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.                                    

 

Things Said While Low

Low caught on camera last week during school.
This is the health room. A buddy walked with Riley
from chapel. Eating goldfish, after fast acting carb.

Riley:  Can I have that knife?
Me:      No
Riley:   Like...forever?
Me:      huh?
Riley:   Well I'm gonna have it. When you are dying, you're gonna call me to you and say "Riley I   want you to have this knife."
Me:      This Cutco paring knife..you want to inherit this?
Riley:   Yes

                             AND

Riley:   Mom, let's go out on the prowl!
Me:      Huh?
Riley:   Isn't that what you say? You know go out shopping and stuff? I wanna buy some stuff.

AEP Meeting

We got called into a meeting for an Adapted Education Plan at Riley's school. I'm not sure why March 7th was the date for this since he was diagnosed almost 1 1/2 years ago. The only thing that stood out during this meeting with all of Riley's teachers sitting in classroom desks in a circle that included the student support teacher, Riley, my spouse and I, was that he was eligible for accomodations but not modifications. Wait...What?? Modifications mean modifications to his grades. I want that! Can I sign him up for that?

I'm pleased with accomodations.

• Student is permitted to keep all diabetes supplies with him and test during class if he feels low.
• Student is permitted to eat if necessary.
• Student is permitted to carry and drink from a water bottle and have access to the restroom.
• Studnet will be permitted to make up quizzes and tests when missed for diabetes related issues.
• Teachers will be familiar with Emergency Plan to deal with lows in the classroom
• Teachers will have Smarties in their classrooms.

But I really want grade modifications.

• Student sometimes is lousy test taker - increase by one letter grade.
• Student not so proficient Spanish I - increase by two letter grades.
• Student forgets to bring study materials home for big History test - give passing grade of any letter.
• Teachers find student so interesting, witty and pleasant - give A+ whenever possible.

Left Field

 Endo appointment went well. We didn't actually meet with the doctor. Their new schedule plan is to alternately meet with the doctor one month then the Nurse Educator the following appointment in four months. And the Diabetic Nutrition Specialist at each visit. Ho- hum meeting with nutrition nurse. Sharpened a few ratios, suggested more protein in the diet and we were sent back to the waiting room for the next meeting with the CDE.

I was excited when my favorite nurse came and sat to check in on us. Our scheduled CDE was with a new patient so did we have any questions for f.n.? The DNS covered everything....except she generally asks about Riley's interest in the pump each time we meet and he categorically says no before she finishes her sentence. I suggested f.n. go through the same motions with him. He replied as expected. F.n. asked, "Why not?" Riley described some ridiculoulsy bloody fear that the pump's needle would get accidentally torn out of it's spot and rip his skin apart half way across his body and be totally disgusting. F.n explained with the help of a set of twins that were sitting in the waiting room with us wearing their
pumps, that there is no needle attached to the pump. It may get pulled out, but it wouldn't hurt too bad.

Favorite Nurse-taking advantage so quickly that
I'm surprised I was able to get this picture

The twins were funny. "Yeah we wrestle, yeah we get hurt, but not from our pumps."

Brilliant f.n. (favorite nurse) asked Riley if he would let her  attach an infusion set. Riley looked at me and said, "For the new xbox game." I said .... yes! I had just said no fourteen times before f.n. arrived.



Attached to nothing but courage

We were whisked into an exam room, f.n. grabbed a couple supplies and before he could object...wisk, bam, boom.

He was very proud of himself, as was I.  Such a closed mind opened in a split second. It was right out of left field. I rather like it there.

Camouflage

Not actual bag...stand in that
doesn't make me cry

Another child at our school has been diagnosed with Type 1 diabetes. That brings the total to 5. There are only 300 and some students.

I stopped by my daughter's lunch table to say hello and see how the newly diagnosed kid was doing. I had to say something. I saw the camouflage bag. I asked him how he was. "Good, my mom just stopped by to check on me. I'm fine," he said.

The camouflage bag. Something caught in the back of my throat. I couldn't finish my sentence.  I just wanted to know how the transition to school was going. There was no stopping the quickly forming tears. I couldn't speak.

Endo Appointment Looming

Throwing caution to the wind right before Endo appt

Not to be a band-waggoner. But, I do not want to go this quarterly appointment. I used to look forward to these appointments. During the honeymoon phase, the topics were light coffee table conversation that felt more like a light applause for catching on so well.

Now it's all "that a1c is sure coming up" and "you have to have tried to inject in your belly once a week by the next appointment" and "do you know that Nutella is all sugar?"

It is making everything stressful.

Me: The numbers have to look good for the doctor, Tim.  We have to get the carb:insulin ratio right, right now!
Tim:  I know they were high when Riley was sick, but they're better now, right?
ME:  NO, no they're not. Did you see that 464 the other night?

Me: Riley, what's up with the 464 the other night?
Riley: Um..I dunno. I didnt want to tell you because I know you'd freak out.

Where does he get this from. ..me..freak out?!

Then, last night 130 at 9 pm before bed and 59 around 10 pm. That's just stupid.

Plus, I may have said some things that sounded like other people (Tim) need to pay closer attention while I'm working so much these days right before the quarterly Endo appt.

Cold Caught

138 Fri breakfast
255 Fri lunch
301 Fri dinner
343 Fri bedtime

211 Sat breakfast
397 Sat lunch
262 Sat dinner
260 Sat bedtime

222 Sun breakfast
247 Sun lunch
248 Sun dinner
232 Sun evening check
266 Sun bedtime

240 Mon breakfast
202 Mon morning check
306 Mon lunch
  84 Mon afternoon check

Riley got sick over the weekend. You can see where it started on the schedule above. Right between breakfast and lunch on Friday morning. Sore throat, croupy cough, no fever though.

Then he got better. Sometime Monday afternoon. Or maybe we finally got the insulin carb ratio right to cover the insulin need during his cold.

Difficult to dose now. At dinner we kept the same higher dose, thinking we got it right as shown above. But after two hours, lots of loud carrying-on (symptom of low for Riley) - he was 71. Ate 10 CHO homemade protein bar, tested 70 bg. Ate Belvita 36 CHO and chocolate almond milk 13 CHO, at bedtime he was 180. This morning 240. So...still fighting cold or need to up Lantus??? Then send him to school and hope for the best, ughhh.

Wrap Up

This week included:

• Mid Term Exams for Riley (Bible, Math, History & English)
• Eye doctor appointment for Riley
• Girls group meeting for Reid and I (American Heritage Girls)
• Dental appointments for Riley and Reid
• Business travel out of town for Tim
• 9:00 pm indoor soccer game on Saturday night

Highlights:

Studying for exams with Riley is like .... something I can't describe. I never want to do it again. But here I sit taking a break from Spanish and science quizzing/study assistance. And, oh yeah, 10th grade and beyond. I'm sure he will do it on his own then. Or maybe have a girlfriend, who really cares about grades and wants to help him study. This is a true possibility, right?  A girlfriend and a girlfriend who like to study.

I meant to take an actual picture, but didn't

Next eye-opening event - diabetic retinopathy exam.
Riley needed to have an eye exam because his frames had broken  for the 13th time and it was time to get bigger ones anyway. Since it was less than a year since his last eye exam, I was told the eye doctor would code this exam as a diabetic check-up and it would be paid by our insurance. It was old hat. We've done this a few times now and I had nothing to worry about until I saw the the doctor purse her eyebrows as she was looking through the equipment pictured on the left. She did it for both eyes. I suddenly felt sick. My stomach turned. In my head, I was screaming, "Wait this is just routine stuff...nothing's wrong here!" Then she finished, everything looks great. Very normal.

Indoor soccer at 9 pm. Very exciting. I'm excited for Riley to have the opportunity to become a better player. Improve his game for the fall season at school. Diabetically speaking, it's very strange. This was the second week of games on Saturday night, last week was at 8:30 pm. We knew what to do. Riley tested before we left the house to see if his bg was below 150 in which case he would eat a snack. It was 233. Perfect number to start a soccer game, I guess. The players each play about 5-7 minutes then come out and sit awhile, then head back in. I would think that the excitement of the game and the total minutes of play time would drop his blood sugar by at least 50, right? When he got home and tested, it was 280. What?!? Now what do we do? Correct and then have it plummet overnight when his body realizes the exercise/excitment or not correct at all?  We just dosed for Lantus (night time insulin). This morning his bg was 113.  That is definitely comment-worthy. I let his bg remain that high with only Lantus to correct which works over a 20 - 24 hour period.

What I Am Reading and Why

I don't know why.

I tried to backtrack and can't figure it out. I was reading...Oh wait, I recall now. I was watching an interview with a mother who put her seven year old daughter on a diet. Dara-Lynn Weiss is the author and the book is The Heavy. The interview was brief and trite. So I googled it and while I was reading an article about Weiss, The Battle Hymn of the Tiger Mother was mentioned. I was intrigued. I also had a faint memory (clearly an issue of mine) of my cousin mentioning the book or someone mentioning it on a blog. I checked it out...Correct on both accounts, here's the link to my cousin's blog.

I read until about midnight last night and again today while waiting in the car for my next interpreting assignment. It's fascinating. It makes me feel so stupid. Literally obtuse, well not literally. The only thing I do that is in any way similar to Amy Chua is yell at my kids. So it isn't even one of the things that is tough now but pays off later like hours of instrument practice. I'm not saying that I agree with the the Chinese model of raising kids but it has more positive aspects than the Western model. There must be a way to get the best of both worlds.

I still have half a book to read. Maybe Amy figures it out.

I tried to get the previously mentioned book, The Heavy, at the library at the same time, but couldn't recall the title or full name of the author. When I drop off Tiger Mother, I'll pick up The Heavy and let you know how it goes.

*theme today = I can't remember crap

30 Day Media Fast

Not fast as in fast forward, but fast as in to do without.

Our youth group is doing their annual overnighter tonight. I am not there because I seem to have caught a bug. Not the flu that is running rampant all over the United States right now, but a little sore throat, head congestion and a touch of a sick stomach.

The night will include a worship band from a nearby college, laser tag for three hours in the middle of the night, root beer floats and a showing of the documentary Captivated. I just watched it and it is powerful. I am looking forward to Tim and Riley getting home in the morning and see if we're all on the same page. Or at least that Tim and I are on the same page - the page is that we as parents need to take control of the television (we don't watch much tv, but unplugging will show us how addicted we may be), xbox, iphones, and Kindle. There is definitely some addiction issues to the middle two.



me watching the documentary and the whole house went dark

A strange thing happened while I was watching this documentary about unplugging from media. Our power went out. So the only electricity running in the whole house was this laptop with Captivated showing. Tim's work computer and phone - out. Riley and his friend's Xbox game - gone. Reid's television - blank. That's a pretty strong message. And I got it loud and clear.

On a completely different media note - I can't upload pictures here anymore. Is anyone else having the same problem?

Picking Favorites


Thursday - my favorite day

  7:15 am   bg 135   eat breakfast, inject insulin, go to school
10:30 am   no idea  call home because feels sick (nausea etc...whatever it takes to get out of school)
11:00 am   still ?     call home again because we haven't come to pick him up
11:30 am   bg 81     on the way home with his parents who finally picked him up
11:40 am                 feels dropping, eats 15 CHO of grapes then hungry eats 30 CHO crackers/cheese
12:00 pm   bg 87     watches UFO stories on cable wrapped in Gramma's down comforter
  6:00 pm   bg105    what what?? perfect 
  9:20 pm   bg 120   you're killin me



Reuben is his favorite

Friday - Riley's report about his day: great day; smiled and laughed all day.

Wait, whoa...what about being ticked off at the world, failing a Spanish quiz, forgetting your math homework, annoyed by all my questions, wishing you had cooler parents?

Making sense of it all - hormone drop? Could it be that the hormones wreaking havoc on his insulin resistance and his attitude have taken a vacation?

New Year - New Diabetes??

Screw Diabetes.

That's a direct quote from me after yelling at Riley that he needs to learn the lesson of insulin dosing before he eats! We just ate dinner celebrating my father-in-law's 71st birthday. Riley had his own pizza and Caesar salad. Before dinner he tested, bg was 293. *Important background information: For lunch he had a pretzel from a kiosk at the mall and a bottle of water. Then we divided and conquered Christmas returns and birthday gift shopping. Riley went with his dad and Reid with me. I assumed he tested and dosed. I was wrong. He did neither. When we got home from the mall at 4 pm, bg was 351. He corrected with 5 units of insulin (1:50).

Back to the story: I told Riley not to correct for the 193 he was over his goal because we already made that correction an hour and a half ago. Just dose for the pizza was the plan. Riley was sitting at the other end of the table with his Grumps (birthday boy) and Aunt and Uncle. When we were walking out, Tim asked me if Riley dosed. I thought..."that's a weird question, I was sitting across from you, four people and a diagonal line across from Riley, how would I know and of course he did". That's a lot of thinking without saying a word in reply.

Then we're driving away to go eat more carbs to celebrate the birthday. Tim asks Riley if he did his insulin. The reply? no

I freaked out. Something along the lines of ..."Your number before dinner was high, like 293, and then you proceeded to eat a carb heavy meal of pizza? Have you lost your mind? How could you not have dosed? You are going to test right this minute and see what your number is. That will teach you a lesson".

Bg? 223

How could 5 units of insulin at 4 pm with a bg of 351 bring his sugar down to 223 with pizza added to the mix over an hour before? Oh yes I thought of that, too. Pizza has a delayed rise...But no way. Who got taught a lesson here?