000, Dr Jennifer Najjar altered our lives forever with the words "Kyle has diabetes." "Isn't that what old people get?", "what did we do?", "can he get rid of it?", and "how will this impact his life?" These were some of the thoughts going through Momma Squire & I's mind that day. Kyle was diagnosed with Type I (juvenile) diabetes when he was just 18 months old. Ever since that day ten years ago, he has had to have insulin injected into his body in some form or fashion. That is 3,653 days of watching what he eats, monitoring blood sugars (minimum of 5 finger sticks a day), counting carbs, and dosing insulin. While I would give anything for Kyle not to have endured this, some blessings have come from this. Sound strange? Let me explain it on two different fronts.

First, when Kyle was diagnosed, we both were working full-time jobs, running crazy, and our idea of eating in was ordering pizza. Lori had quit her job @ HCA to go to work in a bank branch for less pay (35%), but more potential (bonus). I think that step down in pay was God's way of preparing us for what was coming. When Kyle was diagnosed, Lori quit her job to stay home and take care of Kyle. Thankfully, we had taken that intermediate step down in pay so it wasn't like suddenly stopping from 70 mph; it was more like stopping from 40 miles mph. Kyle's diagnosis slowed us down and made us focus inward on what was really important - our family.

Secondly, when Kyle was diagnosed, I heard about an organization called Juvenile Diabetes Research Foundation (JDRF). We immediately got involved by walking in JDRF's annual Walk to Cure Diabetes that fall. Ever since that day, Lori & I have volunteered with JDRF on the local, regional, and national level. We have met people who have become life-long friends by working side-by-side for a cure. These friendships were forged by having a common bond and we have leaned on each other through the years and we are the richer for it. We have met medical professionals who have dedicated their lives to helping find a cure and caring for those with Type I until that cure is found.

Speaking of cures, when Kyle was diagnosed, we were told that a cure would probably be here within 10 or so years. Well, we are now on the "so" part of that expression because right now, Kyle's insulin pump is putting insulin into his body as he sleeps. Honestly, my idea of a "cure" has changed over the last decade. I believe there won't be a "magic" pill or potion and "poof", Kyle's diabetes is gone. I think it will take multiple steps to finally realize the cure. A cure could even be in the form of an artificial pancreas. Who knows?

God has blessed us in so many ways in addition to those mentioned above. Yes, it is a nasty disease that keeps everyone on their toes, but when Kyle was diagnosed, God helped us with that as well. The only bed that was available for Kyle at Vanderbilt Children's Hospital was on the oncology (cancer) floor. Kyle was the "wellest" baby there. Daily we would hear parents wail as physicians told parents bad news regarding their children and we would see very sick children in the halls. We realized that most of these kids would not be going home with their parents - ever. Our Kyle would get to go home and live a full life.

A decade does make a lot of difference.

Zach, A Tennessee Squire