Life is Short, Laundry is Eternal

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Life Is Short, Laundry Is Eternal

by Scott Benner

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Life Is Short, Laundry Is Eternal: Confessions of a Stay-at-Home Dad

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Sunday
Feb082009

JDRF Awards

Sunday was the JDRF’s Awards & Recognition luncheon at Citizens Bank Park.  You may remember that Arden won the Golden Sneaker Award in 2007 (shown above).  In 2007 Arden’s walk team raised over $10,000 to fund type I diabetes research!

 

Arden’s walk team was again recognized this year for it’s efforts.  Walk for Arden was again one of Philadelphia’s largest donation generators.  Arden’s team raised over $12,000 in 2008 for type I diabetes research!  I want to take this opportunity to thank all of you that donated to her walk and to ask that you please take minute to watch the video that I’ve made chronicling our walks.  See you at the walk in 2009!

 

 

Thursday
Feb052009

Mother accused of neglect in type I death

DALLAS (AP) - The mother of a 9-year-old diabetic who died as she lay beside a bag of candy and other sweets has been accused of helping cause her death by failing to help the girl manage the disease and giving her high-glucose foods.

Georgia Lee Jones, 27, was arrested Monday after a long investigation, The Dallas Morning News reported in its Wednesday editions. The mother of five faces a felony charge of injury to a child and faces up to life in prison if convicted in the May 2 death of Chasity Butler.

"Chasity's diabetes was not monitored properly causing her to be constantly sick and in bed rather than leading a normal life like other children her age," police documents say.

Jones was released from Dallas County Jail late Tuesday on bond. A home phone number for Jones could not be found Wednesday, but her husband defended her in an interview with the Morning News.

"All in all, I believe my wife is a good mother," 30-year-old Marqus Butler said. "And she's a good woman, also."

The death was ruled natural due to diabetic complications by the Dallas County medical examiner, but according to police and state Child Protective Services reports, Jones had failed to properly treat or monitor the disease.

Police said CPS investigations showed Chasity often had to take readings of her blood glucose levels herself and give herself insulin injections or get help from a younger sister. The investigators said Jones did not adhere to diet rules, often feeding Chasity foods high in glucose like noodles and sweets.

Police say that the day before the girl died, she had stomach pain, diarrhea and vomiting. Then she did not eat that night or the next morning. Authorities say her mother checked her glucose level and found it dangerously high, but still fed her noodles and let her eat cupcakes and candy.

Days before Chasity's death, CPS inspected the home because of concerns about whether Jones was sufficiently managing Chasity's diabetes and providing enough food to the children. CPS said the sisters appeared to be in good condition and described Chasity as "upbeat" during the interview.

Butler said his daughter's July 2005 diagnosis of the Type I form of the disease came after she suffered a diabetic coma.

Police say that a week after the diagnosis, Jones was scheduled for a Diabetes 101 class, but didn't show up.

In the years following Chasity's diagnosis, CPS got reports that Jones wasn't adequately managing her daughter's disease but didn't find evidence of neglect. But police documents say that a clinic told CPS that Jones was lax about sending in blood glucose level readings that are to be taken several times a day with a device at home - and often went two to three months without sending in any readings.

Police said that when the readings were sent in, Chasity's glucose levels were dangerously high. The girl had to be hospitalized at least five times during 2006 and 2007.

CPS placed Chasity's four younger sisters, ages 2 to 8, with Butler's mother, who with her husband was given permanent custody in December.

http://m.apnews.com/ap/db_8560/contentdetail.htm?contentguid=PUqnBIqD

Wednesday
Feb042009

What passes for great

Today Arden had an appointment at CHOP to begin using her new OmniPod insulin pump.  We went in for what is called a ‘saline start’.  The pump is loaded with saline instead of insulin so that I can practice using the device - the saline start helps avoid any unpleasant on the job training mistakes.  

Cheryl, from CHOP’s Insulin Pump Team was fantastic!  I left with a firm day one understanding of the pump, it’s PDM (Personal Diabetes Manager) and the calculations that they require.  There is plenty more to learn but Cheryl did an excellent job of acclimating me with this new and different way of managing Arden’s BG.

The pump should add a level of control to Arden’s management that doesn’t exist when you inject the insulin.  If you’re interested in following Arden’s progress with the pump please visit our new OmniPod blog (link at top of page), there you’ll find photos, videos and accounts of the process and changes in management. 

Today was for a great day for Arden and her health.  I took a moment before the appointment to reflect on the last two and a half years and what it has taken to manage Arden’s moment to moment health needs.  It has been difficult and exhausting but I wouldn’t change anything about how we handled the situation.  The level of attention that it takes to manage type I diabetes in a person as young and as small as Arden is high - but the rewards are irreplaceable.  Now with a bit of luck, Arden’s pump can take over a few of the mental responsibilities that I currently have.  

Today was a great day for us but sad at the same time.  Sad because what sometimes passes for great when you have type I diabetes would be considered disastrous for someone without it.  Today I am celebrating that Arden will have a small device taped to her every moment of every day until type I is cured.  Please don’t lose sight of the fact that Arden’s diabetes is sill moving her towards the end of her life faster then she should be going and consider the JDRF when you make a charitable donation.  This pump is not a cure, it and the insulin inside are merely keeping Arden alive until a cure is found.  

As always, we appreciate your support and interest.

Wednesday
Feb042009

A Great (saline) Start

Today Arden started using her OmniPod, though it doesn’t have insulin in it just yet.  We will spend seven days using the pump as we would normally but instead of insulin, saline will be pumped under Arden’s skin.  This “practice” time is meant to get me aquatinted with the pump’s operation before I begin using it to administer Arden’s insulin.  If you’re interested, you can read more about our appointment in Daddy’s Blog. 

 

Check back here throughout the week for updates as I’ll be trying to keep this information fresh for not just you the reader but also for me.  I think that this blog will be a fantastic resource for people considering a pump.  I also expect it to serve as a referable diary for me.  

 

Seven days till ‘No more needles’!

Tuesday
Feb032009

The OmniPod arrives

 

 

Arden’s new insulin pump has arrived.  This pump will decrease Arden’s shot frequency from twenty-one times or more every three days down to once every three days! 

 

It should also help keep her blood glucose more stable and allow her to eat more frequently and with much more freedom!  

 

We have an appointment tomorrow at CHOP to attach the OmniPod (with saline, not insulin) so that we can begin a seven day training period. We will begin to use the pump exclusively on February 12th as long as everything progresses according to plan.

 

You can view the video on our site in a larger format here

 

and here on YouTube...