FFL 2013 (Friends For Life, Children with Diabetes Conference in Florida)

FOOTNOTE at the top: I haven't typed a word on this blog since this post 2 years ago which I never posted. Posting now. Thanks.


We are really here! It's already two been two full days. Fantastically full days. Riley has spent so much time at the sports center yesterday and today with friends, could this be the Friends For Life that they speak of?

On the airplane flying to FFL 2013

What we've done so far, in a nutshell:

He has also been hooked up to a pump for a two day trial with saline running

R: kids' Moms and Dads are freaks...you aren't like that.
M: I'm not? THat's the one thing I've learned so far
that I need to get off your back.
R: You aren't on my back, you're good.
M: Really..Im a pain in your neck, aren't I?
R: No.
R: What about the April Debacle...well that was just me being stupid.
Since then, all's good.)

M:  How was the trip to the theme park?
R:  Good, no big deal.
M:  What did you eat?
R:  Just regular food and in the afternoon, we had cotton candy and I totally nailed it!
M:  Nailed it to the wall, I hope.
R:  huh? A whole bag of it was 120 CHO and I dosed for it and on the bus on the way back I felt low, so I tested and I was 93! PERFECT!
M:  You ate the WHOLE bag?
R:  No! I just snacked on the other kids' bags in our group.
M:  So you nailed a cotton candy graze-fest?
R:  YES, yes I did!
M:  AWESOME

Back Up's Back Up Fail

Using back-up tester and back-up-back-up strips
for ridiculously large pizza that will screw
with bg numbers all day

One of the first five things we learned after Riley was diagnosed was to over estimate everything you think you need for diabetic supplies when you travel. If we are travelling for a week, take two weeks worth of supplies. Three days, take 6 days of stuff. We have pretty much stuck to this rule. However, many of our trips in the last two years still have failures like having all the supplies in a separate bag for a day trip, but leaving the regular kit at a restaurant along the way. This scenario should work out except that for a day trip, I didn't pack extra insulin pens. So, the only insulin is in the regular kit at the restaurant 40 miles back. That is just one story off the top of my head.

This trip was no different. The iBGStar stopped working right before the lunch check on Tuesday. No problem (except, why is this the second time the iBGStar has crapped out in a year?) we have a back up. Riley's old One Touch glucometer is packed with all the supplies. Wait, Houston-we do have a problem. There are only 2 test strips left in this initial bottle that only comes with 10 test strips. No problem. In the supply bag, we have more test strips....for the iBGStar! ugh Foiled Again.

Solution: #1 Call Rite Aid Pharmacy back home and have them call a pharmacy at the beach to refill original prescription from diagnosis day? No. That prescription would be expired so the pharmacy would a. call me back to contact my doctor for a new one or b. call my doctor for a new one. We use mail order pharmacy now (up to date prescription) and I was not going to choose the option of contacting them. #2 Call Pediatric Endocrinology doctor offices - they probably get calls like mine all the time from people who go on vacation and smugly think they are prepared. Pick this option! They returned my call within an hour to double check the phone number for the beach pharmacy (she couldn't hear the number clearly though I left it with my message while looking up the number on my phone while leaving the message with my phone) Maybe use two phones, one to look stuff up and one to speak into?

New plan (because everything follows my plan): Use one of the 2 last test strips to test for a low before dinner and then the last strip for the dinner test. Perfect.  Go to the pharmacy and pick up the new test strips prescription for a total of $285.34. Whaaaat? Wait, I only need enough to get him home to vast supplies of One Touch meter strips. You don't sell test strips by the day, you say? Ok, how about just one box? Technically, we need 6 - 8 strips a day for 4 more days (barring a catastrophe that keeps us "stuck" at the beach for longer), that is one bottle, plus one more to be prepared. Oh, one box of test strips has four bottles in it, how much will that be? Hey look over here, we could buy three Mini One Touches at the special price of $9.99. That's only $30! Too late, the kind pharmacist has already fixed my prescription to one box and it's only $135. Ugh...we should have bought 3 more Minis and called it a day.

Infusion Set for Two

He was not impressed that I took a cannula bullet with him.

Riley and I went to Pump Education Session on Monday. He was just humoring me by going, but he didn't think it was funny. By the end of the second hour, he was interested in trying out an insulin pump. He even let the Nurse Educator attach an infusion site - not sure if that's the right lingo, is it site or set?

I figured he should try it out on his arm where he prefers to do his injections since he had already tested it out on the belly back in February at our last quarterly Endo appointment.

The nurse was wonderful. We think we met her briefly at our first visit the day after Riley was diagnosed by his pediatrician. This time, she saw Riley's façade of angry teenager and patiently brought out the curious, willing spirit in him.  The doctor was also pretty wonderful. Considering we only see her for about 6 minutes every 4 four months, she actually sat and talked to Riley about how hormones effect insulin absorption. She even had a pat on the back for his mom who teared up when explaining that Riley was so upset by our reactions to high numbers, he'd rather lie. On a side note, his A1c was down. By .1! Yes, that is a point in front of the one. This was the first decrease since he came out of the honeymoon one year ago.

Back to the pump - He thought the t:slim was very cool with it's touch screen technology. Not waterproof, but user friendly was the word on the streets of the pediatric endocrinology clinic. The very coolest thing is that he will be able to try one out at the CWD Friends for Life conference this summer! So, we have officially taken the first step to Insulin Pump attachment: two weeks of food logs to be sure we can carb count with the best of them. Today was day one. If we stay on schedule, we will be able to fax the logs to the nurse on June 17th.

Better Than Candy

So tired of lows, I had to find something
 better than candy (say what?) to give Riley
while trying to fall asleep at 113 mg/dL

This week....

Mon
 7 am    123
11 am   120
 4 pm      62 - mowing the grass at home after 2:00 pm PE class at school. Eat starburst, tangerine
 6 pm      78 - eat grapes, few pretzels
 9 pm    113 - refuse to eat anything while laying in bed. Tempt with off brand but cheaper Nutella right off the spoon and chocolate almond milk. Only drink half of milk)

Tues
7 am    138
11 am  84
5 pm    84
9 pm    80

Wed
  7 am     105
11 am      88 - felt low in English class; didn't test,
                       ate Smarties. Apparently was correct.
  5 pm    373 - ate celebratory cupcake in Math class; didn't test or use insulin. Corrected with 6 units.
  6 pm    132 - fast drop. Now doses 8 u for dinner and heads to pre youth group game of football.
                        fumble...laying on the ground...."mom....get me some sugar" Can't find any,
                        already ate the Smarties I packed in his bag this morning. Find 3 cookies in the
                        kitchen, chased by 4 oz give/take Mountain Dew.
11 pm     163

Thurs
7 am        86
9:30         52  checking messages as I leave a special chapel at the school. Riley left a message.
                      "Hi, mom. I'm in the school office, I felt low. Tested and it was 52. I ate some
                       Starbursts and rechecked. I was 43. Ate some more stuff." I turned around and drove
                       back to school. Called the office. They put him on the phone with me. "I'm ok. It's 108
                       now. The secretary wants me to sit here a few more minutes then I'll head back to
                       class."
11 am     108 
 2:50              School secretary calls me as I'm walking into a meeting. "Riley felt low again but
                      didn't want to miss his bus. I gave a handful of Reese's peanut butter cups and he
                      ran out. I thought you should know." Oh Lord help me. Help him. I text him.
                      "You ok? Eating candy?" No response. Text my husband. "Riley's low, headed to
                      bus, has some candy, check on him." Oh crapppppppppppp. We took away Riley's
                      phone three weeks ago for lying about his blood glucose numbers. I have no way
                      to know how he is until the bus arrives at our house at 3:20.
3:35               Bus finally arrives, fifteen minutes late. Not because of a diabetic episode  of the
                      cute kid with glasses and dimples. Tim texts me. "He's fine. Eating tangerine."

Questions:
Why is he riding the bus? Whose idea was that?
Who thought an appropriate punishment for T1D was phone deprivation?
Can I work and text and freak out all at the same time?

You Have Got To Read This Book

Buy Now

This book was mailed to me before I was able to jump on the opportunity to buy it. I picked it up on Sunday afternoon and finally put it down at 1:30 am. It’s that good. I highly recommend it. 

It's a true story of God's faithfulness and a mother's faithfulness to her son, Ryan and her family. Ryan was diagnosed with a heart condition while his mother was pregnant with him. He was not expected to survive to 20 weeks gestation. Leighann Marquiss is this mother, my cousin and beautiful writer. You can check her out at her blog, too.

  

It's All Fun and Games Until Somebody Gets Hurt

Riley started baseball back in March. Practices are two hours every day after school unless there is a game, which doesn't involve a lot of exercise because sitting the bench is easy on the blood sugar. We noted excellent blood sugars. Nothing out of range. We even were able to reduce his insulin to carb ratio. 

I was envisioning the rest of Riley's life as being this smooth. He would take a jog each morning before work or evening after work and have steady blood sugars right around 100/110 all the time in my fantasy. We got this, I thought. Why aren't people writing books, articles and blogs about this, I questioned myself.

Maybe because it's a crock! 

Through a weird line of questioning about the vegetables Riley ate when he was left home alone which required him to make his own dinner, we discovered it's all been a pack of lies!

From April 1 to April 7, there were 6 bg's in range! SIX. So not only was daily exercise not affecting his blood sugars as we thought it was, he was high for almost three straight weeks. An while he was having these high readings, he would look me and his dad in the eye and say "110" or "97" or big-fat-lie-of-a-really-good-blood-glucose-number-inserted-here-between-these-quotes.

I couldn't speak or look at him during the speech his father gave him. The one about your life being precious, this disease is serious, you can't play games, do you know what happens to your body with prolonged exposure to high blood sugar? It was like my head had been smacked off shoulders by the one I loved most a huge amount. There was literally pain in my chest. I was hurt. 

We never dreamed that he could lie about the numbers or that he even tested. What kind of parents are we? Why were we so trusting? Wait, we had no reason to suspect that he was capable of this. Why is he capable of this?

Science Project

Riley is required to do a science project every three years starting in 6th grade. Three years ago he worked with the flight of paper airplanes: did the construction of the aircraft make it fly further? This year it is to be the effect of carbohydrates on blood sugar of a person with Type 1 Diabetes.

His plan is to eat 15 CHO of Starbursts, 15 CHO of Cheezits, 15 CHO of pizza. Three of his favorite things.

Speaking of favorite things...It is difficult for Riley to save the Skittles and Starbursts and snacks I pack in his bags for lows. He eats them because they are there and they are delicious. This week it occurred to me to get candy and snacks that aren't particularly tasty. (Smarties, yogurt covered raisins and peanut butter crackers) Made me wonder how we got to this fork in the road. Back when he was first diagnosed, there was nothing we wouldn't do (sorry double neg) for him and we would spoil him in every other way.  I am sure that this is a common phase for parents of recently diagnosed T1D children. Right??? We'll see if these candies and snacks stick around longer like until they are needed. That's my science project.

Back to the science project...

This is not what we were expecting. Thought there would be a spike after eating these items without insulin coverage. Was that just wrong expectations? Maybe I was thinking of eating an entire meal then wonder why bg is 350 and realize he forgot to inject. Or maybe because the long acting insulin is at the perfect dosage rate. Or maybe because the insulin on board is still working even though these were all done at least 3 hours after a meal. After further research - looking at what I just typed into the chart- I see that each product actually did cause a blood sugar increase of at least 40 points. The chocolate covered peanutbutter egg is the fastest acting, hitting the highest max at the shortest 30 minute mark. Interesting also that Cheez its took the longest to max.

I'm not sure what Riley's hypothesis is and what he hopes to learn from this research. I offered to test at each interval to show the difference between diabetic results and non-diabetic results. He wasn't interested. I'll let you know what he does with this data.