So...Jean-Paul has been home from the hospital for a while now...  we are finding that the diabetes is much more managable than we originally thought.  Fortunately, our son is still the great kid he always was.  He has hardly shed a tear over all of this... other than a small incident regarding some pie that his science teacher brought in for his class.  Pie is important to Jean-Paul... :-)  Tomorrow is Halloween.  It will be a big test for him.

 

Marc and I have become proficient in giving injections... not as difficult as I thought provided that no squirming is involved.

 

The thing that I really struggle with is the organizing, administration and the papers.... My son who was always an amazingly healthy child now needs a lot more appointmenets to maintain his health... eye exams, visits to the care team at CHOP, a nutrtionist, Diabetes education, flu shots...  thank god for Outlook and e-mail.

 

We have to plan a lot more when we leave the house - juice - check; glucose gel - check; blood sugar monitor - check; snack - check; etc. I think I need to keep a small bag packed with his stuff and teach him to take it everythime he leaves the house.

 

Then there's the paper...I am buried in paper related to managing his diabetes.  There are all of the carbohydrates counting sheets...one for breakfast foods, one for halloween candy, one for birthday parties (cake with icing has a lot of carbs!!!!); the ever changing instructions from his care team; the spreadsheet that we track his bloodsugar with (we have this on-line of course as well); the manuals and instructions for the blood sugar monitors; the reference info that the hospital sent as well as the info from the JDRF; all of the prescription refill info....I could go on, and on and on...

 

I spent an hour today organizing my son's blood sugar information to send to his nurse.  We have almost all of his info on one of his blood sugar monitors (the Onetouch) but he gets tested at school as well.  The school nurse e-mails us the info on most days.  it needs to be included in his tracking chart.  Fortunately, she uses e-mail and can open an excel file.  We tried the software that came with the monitor... it crashed a few times when Marc tried to install it... I guess he'll be sending J&J a little note :-)

 

I want this all to be on-line.  It should be.  Marc is playing around with a sharepoint site for the family just so we have a place that we can share the blood sugar spreadsheet that we are using... I want to be able to give our care team and the school nurse access so that they can see his blood sugars.  I hope we can make this work.