I Wasn’t Talking To You

Having multiple kids with diabetes can be a real challenge. <<<< Biggest understatement ever.

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Ok in fairness this might have been the biggest understatement ever. Apollo 13. Totally unrelated to the post but most certainly an understatement.

 

Someone is always high or low or out of insulin or needs a site change or can’t find their meter or forgot to dose for a snack or has a low battery in a diabetes related device. There. Is. Always. Something.

I’m ashamed to admit that there are times I am a bit envious of my friends who have only one child with diabetes. That only lasts a nanosecond before I give thanks that multiples is not the norm.

My kids think I nag too much. The thing is, I bet on average I only ask each kid what his/her blood sugar is maybe 2 times a day and I might ask/remind each kid to bolus 1-2 times a day. That’s it. Many of my friends who have 1 child with diabetes ask/remind two to three times what I do. (Some even have the Nightscout system and have blood sugars sent to them 24/7 – totally not what I am going to talk about on this post – not sure I ever will share my thoughts regarding Nightscout other than we do not Nightscout.) I do have requirements that I expect to be met – a minimum of 3 checks during school hours and checks before eating. I let my kids do their thing and occasionally scroll through a meter to see that they are. If they are not we have a discussion. But back to how often I ask each kid about numbers and bolusing – not often.

HOWEVER – my kids hear a repeating record when they are home. What was your number? Did you check? Don’t forget to bolus. Etc. Only all the times I say it are not directed at one child alone it is distributed between 3 kids. The problem with this is regardless of whom I am badgering they all hear it – repeatedly – over and over and over again. It’s worse when I ask all three what their numbers were within the same few minutes and thus forget what each told me and ask again – ok that is my fault. Totally my bad.

Most kids with diabetes that don’t have siblings with diabetes get a break from the constant barrage of questions and reminders and nagging (all of which is done with love btw). My kids don’t often get that break because there is nearly always some diabetes dialog happening somewhere within earshot.

That must seriously suck for them.

It feels like this:

(gosh I hope you didn’t listen to the entire 10 minutes)

I totally need to work out some kind of system so there is a break in D talk.

Meri of Our Diabetic Life has a white board. Meri was recently quoted regarding one of her reasons behind her white board on the new Disney T1 Everyday Magic site “With three boys diagnosed with diabetes, I find it’s hard to keep track of blood sugar trends. To remedy this, I’ve hung a whiteboard in the hallway. We write all the nighttime numbers on the board for several days and then analyze the numbers on the weekend. Writing the number down helps us take ownership of the number. And erasing it when we’re done is completely therapeutic!”  If you are a parent of a child with diabetes and you haven’t already checked out the Disney T1 Everyday Magic site maybe bookmark it and when you are done thoroughly reading my posts and leaving meaningful thought-provoking comments you should check it out.

Anyway – I envy Meri’s white board. I suggested a white board and my kids nearly staged a coup. They didn’t especially like the idea of having to see the numbers all the time. I get that. Oh and when I say ‘they’ I mean my oldest didn’t want to see the numbers all the time. She has been struggling with some stuff of late and I think she doesn’t want an “ugly” number written down where she would have to see it. Although I think some of the pushback from the kids was due to me suggesting ‘they‘ write their numbers down which requires them to do an additional task. But oh how I would love a white board. My mistake was in asking them what they thought. Sometimes I think we (parents) just need to make decisions and tell our kids what the new procedure will be. I don’t typically go that route since my kids need to own their diabetes but sometime I daydream about how nice it would be to just look at a whiteboard rather than ask questions.

I

I was playing with shadows.

 

Ok I’m done venting now. It’s bedtime. I have to go ask for numbers. Sigh.

 

 

I’m just here for the gloves.

It is 2015 and just so there is no confusion later this really is the year Marty came to in the future.

maxresdefaultAlthough that has absolutely nothing to do with this post. Honestly it has nothing to do with anything but somehow that picture has shown up on my Facebook feed a half-dozen times since Jan 1st. Granted similar photos showed up in the past only claiming that 2012, 2013, and 2014 were all the years Marty went to. Why is this so important to people? Anyway – be sure to post on your Facebook feed how everything you post is covered under copyright law – I hear that is important. Do it while sipping okra infused cinnamon water and your personal photos will be protected while you cure diabetes.

Moving on –

My kids all have had Endo appointments in the last 1.5 weeks.

I took the boys separately but together, meaning I took them together but separate from my daughter.

I took all three kids to the appointment before this one and honestly I am surprised we all made it out alive and free of any criminal charges. Seriously – my advice (free of charge) to any parent with multiple kids with diabetes or just multiple kids in general. Schedule separate appointments if you can. Doctors visits are stressful with just one kid. The stress for all parties increases exponentially with each additional patient.

Ok so the boys had their appointments back on December 29th.

It was time for blood work too.

IMG_5282 IMG_5283Those finger puppets were in the sticker basket. I was about to try to distract the boys from the poke of the blood draw needle but honest to goodness the blood whisperer (the man whose head you see) had poked each boy and drawn their blood in less than 2 minutes flat each. Neither boy felt the needle or knew what the heck happened before the blood whisperer dismissed them. *I did not name this saint of a man the blood whisperer. I was informed who he was after posting the picture of Sugarboy on my FB page wherein another Dmom saw it and told me about the blood whisperer. He is well-known in our community as being the best phlebotomist within 100 miles of Seattle.

As far as the actual appointments went – the boys A1Cs both came down a fraction. I don’t typically share A1Cs for two reasons: 1) Diabetes is not a competition 2) It is an average. I could say my boy had an A1C of 5.5 and all that might mean is he spikes extremely high and then plummets to the lowest of lows – and voila a very pretty A1C. *my boy is not 5.5 – I was simply using that as an example.

Sadly the appointment did come a good week into the holiday break which meant the weeks numbers prior to the visit were useless. Eating at random times, continuous snacking, lots of high carb treats, missed boluses, sleeping in, staying up till the witching hours and hours and hours of sitting in front of a game system. (yup – my kids spent quite a few hours playing video games and I’m not ashamed to admit it. Ok I am a bit ashamed – we could have, should have spent more time out doing something together, but they don’t get a ton of screen time during the week and this was their break and by golly it was mine too. I’m fairly certain a weeks – fine two weeks – of video games will not have ruined them for life.)

Anyway I asked the endo to ignore the pump/meter downloads from Dec 20th on. Instead we focused on the first weeks of December. In general the boys are doing well. Each is checking blood sugars 7-10 times a day and bolusing at least 4-5 times a day thus covering meals and snacks. Middles had quite a few boluses without blood sugars and spent many afternoons/every evenings above target. The doctor discussed how grazing or frequent snacking and bolusing without blood sugars is often the reason for the later afternoon/early evening highs. Post hoc ergo propter hoc. Middles agreed to cut down on random milk consumption and snacking and improve his bolusing with blood sugars.

Sugarboy didn’t have much to discuss. The doctor noted his post lunch lows and it was determined that he boluses before eating but often runs out of time before finishing his lunch. It was decided he would bolus for half his lunch prior to eating and then the remainder of his carbs after he is done. This is how he had been bolusing for lunch since kindergarten. This was the 1st year he had switched to a straight up pre-bolus.

It was a painless visit for all of us despite blood draws – seriously every endo office needs a blood whisperer.

You still with me? – How boring is this post right? I feel like some comic relief or intermission is in order. I read this  in a comment on tumbler and I am dying to try it.

Next time you are in a public rest room and you are washing your hands and a stranger comes up to wash their hands, cup your hands under the water to allow it to pool. Allow it to run over your hands. Then with a stone serious face say to the stranger “this water is getting out of hand.”

Did you get a good laugh? Maybe stretch your leg? Good.

Sweetstuff’s visit was tonight. (which was now last night because it is ow Tuesday morning)

She hates hates hates the endo. Not any particular endo – all endocrinologists. They tell her what she is doing wrong. They nit-pick, they tell her what she has to do or should be doing. There is nothing my daughter hates more than someone telling her what she should be doing or needs to be doing. Well, she hates the sound of someone chewing. She also hates the sound of the dogs lapping up water, and her cat cleaning herself, and she isn’t particularly fond of loud breathers. But her real hatred falls on endos.

Her appointment was at 5pm. I made dinner early and fed all the kids. She and I left at 4pm to get into the city. When we arrived I asked her if she wanted Starbucks and in the same breath told her she would be getting blood work done. While she was saying something like “yes, wait, what the heck?!$&?#!” I asked her again’ so how about Starbucks?’. We checked in and then went to the blood draw window. I told the receptionist I needed the blood whisperer (only I used his actual name). My daughter gave me the most annoyed yet somewhat intrigued look. We found a comfy spot to sit and soon she was called back for her blood draw. I told her she wouldn’t feel a thing and it wouldn’t take but 2 minutes. She gave me an exasperated look and declared to the blood whisperer that she was a hard stick due to spider veins. Where does she get this stuff? Three minutes later she came out looking both in shock and in awe. She admitted it was crazy how quickly and painlessly the whisperer did his job.

Moments later we were called back for measurements and vitals. She got on the scale and then checked her height. At this point I declared “You’ve been weighed. You’ve been measured and you’ve been found wanting.” She rolled her eyes. I was cracking up. It isn’t often I can quote a favorite movie in the literal sense. She was not impressed. Well she didn’t let on that she was impressed but I saw the corner of her mouth curl up just a smidgen while she shook her head with disapproval for my shenanigans.

When the nurse came in to ask for Sweetstuff’s pump I inquired if they had yet received the software to download a TSlim. They had not. They (the hospital group) have not endorsed the Tandem pump just yet. No doctor in the group has prescribed one (although I think our doctor would like to). I had anticipated that and I had printed out a months worth of pump data and meter data.

When the doctor came in with A1C results and to discuss the pump data with me I motioned her (the endo) towards my daughter. I said “she needs to discuss it with you, I’m just here for the gloves” waving a couple of rubber gloves in the air. Seriously the kids and I totally play with the gloves while we are there and I always leave with a few in my pockets – you never know when you might need a non-latex glove.

Sweetstuff’s A1C also went down. Not exactly where we want it but not anywhere that would suggest she isn’t doing most of what she needs to do. Her data shows 5-8 checks a day and 4-6 boluses a day. While she has had a number of extreme highs they could be explained by missed boluses, bad infusion sites or the occasional dead pump battery or pump out of insulin. She is a teen and while I don’t like to admit it to her often – she is doing a very good job most of the time and her occasional blunders are nothing out of the ordinary for a teen her age with diabetes.

The endo pointed out a half-dozen ways she (my daughter) was doing wonderful and made only a few suggestions of things that might improve some of the not great numbers. The endo complimented her on the number of blood sugars taken and her lower A1C. The endo never criticized, told her she was screwing up, or even told her she could do better. It was the perfect visit.

My daughter left feeling empowered and successful. IMHO – there is no better way to help a teen with diabetes do better than to allow them to feel pride and independence.

Woohoo! 3 Endocrinologist visits done and no school was missed. All the kids doing well. Plus I scored a few gloves.

My bit of advice – again free of charge:

  • Don’t fret over numbers the few days before endo visits – those numbers right before will not have an effect or large effect on your kiddos A1C overall. That goes for my adult friends with diabetes too – so many of you fret over bad numbers right before the endo. Stop that.
  • As much as possible have the endo talk to your child, even the littles ones. Empowering the kids makes a humongous difference in how they view their diabetes – do they view it as theirs or yours? Let them own their success or their short comings.
  • An A1C is not a report card. It is a progress report and can help you/your kiddos see what needs to be done to change things. Still it is an average – the numbers could be 400, 36, 390, 54, 512, 59, 464, 61, 63, 42, 119, 84, 72, 123, 111 averaged = 172 which would be roughly an A1C of 7.5 which is what the ADA recommends for kids. In no way are the imaginary numbers I listed above healthy. Again an A1C is an average of the amount of sugar in a person’s blood over a 2-3 month period. I was once told by an endo that just 2 missed boluses (resulting in a substantial highs) can increase an A1C by as much as 0.5. Imagine how many missed boluses a teen has in a 2-3 month period. Those 2+ missed boluses are not the only indication of how well the teen is managing his/her diabetes. 
  • Download pumps and meters at home between endo visits. I don’t do this and I should. Those pie charts, bar graphs and line graphs provide a wealth of information. I have no problem changing my kids basal rates, carb ratios, and correction factors. Why do I avoid pump downloads? Imagine how much more informed I would be if I looked at the data each month and taught the kids how to review the data. The data from Middles pump showed clearly that he was bolusing without blood sugars. I had no idea and it had been a chronic issue with him since school began. Knowledge is most certainly power.
  • Don’t forget your gloves. They are basically party favors from the endo.

I know this was long, but seeing as I haven’t posted in a couple of months I was making up for it.

Happy New Year all.

May 2015 find you happy and healthy, surrounded by love and laughter and full of moments that turn to memories.

Cheers.