Monday, July 27, 2009

Juvenile Diabetes Research Foundation

We have gotten a lot of support in this new journey.  I'm thankful for that and know that it helps to know that others have walked this path and are here to answer questions, listen, sympathize and understand.

One of the supports we have is from the Juvenile Diabetes Research Foundation  We received information about them while we were in the hospital.  I had not yet initiated contact though when I received a call from our new case manager at our insurance company.  I'll admit, when I first heard it was someone from insurance, I was fearful of hearing that we were being denied services or coverage.  The gal I spoke with was nice - and knowledgable about diabetes!  It was very refreshing.  She talked with me about the things I needed to do - and then followed up with an email listing websites for various services.  Really nice!

She followed up our phone call the next week to ask if I'd talked with anyone from JDRF.  I hadn't.  Well, she called them and spoke with someone who then called me!  This gal from BCBS (insurance) is on the ball!  I spoke with another mom that helped to answer questions and talked with me about the mentor program.  They will match us up with another family with a boy similar in age to Joshua.  That will be nice.  I know he will enjoy meeting another boy that also has diabetes. 

I sent in a form to JDRF that we received in the hospital.  As a result of that, Joshua received a really nice surprise in the mail!  It is the JDRF Bag of Hope. 



A backpack filled with things.  The backpack even has a cooler compartment in the back that he could use to carry his meds (or a cheese stick which is what he likes putting in the cooler when we go out).  The backpack has the JDRF logo on it.

Here are some of the goodies inside.

*Rufus the bear - who is wearing a medic alert bracelet.  He has patches in the spots where you get pokes and shots.

*Story book about Rufus.  The story is about a boy diagnosed with diabetes and his mom makes this bear "with diabetes" so that he has a friend that understands. 

*Pink Panther First Book for Understanding Diabetes

*Cartoon book called CJ has diabetes.  One of the facts from this book is "every hour someone finds out they have diabetes". 

*DVD called "You Can't Catch Diabetes from a Friend"

*Coupon for a local science museum

*Carb counting book

*Glucometer

*OmniPod Demo Kit - a pump so Joshua can see what it is like. 

*LOTS of pamphlets and brochures on carb counting, wearing a pump, advocacy, research, hypoglycemia chart, JDRF magazine, diet and portion control and more!

This is incredibly nice.  I know it helps to have the information and even in reading the books to know that the emotions are all things others have felt too.  I have to say, that I cry reading these books still.  There are times when I just can't believe he has diabetes.  There are still times when it is hard for him.  I hang out with him most nights until he goes to sleep as night is typically the hardest time of day.

Today has been a challenge today because Joshua woke up feeling badly - and soon got sick.  Again.  He ended up being sick in the morning and then slept most of the afternoon (and also had a short nap in the morning too!).  After lots of sleep, he felt much better.  Was able to eat dinner.  Then after dinner, Christopher got sick.  *sigh*  Surely this will all be gone soon.  I'm really hoping it doesn't make the complete rounds.  Praying for wellness and for it to be short-lived sickness.

Sorry my posting is so sporadic these days.  I'm trying to catch up on my records for Chrisopher's past year.  (Yes, behind)  Trying to plan for the upcoming year.  Working on getting things started with our FIAR support group.  Planning our field trips is the biggest item there.  Juggling therapies - we are up to 6 per week now.  Trying to implement a budget.  Working on chore charts.  Oh, and learning to count carbs, measure carefully all the ingredients in dishes and what is served and just in general diabetes care.  I know we all have full plates.  Some days mine seems to be running off the sides.  In it all though, life is good.  I'm richly blessed and thankful for much!

Blessings

Leslie

5 comments:

  1. What a wonderful bag of stuff! You are so busy! Don't forget to take care of yourself as well. This is a very busy time of year getting everything in order for the next year. I remember the days of therapy 6 times a week. We are down to 3 a week when we are not in a Tomatis loop (every other month). I am so glad you feel blessed through this trial. That helps you move forward. Our prayers are with you.

    Blessings,

    Dawn

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  2. Neat package! My daughter was in patient for several days for high sugars. For her it is a autonomic issue and not diabetes. But that left us knowing how much you go through everyday. My heart goes out to you and your son.


    I have 5 kids with a genetic issues. I host the special words for special needs on the Company porch. I hope you stop in!


    God bless

    Heather L

    www.specialneedshomeschooling.com

    ReplyDelete
  3. Still praying for you and your little guy.

    Love and prayers,

    Edwena

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  4. healthyhomeschoolAugust 1, 2009 at 2:59 AM

    Oh, Leslie. I'm sorry you have sickness going on again. Sigh. I wish I could make it go away!


    The bag full of things from the Juv. Diabetes group is excellent! That is a special something for someone dealing with A LOT. He's doing a great job, and so are you. He looks very good in the picture. I think his body is still adjusting and I pray that it just gets better and better for Joshua.


    I know what you mean about planning. I have a ton of books to order, and on top of that work is crazy right now as we implement a new program, but it's okay! I just take a deep breath and say "this too shall pass."


    I'm working today but will e-mail you soon. I want to start in August and work our Ambleside in by following along with the Terms they have set up on line, and I think that starts in Sept. I want to have a smooth transition into full AO.Thank you for all you do.


    Love,

    Lynn

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  5. I just found your blog looking at workbox systems and look forward to reading more about your family.

    Beverly www.adventuresofhomeschoolingnoah.blogspot.com

    ReplyDelete

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