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.