Our D-history:

My daughter, *Rosie, was five years old when she was diagnosed on September 19, 2008, with Type I Diabetes. We started out on MDI, but in October 2010 we switched to a pump. We also added a Dexcom CGM in May of 2011. In February 2014 we changed to the Medtronic Enlite system- a pump and CGM all in one.

*Rosie is not her real name... I let her pick her own pseudonym for the blog!

Sunday, September 23, 2012

The Monster Doesn't Sleep

Once in a while, I wish the outside world would see the nighttime side of Diabetes.   The side that had my 9 year-old crying in her sleep and hiding under her pillow last night at 12:30am as I changed both her Dex and her pump sites, wrestled with changing a beeping pump battery, and tried to soothe her back to sleep.   

(BTW, I learned last night that the break-away piece on the Dex inserter is exactly the right size to slide in the slot and twist open the cap on her Minimed pump!)

I went back to my bed and laid there awake forever, pondering where in the world that 432 had come from and wondering how many other children have to endure such rude intrusions to their sleep.     Most of the time we tolerate it, we put it in the background, and we move along with life.  But nights like last night... my mind starts going and I lay awake getting more and more angry at this monster in my child's life.

Nights like this make me really glad that we've got the JDRF walk coming up soon.  Seeing so many people in one place, united for a CURE, gives me hope that one day we will find it.  Won't that be a great day?


Wednesday, September 19, 2012

4th D-iaversary

Four years.

Four years ago today was one of the scariest days of our lives. (It's a three-way tie with the day each of my two preemie children were born.)   Rosie was five years old and we knew something was wrong, but we didn't know what.  I've written out the whole story already... you can read it HERE.   I still can't retell the story of that day without crying. 

Every year on this date the events of that day replay in my mind.  I'll glance at the clock and think, "yep, this is about the time we got to the doctor's office", or, "we were sitting in the ER by now".  

The good news is that, four years later, we've managed to tame this D-monster somewhat.  Highs?  Lows?  Crazy cures proposed by strangers? Yeah, we can deal with those. 

We still pray for a cure, but until then, D is just a normal part of our lives now... and we're OK.


Monday, September 17, 2012

Pump-less Cheerleading

Rosie has been active in several sports since her diagnosis: softball every Spring, Taekwondo for a few months, and one season of basketball.  For each of those activities, she was comfortable leaving her pump on, as long as she was wearing a pump belt that zipped shut rather than using velcro.  (She worries a lot when she wears her one belt with velcro compartments, so she very rarely wears that one.)

Last week, she started cheerleading practice.   This is new territory for us- I was far too shy to have ever been a cheerleader when I was her age!  She's very excited to join a few of her friends in cheering for the boys' basketball teams at her school.

The first practice was an hour and a half, and I stayed in the next room the entire time.  After about ten minutes of jumping and kicking, Rosie came to tell me that her pump was bouncing around a lot and she wanted to disconnect.  Of course she was running high that night, nearly 300 when we'd left the house to come to practice.  I did some quick mental D-math (high + just bolused + no pump + constant movement = should be OK?) and we disconnected her.  

It worked out great.  She was back in a normal range when we got home, and she felt fine.  Later that evening she went low, as she is prone to do about two hours after a lot of physical activity.  We caught the low, treated, and moved on.  

Now I just have to figure out how many extra carbs she'll need on the nights when she's not starting out high...

Saturday, September 15, 2012

Diabetic Pirate Octopus

This will be our third year to participate in the local JDRF chapter's Walk for a Cure.  Every year I am overwhelmed at the amount of people who are there supporting our Type I's and doing what they can to help fund a cure.

 Our  team name is The Sugar Sharks.   The first year our shirts were black with a big shark on them.  Last year the shirts were purple with the JDRF sneakers. (Those shirts were printed in full color and proceeds went to another JDRF chapter- but sadly, I couldn't find their site this year.) This year, we were aiming for a pirate theme, but I was having trouble finding a pirate picture that wasn't mean-looking or showing a pirate carrying a bottle of alcohol.... neither one would be appropriate for the younger kids on our team!  

So what did we end up with?   Well, a diabetic pirate octopus, of course!  I found a picture of an octopus wearing a pirate eye patch.  We thought that was pretty cute.  Then, I discovered that there was a picture of a vial of insulin and a syringe... and it just happened that the octopus could be positioned to look like he was holding them.  Bingo!    We added a small picture of a shark, swimming towards the octopus, and the shirts were done.  Rosie chose dark red for our color this year.

As of yesterday, the UPS tracking shows the shirts were in a city about an hour away from our house.  Hopefully today we'll be able to model our lovely team shirts!

Monday, September 3, 2012

4th Grade

After four years of battling the incompetent school Clinic Aide, I finally feel like I "won" this year.   

I met with the Principal a few days before school started and we talked about my request to have Rosie removed from the Clinic Aide's care as much as possible.   I went to the meeting armed with my ADA paperwork, a lengthy list of complaints about the Clinic Aide, a sample 504, etc.    

It turned out that I didn't even crack open my folder- the principal could not have been nicer.  She was happy to let Rosie test in the classroom (Clinic Aide was always opposed to this), let Rosie treat her lows in the classroom, and even have a teacher in the cafeteria double-check Rosie's carb counting after lunch, rather than making Rosie go back upstairs and wait for Clinic Aide (while missing recess) to do it as she has in the past.   My only complaint was that we didn't do this sooner.... this was a much different attitude from the principal than the last time I met with her!

Basically, the only time Rosie is going to the clinic now is when she needs Ibuprofen or when she needs to call me about something with her pump.   It is SOOOOOO much better!   There have been a few minor bumps, such as Rosie forgetting to bolus a high one day, but for the most part, this system has been working out really well. 


Prayers for the Schuhmachers

My heart is heavy today with the loss of someone I never met in real life.  Ryan Schuhmacher, husband of Meri, father of four boys (3 with Type I), passed away yesterday after a six-month battle with brain cancer.   

If you're around the DOC much, you most likely know Meri from her blog, Our Diabetic LifeOr you might remember me asking for prayers for them before, back in March.   Meri's blog has long been one of my favorites.  Their family has an amazing strength and spirit.  There are days when caring for one Type I child has overwhelmed me... I can't imagine having three, yet Meri takes on that challenge with grace and strength.

Ryan and Meri fought this cancer with everything they could- prayer, trial medicines, and every treatment they could possibly access.  The day Ryan passed away had been set aside as a day of fasting and prayer for Ryan.  As the family posted on Facebook..."Ryan passed away this morning, peacefully in his family's arms. Our miracle was that he did not suffer. Thank you for your fervent prayers."

My prayers go out to Meri and the boys today.  Their life was already complicated enough, and I know it will take a lot of faith to get them through this tremendous loss.  Please join me in praying for the Schuhmachers.