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Entries in JDRF (36)

Monday
Sep132010

I am beat

It was about 10 pm last night when I first thought, “something is not right” regarding Arden BG.  She shouldn’t have been so out of range (high), it was well past dinner but I thought maybe her mac & cheese was taking a second shot at her BG so I gave her more insulin and waited.

 

During this wait I watch the season finale of ‘True Blood’, I picked that show because I felt a bit like a vampire sneaking into Arden’s room to take her blood.  Please don’t tell Kelly that I watched it as she is in Switzerland on business and I’m quite sure that she’ll be miffed that she hasn’t seen it and I have.  Anyway, I went back after the show and checked Ards again and all looked like it was going well (she was coming down).  Later (after watching Sports Center) Ards DexCom CGM beeped and I thought for sure she was falling but when I checked, her BG was on the rise again - so more insulin.  I thought, “this was it for sure... I’ll just watch Entourage, check her again and I’m off to sleep”.  After Entourage (oh Vince why have you taken the junkie’s path) a heard another beep - still her BG hadn’t moved.  I was too tired to be annoyed...

 

I gave more insulin when I should have been thinking, “bad infusion site” but the site had been perfect for at least the last day so... I don’t know, it just didn’t occur to me.  Now it’s a bit after 4 am and her BG is falling, not a lot but just enough that I thought that this was over and I passed out reasonably sure that when I got up at 7 all would be well.

 

I don’t think I fell to sleep until about 4:30 and WHAMO did 7 come fast but still I was energetic because today is the day that I’m going to talk to Arden’s class about type I and she was very excited.  I woke Cole and reached for Arden’s CGM...

 

Her BG was over 350... Then the horrid feeling that I screwed up and should have swapped her infusion site nine hours ago hits me like a slab of concrete to the chest.  She’s been getting minimal insulin for nine hours and that just breaks my heart.  So I swap the pod and give a giant bolus with the intention of catching the fall with breakfast in an hour or so... but the fall doesn’t come.

 

8am, more insulin - 9am, more insulin, is this site bad too, no can’t be... but just in case I give her next insulin by syringe.  Another hour and nothing - then I speak with Cathy at CHOP and she says to push even more fluids.  Maybe Arden is dehydrated so the insulin isn’t having it’s full effect.  Arden picks up the pace on the water drinking that I had her doing and we finally started to see results so I kept my appointment to speak to Arden’s class.  With Arden in tow we were off.

 

Her BG was falling nicely during my chat with the kids and at one point we had to test her - she needed something to eat.  I spent another 30 minutes in the nurse’s office getting Arden stable, I did so just in time for recess...  I signed Ards into school, went over the last 10 hours of BGs with the nurses and came home where I am now writing about the day with white flashes before my eyes because I am so tired.  Can’t really close my eyes now or I’ll miss the nurse’s calls.

 

Sorry for the run-on sentences and general lack of English writing rules being observed - I really am beat.

 

That is Arden’s Day... and apparently it’s mine too.

 

Please consider making a donation to Arden’s 2010 JDRF walk at this link.

Monday
Aug232010

Promise Meeting

Today we visited our Congressman, The Honorable Chris Smith, to thank him for his past support of legislation that benefits type I diabetes research.  

 

Our group meet with the Congressman for more then an hour, we spoke about our personal stories and shared what it’s like to live every day with type I.  Rep. Smith was a gracious host, I learned of his many endeavors in the medical research area and he is a strident supporter of people like Arden and their needs.

 

He spoke with feeling about the need for more financial support for research and shared some of the ways that he hoped to attract scientists to that research.

 

It was a wonderful meeting and we thank the Congressman for his time and insight.  

 

You can learn more about the JDRF’s Promise To Remember Me initiative at this link, I can’t say enough about the work that the JDRF does in Washington on behalf of the children with type I - they are doing amazing work!

 

**

The following are archived comments from this post. You can post new comments below.

That is awesome! So glad you seized the opportunity to meet with him.  I hope your story (Arden's story) made a difference in how he will think of the need for diabetes research.  Even if only a little, it counts.
Monday, August 23, 2010 - 07:25 PM

 

Tuesday
Aug172010

JDRF TV ad

Email from the JDRF

Attention all budding television stars!

Your chance to shine is just a click away…

If you are between the ages of 6 and 14 and have type 1 diabetes, YOU have the chance to be featured in a TV commercial promoting the JDRF Walk to Cure Diabetes, which will run in the Delaware, New Jersey and Philadelphia markets!

 

If your team registers 10 additional walkers between today and Friday, Aug. 20th that TV spot could be yours…

End email

 

If you’d like to walk with Arden this year or just help her gain enough walkers to be considered for the ad... you can sign up at this link, it only takes a few minutes. 

https://walk.jdrf.org//index.cfm?fuseaction=walk.walkeradd&chapterid=4574&eventID=6526&teamid=T1672289

 

 

When siging up please make sure that you have choosen Arden’s team name, “Walk for Arden” and that I, “Scott Benner” am your team captain.  Thank you all!

 

**

The following are archived comments from this post. You can post new comments below.

Scott
Thanks to everyone that signed up! Arden's name was randomly pulled from a hat this morning and she will be representing the Eastern PA Chapter of the JDRF in this commercial. More details soon...
Monday, August 23, 2010 - 01:17 PM
Scott
exurb from JDRF email to walkers...

Congrats to last week’s winner Arden Benner
from the team Walk for Arden.
Arden will be featured in this year’s 6abc JDRF Walk commercial spot! Please look for this commercial on 6abc
sponsored by our friends at
Good Neighbor Pharmacy!
Monday, August 23, 2010 - 07:09 PM

 

Monday
Jun142010

TrialNet results for Cole

My son Cole (not a type I child) participates in a TrialNetNatural History study for the development of type I diabetes. It tests for “diabetes-related autoantibodies”.  Cole’s result was again negative, meaning that, “no diabetes related autoantibodies are present at this time” in Cole.  This doesn’t ensure anything in the future but it is wonderful news today to say the least.  Cole will be re-tested yearly until he is 18 yrs old.  

 

I would urge any siblings of a type I child to participate in TrialNet’s study. The information that they gather helps scientists understand so much about type I and can help a child that is at high risk to develop type I to stave of the disease.

 

That said, I received Cole’s letter today and opened it in the driveway.  I was choking back the tears of joy and guilt that I experience every time Cole gets this news.  I’m of course thrilled that Cole is not at an elevated risk of developing type I but at the same time I feel terrible for being happy while Arden suffers.  Anyway, back to it... I was choking back the tears when my neighbor came out of his house and began asking me a question, I was barely able to escape that conversation with my dignity when Arden’s nurse called to go over her lunch time insulin.  She too must have thought I was insane.  So to my neighbor and to Arden’s school nurse, I’m sorry if I cut our conversations short, I was trying not to cry.

 

And to a future Cole that I’ll one day let read this, I know we tell you that this test is to help Arden and other kids with type I but it’s also for you.  I’m sorry that I can never tell you your good news, I just don’t want you to worry.  This is one of the few times that I keep something from you.

 

That’s about as much transparency as I’ve got in me today...

 

To the rest of you, be transparent, test in public, your openness will grow understanding and I believe, quicken the path to a cure.

 

Friday
Jun112010

Walk Number Five

I just received a text message from Arden’s Day support Dan Stewart letting me know that he has signed up for Arden’s 2010 walk.  Thank you Dan!  

 

That news from Dan got me up off my butt... I signed up just now {embarrassed}.

 

You can sign up to walk with Arden at this link or

You can make a donation to Arden’s walk at this link

 

I know it’s a little early for all of this... You won’t be hearing about it again for quite some time, enjoy your summer!

 

All the particulars are below...

 

Bucks County Community College in Newtown, PA

City: Newtown, PA

Venue: Bucks County Community College

Date of Walk: 10/24/2010

Registration Start Time: 9:00 AM

Walk Start Time:10:00 AM

Length of Walk: Up to 3 Miles