Catch Up

I still have things I want to talk (blog) about....What I Want People To Know About Diabetes /Day 5 and Saturday Snapshots /Day 6. Forgive me that I didn't keep up with the fantastic Diabetes Blog Week, I lost steam on Friday, right when I was getting good at this (in my own mind-that's all that really counts, right?)

I want to tell you every strange conversation I have had with people who talk to me about Riley's diabetes. From the death of fill-in-the-blank to the "easy kind of diabetes". But I don't have to because of Death of a Pancreas  where I found this HYSTERICAL video that contains every one of 'em. 

Maybe I could post it here instead of doing the linky thing above.

Oooh, I did it!

Snapshots of what T1D looks like at our house:

First bg check at soccer practice
Riley is under this group of onlooker team mates

This pack on his back is the "kit" as in "do you have your kit?"

random lancet

bg check at Massanutten water park

Diabetes Blog Week - Day Four "Fantasy Diabetes Device"

This is what our CDE, Pam stormed into the room with when she saw Riley & his iphone sitting on the exam table today.  This was very appealing to a 13 1/2 year old! Especially if he's the first guy on the block to have one. I'm gonna run right out and get him one...right after he uses the forty boxes of One Touch Ultra 2 or whatever test strips go with his bg meter.

So I was gonna skip out on today's "Fantasy Diabetes Device" topic. We're so new to this. We're just happy Riley's alive. The only change he has had in his diabetes care in these 8 months is when he was able to switch to the Lantus pen instead of Lantus vial/syringes. That was a huge change, it was about twenty days after he was diagnosed and he counted every night down until he could switch to the pen like his Novolog.

Then we got introduced to this very cool little $75.00 attachment to the iphone. Apparently, it's not even on the formulary yet and calls need to be made to insurance, to Sanofi and to the Endocrinologist's office, too. This all sounds so exciting!

I'm happy we found some cool device before we got to wishing for one. I'm not a dreamer, it would have taken me a long time to come up with something. I just don't know enough, YET!

The 3-month appointment went well.  Riley's still in the honeymoon phase, although he's had a few very high highs the past couple before dinner checks. We'll wait and see how it goes. They said he will have high morning numbers when the honeymoon comes to an end. So I'll plan on only getting anxious at that time.

Diabetes Blog Week - Day 3 "One Thing to Improve"

I was feeling all smug...I just don't have anything we (the boy with T1D and his mother) could do better. As already mentioned, he wears his alert bracelet most of the time, he checks his bg before each meal and bed time (MDI), he is doing his own injections. We go to the Endocrinologist every 3 months and meet with the diabetes nutrition lady, too. Riley is still in the honeymoon phase, so things aren't too hard to manage.

Until dinner time last night. Bg was 326. I was sure this was a he's been playing in the sugar sand box again or fell head first into a bakery supply store. I made him wash his hands (I've heard about this from blogs) and re-test. 318. We sucked it up and he injected 2 units of additional insulin which should have been 3 units and ate dinner and enjoyed the rest of the evening.

Then it was 10 pm and he tested before bed. Bg was 243. WHAT IN THE WORLD?! He panicked a little thinking as we always do at a high bg reading that this was it, the end of a partially functioning pancreas. First, we always say, what did you eat? Then we think, maybe this is the end of the honeymoon.

I told him not to worry, we (his parents) aren't worried. There are hundreds of reasons why a number would be high, growth hormones was the only one that I mentioned because it was the only one I could think of...He said, "You guys don't understand, you don't get it the way I do." I appreciated that he thought he could out-worry me because it was HIS diabetes. I liked that. BUT let's get serious, I will always worry more than he will and never in front of his face. I wanted him to know that the people whose job it is to worry in this house, are not worried at this blood glucose reading. Listen up son-of-a-worrier, DO NOT WORRY about it. I think this talk helped. Although, he couldn't sleep until way past 11 and ended up sleeping on our bedroom floor, so maybe not.

He knows as well as we do that the day is coming. All the wishful thinking will not make it go away. The honeymoon has to end.

The One Thing to Improve today is dealing well when that day comes. We're no longer living waiting for the other shoe to drop like we were when he first was diagnosed. We've lulled ourselves into thinking he'll be one of the few who have a little pancreas function like the sweet man I met at a JDRF envelop stuffing event (see March 17, 2012 post-I would link it here for you, but I don't know how). I do believe in a God who heals mind you. But I'm not sure if this is where the miracle will happen.

Diabetes Blog Week - Day Two "One Great Thing"

Riley goes to a small private school that doesn't have a full time nurse. They have a part time nurse's aid. The district nurse comes in on Thursdays. I didn't know any of this before Wednesday, September 21, 2011. And my kids have gone to this school for 9 years.

The school nurse called me on Thursday morning, two days after Riley was diagnosed and had the two of us come into the health office to do a practice run of how it would go on Friday when Riley was back in school. I hadn't even given him an injection yet. My spouse did them at the Diabetes Clinic/Endo's office while we were there in training all day the day before. That nurse did the pre lunch injection that day (Riley preferred a certified medical person that he had never met over his rookie mom) then she suggested I get practicing. I've done almost every injection in that health room since Friday, September 23.

Riley goes in, tests his bg and I do the injection and write the date, bg number and insulin units given on the clipboard. Until April 2. That was the day Riley got furious about some school work he was missing or forgot to do and had to take care of at the last minute. I have no idea why he was so mad, this happens regularly. But, he went upstairs and did his nighttime bg check and Lantus injection by himself. He's been doing it ever since.

Our CDE had told us that by the time we came to the next 3 month appointment which is this Thursday she wanted Riley wearing his Type 1 diabetes stretchy bracelet thing and him to be doing his own injections at school. I told her that was too much. He would certainly wear his stretchy bracelet thing after I ordered the coolest one we could find, but I would still be going to school everyday and monitoring his insulin injections...do you hear what I am saying, there is no one in that health office to make sure everything is ok? Do you realize he has only been Type 1 for a few months? What's the hurry, he will be doing his own injections for the rest of his life? Have you ever done this before? I believe tears were dripping down my face at this point. I believe this because she handed me a box of tissues.

And here we are three months later and this boy who couldn't even look at the needle when we would draw it up in the glass vial, has his diabetes care under his control. Not my control, but his control. That is one Great thing.

I still wish I could give myself the injections for him. Sort of like we were still connected by the umbilical cord. I wish my pancreas could function for both of us. But I am so proud of him.

Diabetes Blog Week - Day One "Find A Friend"

I have been reading blogs regularly since my son, Riley was diagnosed (8 months ago). I found immediate comfort in finding a great blog then reading all the blogs that that original blogger reads. It all started for me at  Sara's http://momentsofwonderful.com/.

Then I stumbled upon Kerri Sparling's http://www.sixuntilme.com/. I didn't realize that she was some whiz-bang-long-time-maybe-original-diabetes-blogger-professional. It was her Diabetes Dictionary that I found in a google search looking up words diabetes bloggers always use like SWAG and bolus (we're MDI'ers). It had me laughing out loud and reading the entire dictionary to my husband who was trying to work. I just re-read it and still find it hilariously funny see: diabadass, daibetus and diablandic. Now I never miss her blogs thanks to RSS feed or whatever technical thing that sends me her updates as soon as they arrive.

And that all lead me to my ALL TIME FAVORITE, can't stop talking like she blogs, read it in the middle of the night in case I missed it during daylight hours http://bigfootchildhavediabetes.com/. Everyone needs some Katy in their life!

These blogs made a difference in my life. The more I read other people's blogs, I see the same impact they've made on me in other's lives. Specifically, I see hope and find courage. My perspective is so limited, I only know what we were taught in Diabetes Education classes and how it went for Riley's bg numbers last week or that time in October...I'm so grateful for the blogosphere lessons I'm learning and the experience I'm gaining through someone else I have never met.

It would be embarrasing if I saw any of these women in real life...I may be arrested as a too-long-hugger or something creepy like that.

Undefeated and Defeated

Spring soccer will not defeat me!


He hates it when his hair looks like that
-I couldn't resist

It started with me laying in bed this morning. It always starts that way. "Riley don't take any insulin with your breakfast," I say. He says, "Dad told me to do just one unit." (half of his normal dosage) "No, none" I reply.

8:15 am before the game 86 mg/dL
He played the entire first game, 90 minutes. And scored a goal. His team actually won this game, first and only win of the 6 week season.

10 am just before the second game grudgingly tested  253 mg/dL
I turned to my spouse and said something like woo that's high BUT that number is a dropping as we speak.

11:30 am - tested before eating lunch  149 mg/dL 
The second 90 minute game dropped his blood glucose by more than 100. He had a salad and two large slices of pizza with one unit of insulin.  BTW, his team lost that game in similar fashion to every other Saturday morning these past six weeks, except Riley had another goal.

1 pm - heading to the shower, laughing and yelling and possibly dancing around ridiculously. Spouse and I looked at each other and then I ran down to get his kit. Riley said NOOOOOO! and jumped in the shower. I set up the lancet poker thingy (and while cleaning out the kit, poked my finger with a stray lancet, but can't complain right...once every 4 months I injure myself with a lancet or sharp somehow, not eight times a day minimum like he has to)
When he got out of the shower  68 mg/dL 

Diabetes Blog Week

May 14 -20 is Diabetes Blog Week
Join in the fun this week. Come on, everybody's doin it!

Karen at Bitter Sweet is hosting her 3rd Annual D-Blog Week. Everyone participating will blog each day about a set diabetes related topic. Everyday for a week (thus the title). Her blog shows the list of everyone in the DOC - Diabetes Online Community who is signed up to participate. So readers can gain all kinds of insight and great stories from a whole slew of people blogging their experiences having diabetes or caring for a child with diabetes, etc...