An Update about Arden

It’s been some time now since this blog started so I wanted to let you know how Arden is doing.  She had her quarterly endocrinologist appointment last week.  Her A1c was 8.2, too high for you and I but acceptable for a child her age.  We are thrilled!

Her doctor wants her to see a nutritionist because she says Arden isn’t gaining weight fast enough but that probably isn’t a sign of any thing to worry about.  Unless....

We are waiting for the results of a few blood tests.  Arden is being tested for Celiac Disease.  It is apparently more prevalent in diabetic kids then in non-diabetic and if she has it could be the cause of her slow weight gain.  I hope she doesn’t have this too...  Celiac like diabetes is a auto-immune disease.

Day to day isn’t much different.  Some good days and some bad.  Last week Arden was hypoglycemic four days in a row.  Each day at the exact same time.  Then it just stops... so weird and unexplainable.  It’s the reason she get tested so often everyday.  You just never know when her BG will go south unexpectedly.  She got pretty low the first day (28) but she did a great job of drinking and eating and we were able to combat the insulin peak.  She is such a trooper!  She choked down cookies and a sandwich even though she wasn’t hungry and couldn’t stop crying (because of the low BG).  When she leveled out she said, “I’m sorry for crying... I just couldn’t stop.” 

We had to stop giving her injections in her arms because deposits of insulin were forming.  She is now getting more in her thighs and butt (which took some doing).  It’s hard because there aren’t many fatty areas on her body.  

Diabetes a side.  She is getting very excited for Christmas.  We took a train ride with Santa last weekend and just completed her second session of pre-preschool!  She is going to join a new class in the spring.  

We may have one more announcement this year but just in case that doesn’t work out... I’ll wish all of you a Merry Christmas, Happy Holiday and Peace filled New Year now.  Thank you for supporting this site and please look for more to come in 2008!  

There are santa train pictures are in the Scrapbook section.

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

Scott

UPDATE: 

I just received this email from Arden's Nurse Practitioner...

Hi Scott,
I just wanted to let you know that the Celiac results for Arden were
negative.  We will repeat next year.

Thursday, December 20, 2007 - 12:37 PM

Meg

Love this picture of Arden!  Thank God-- No Celiac Disease!

Monday, December 31, 2007 - 10:25 AM

Your Donation at Work!

The JDRF does more then diabetes research and education. They also lobby our representatives on behalf of diabetics.  Their program (JDRF Advocacy) has been working tirelessly this year to ensure Congress voted to extend the ‘Special Diabetes Program’...

I’m thrilled to tell you that it was passed today by Congress and is fully expected to be signed by the President when it reaches his desk!!!  The program faced a 35% reduction had the bill not passed.  

JDRF Advocacy isn’t planning to rest after this victory.  

From the JDRF:

“You should also know that our job is not finished, and we will all need to return after the holidays with a renewed focus to work with Congress in 2008 to complete the job of securing a multi-year extension for the SDP so that the dollars can be spent in the most effective way.”

In a very real way the $10, $50 or $100 dollars you donated helped secure 150 million dollars in aid.

Other News:

The JDRF recently released the 2007 walk totals for our area.  The Philadelphia and Bucks County sites raised a combined 1.7 million dollars.  I wanted to thank you all one more time for your efforts.  Last year we helped raise $1,800 and this year $8,311... who knows what we’ll be able to do in 2008!

Thank you!

Build-A-Bear

Build-A-Bear Workshop just announced the arrival of Rudolf and Clarice for a limited time.  I’m only passing this information along because it gives me the opportunity to remind everyone that Build-A-Bear offers a special Purple Satin Heart for your child’s doll.  The heart costs a dollar but the entire dollar goes to the JDRF.  

Some store don’t do a good job of advertising the heart so you may have to inquire with the manager.  The last time we took the kids there I bought a heart for every kid in the store...  It’s a great feeling and a great way to show your kids the personal reward you get from philanthropy!

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

Scott

The principle of Cole's school recently gave me $25 to send to the JDRF.  So we decided to buy 25 hearts at Build-a-Bear and give them away to the kids in the store.  It was a very nice moment...  Try it!

Saturday, December 22, 2007 - 10:29 AM

An open letter to our representatives

As a part of the JDRF’s ‘Advocacy in Action’ campaign they asked myself and others to share what life is like for us with type I.  They forward the letters to congress.  Below is my letter.  Please feel free to add your own message in the comment area below.

"My three year old daughter has type I diabetes. We chronicle her life on our website www.ardensday.com. I believe that one of the keys to finding a cure is transparency. Transparency is the path to understanding. Frankness while uncomfortable is paramount if we’re to have honest discourse.  And only that kind of raw conversation will move us closer to a cure.  

Without an accurate concept of what a disease like diabetes does to a person you can't properly fight for those who are stricken. It's my goal to remove the misconceptions about my daughter's disease and leave people only with the visceral experience of what our life is like. The shots and finger sticks are just the beginning. I've watched my little girl have two seizures and I spend every second of my life trying in vain to mimic her pancreas well enough to keep that from happening again. That's my life. I'm Arden's pancreas.     

As I write this Arden is sleeping. It's 9 pm., three hours since her last shot and an hour since I snuck into her room last and checked her blood sugar. If I did everything right her BG will be between 100 and 150 when I check her again. Then I'll just sit up until her BG goes up enough to give her the insulin she needs to keep her in a safe range overnight. You know, so she doesn't loose a limb or the feeling in her extremities or her sight or have a heart attack before she's 40 years old. The best part is that even if I do everything correctly it doesn't ensure that those things won't happen anyway.

I invite any and all politicians to spend a day with Arden. Live in the constant fear that I'm surrounded in. Experience the insane pressure of injecting a drug that if measured incorrectly will throw my baby into a seizure. Every three hours, 24 hrs a day, every decision I make is paramount. Too much insulin is a seizure, too little and she'll suffer catastrophic physical effects. Then at the end of the day we can sit down together and figure out why everyone is so comfortable playing politics with our children's lives. Maybe then you'll cast a real vote to find a cure.       

You want to know about my life with diabetes?  It's a lot like my life as a democrat. It's full of horrendous pain & disappointment on every level you can imagine and a hundred you've never considered. 

I beg you, do something. You're spending more time pretending to help then it would actually take to help.  Stop pandering to the fearful.  Do something real and I'll celebrate your bravery forever."

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

arden's grandmother

I am Arden and Cole's grandmother and I have seen Arden with low 
blood sugar and it breaks my heart. Diabetes effects the whole family
and I have seen her brother (who is only 7) try to help her. I want to echo my son's
wish yhat each member of congress spend a day with Arden and then go back to congress

and vote for more money for JDRF for research
for a cure for this disease. Thank you!

Wednesday, November 14, 2007 - 07:28 PM

Updates

- The scariest holiday of them all (for a diabetic) Halloween was actually pretty painless.  Luckily Arden isn’t a big fan of candy.  So it’s more about the trickin’ and treatin’ then the eatin’.  I added a few pictures from the night to the ‘scrapbook’.

- Donations have been trickling in this week.  Bringing our total to $7,111!

1. - Our meeting with Senator Lautenberg has been posted on the JDRF’s advocacy website.  Here’s the link. 

2. -  If you live in New Jersey please remember to get out and vote on Tuesday and please vote for a candidate that supports funding and research that will one day cure our children and stop their suffering.  Also please vote YES for‘Public Question #2’.  Question #2 asks if you support more funding for stem cell research.  If you live in New Jersey please vote yes!  The ballot language can be foundhere.  

3. -If you are looking for a political conversation about the issue...  There is a great dialogue going on at Things I wish Democrats Would Say.  You can get involved with that conversation by clicking here.  The blog is run by an Arden’s Day reader and supporter.

4. -I’ve created some Arden’s Day wallpapers and you can download them here.

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

   Adam

   Just voted!  It's my pleasure to vote for science, for opportunity, but most of all, for Arden.

   Tuesday, November 6, 2007 - 10:31 AM
   Scott

   Thank you Sarah!  Arden and I are on our way to vote right now!

   Tuesday, November 6, 2007 - 01:08 PM
   Scott

   Question - 2-Stem Cell Research - Ballot Issue
   
   Precincts    Yes                  No
   6210/6289    601,343-47% 680,828-53%
   
   Thanks for trying!

   Wednesday, November 7, 2007 - 06:47 PM