Marble Slab

As I may have mentioned many times before, we go to RedBrick Pizza every week or two for their delicious gluten free pizza.

A few doors down from them is a Marble Slab Creamery.  A couple months ago I gave in and we stopped there for some dessert.  I explained C’s celiac disease.  I asked to see their ice cream ingredients, I asked them to use a clean scooper and I asked them not to mix C’s ice cream on the slab, just to put the toppings on top.  Like toppings.  They gave him an extra big bowl so he’d have room to mix his own gummy bears or sprinkles or whatever it was he had.

Since then, we’ve gone a few times.  Maybe 5 or 6?  It not always the same person working, I think we’ve come across two or three people.  The last time we went in something magical happened.   As I was about to order I noticed her walk over and grab a clean scoop, I didn’t think much of it.  Just thought it was time to grab a new one.  I ordered “one scoop bubble gum ice cream with gummy bears…”

She cut me off.  “Not on the slab, right?”

She remembered us!  Can you believe that?  It was so rad realizing that the more we go out, the safer C gets.  The more people we inform of his needs, the more people will help him.


How Low?

I just went in to test C before he goes to sleep.  I say, “110.  Awesome number, but a little lower than I want it for bedtime.  Is there anything special you’d like?”
He answers, “I’d like a Vegas-Style Buffet.”

Ok, back to what I was trying to write before…

We’ve been singing the song How Low by Ludacris around here a lot lately.  Cuz it’s been pretty fitting of C’s numbers…  And really, I get a total kick out of hearing him start singing the chorus and knowing that he’s low.  I love that kid’s great attitude.
Anyway, today was definitely a juice & glucose tabs kind of day.

C’s class was going on a field trip.  To the high school.  Seemed low key.  I asked the teacher if she needed parents because I felt like maybe he could go without me (it was realllly hard to take off work today).  She said she did.  Ok, no problem.
I met the kids at the school at 11:00 am.  They came walking out to the buses and C told me he hadn’t gotten to eat his lunch.  His teacher quickly told me that they were supposed to eat an early lunch, but then the buses came and they didn’t have time to finish so he was taking his lunch with him.  I asked if he’d already given himself insulin and he had.  I told him just to eat it on the bus.  He informed me that there’s no eating on the bus.  This annoyed me so I pulled him out of line and we went to sit on a bench and eat.  Ugh.  Getting grouchy.
Anyway, I asked when he took insulin and he told me it had been about 20 minutes earlier.  He’d had a juice box, but felt low.  I asked what his number had been before he gave insulin.  80.  80? And then give insulin and make the kid wait 20 minutes?!?!?!?  He then told me that he had been really scared until I got there.
This is the situation that I hate.  The situation where the people who are supposed be keeping my son safe don’t understand the consequences.  He was sent to the health office to test and take his insulin.  By the time he walked back to his class to eat, the kids were finishing and lining up to get ready to go to the bus.  I know his teacher’s busy and wouldn’t have had time or understanding to see the number and play out the next situation in her head.  But really, the next situation could’ve been really ugly.  I told her that he was low and that I’d be driving him instead of taking the bus.
On the way there, I explained to him that even adults and teachers usually are not going to know more than him about diabetes.  When he’s in that sort of situation and he knows it’s wrong or is scared, he MUST explain to his teacher what could happen to him.  I assured him that she wants to help and wants to keep him safe, but doesn’t know what his blood sugar should be and what can happen to it.  She understands that he needs to eat after his insulin, but obviously doesn’t understand that he needs to eat on insulin’s schedule, not the school’s.  She doesn’t understand that a number on the verge of a low definitely needs to eat after taking more insulin.
I hate diabetes.  I hate that it puts my son in a helpless position.  I hate that not enough people understand it.
But I love my son.  I love how smart he is and how accepting he is of his lifestyle.  I love that he’s confident and comfortable telling and teaching others about diabetes and celiac disease.  But right now, I’ve got to go teach his teachers something new.  Teach them to listen to him and remember to ask him if he can wait until they get to the field trip, not tell him.
Anyway, now that I’ve got that off my chest, the kid was low 3 other times today.  After all the juices and glucose tabs he was up to around 270 in the afternoon when my mom picked him up.  She didn’t correct him.  He came home, jumped on the trampoline with his brother for a while and tested for dinner and was 106.  Crazy.  Here’s my thoughts though.  Whenever we pull out an infusion set, it’s kinked at the end.  Like a straw that got bent over or something.  The first time we tried it in his booty, it came out straight.  So I’m thinking it might be because he has minimal meat on his body.  He’s skin, muscle and bone.  Little tiny bit of meat on the backside.  But, numbers are usually pretty good and corrections usually work great, so I’m not comlaining.  Last week, he had 3-4 days of rottenly high numbers.  Changed infusion set back to the booty and they were great again.  Cannula came out straight.  The last 3 days his numbers have been almost perfect.  Not really.  They’re just not high.  He’s low every single day.  Only like once though except for today.  Tonight I pulled out the infusion set… STRAIGHT.  Even though it was in his belly.  So, I’m thinking now that we’re getting a few that aren’t getting kinked, maybe he’s getting too much insulin.  There is seriously a LOT of thinking that goes along with this disease.

reteaching the teachers

I’ve probably written it before, maybe even yesterday.  If not, everyone around me’s sure heard about it.  My son is alone with his diabetes at school.  He’s cool with it, but I get infuriated everytime a situation comes up.  He goes to the health office at lunch to test, count, bolus.  Then he’s on his way.  I met him there every day of this school year until a few weeks ago.  One MDI (Multiple Daily Injections) nobody seemed very interested in finding out what I wanted them to do.  So I kept coming.  Finally I saw starting the pump as an opportunity to start over fresh with the school, teach them what needed to be done and back away and let them do their job.
Yesterday while going over his numbers in the meter he finally remembered to bring home from school I realized that there were 3 days in the last 2 weeks where there was no number at lunch.  He just plain didn’t test.  He bolused, but didn’t test first.  He’s told me that the health tech never goes over his carbs with him to make sure he counted right and then he’s headed back out to his friends.
C’s Dr. was pretty upset to hear about this yesterday.  She wrote up a “prescription” for what they need to be doing and wants me to have it added to our 504 right away.  She reminded me that I’m not asking them to go beyond the call of duty.  I’m asking them to do their job and pay attention to my son’s health needs.
Today, I went to the school just before lunch and told the health tech that I really couldn’t be leaving work everyday anymore, but I need her to understand what needs to be done.  Then, when C came in I told him what she needs to do and had him show her every little thing he does.  He can’t just rush out to the playground.  He needs to show her every single number that comes up or that he enters.  Let’s hope they start working together as a team.

Oh!  almost forgot.  Another great thing.  the last 4 nights C’s blood sugar’s been 300+.  One night it was up to 415.  I changed his infusion site in the middle and still no break.  During the days, it was mostly pretty good, but evenings?  forget it.  Last night, bribed him once again to move the site to his booty, and bam!  he woke up 147 even though he went to bed around 260.  Corrected and at lunch he was 116.  At dinner he was 85.  Thank goodness for his booty which is probably the only place on his body that has any tiny amount of meat on it!  I sure hope he’ll go for it again next time.  My first bribe to try was $10.  This second one was a $7.99 game on his phone.  At least the price is going down.  I’m thinking the next one’s worth $5, then maybe he’ll forget all about it after that.  🙂