Swing Life Away

On September 16, 2014 Angelina experienced her first ever concert.  On a school night, no less.  During one of the opening bands she and I decided to hang out in the lobby because I am getting old and the band was just NOISE.  The music was actually okay but the “singer” just screamed random things into the microphone that were unintelligible and ouch, my ears.  Angelina felt the same way, so maybe it isn’t just old(er) age, lol.

As we were sitting out in the lobby a couple came and sat near us and we struck up a conversation.  Apparently the woman was a kindergarten teacher and told Angelina that she had the most awesome mom ever for bringing her to a Rise Against concert on a Tuesday.  It didn’t feel so awesome when I had to try to get her up for school at 7:30 the next morning after we didn’t get home until almost 1am.  Fortunately *cough* her site decided that it wanted to pull out at about the time she finally rolled out of bed and we had to do a site change which gave an “excuse” for being late, aside from “we were out late and she didn’t want to wake up this morning”, which would not be an excused absence.  I only feel slightly guilty for finding some diabetes related thing to make an excuse for tardiness.  But, at least it gave an honest excuse, right?  I know, I’m  a terrible mother.  First I let my kid stay out till all hours at punk rock concert then let her be late for school the next morning because instead of just sticking a new site in, I actually did our normal EMLA cream routine that takes at least an extra 30-45 minutes, instead of telling her to suck it up because we don’t have time for EMLA cream.  Of course, it had more to do with the fact that she had to get dressed and all of that so she might as well have a painless site since she was going to need the extra time anyway.

 

Also, Rise Against was awesome.  This is what her diabetes thought of the concert:

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Last song- crashing!

Last song- crashing!

And, not diabetes related, but concert photos, cuz, yeah!

Ironically closed Hollywood Video in Hollywood, CA

Ironically closed Hollywood Video next to the venue in Hollywood, CA

 

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#DBW 1 – Change the World

Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you. (Thanks go out to Kim of Texting my Pancreas for inspiring this topic.)    From: http://www.bittersweetdiabetes.com/p/2014-diabetes-blog-week-topics-posts.html

 

While I’m not out to change the entire world, I do try to change at least our small part of it.  So, what am I passionate about when it comes to diabetes?  Can you guess?  I can’t pick just one topic.  Support.  Education. School issues.  Those are probably the ones that I participate or talk about the most.  The ones I am most passionate about.

I don’t see “support” and automatically think about it being advocacy though.  I think of it as a lifeline for anyone who is dealing with diabetes in any way – whether it is a person with diabetes, parent of someone with diabetes, friends, family, co-workers.  There is no limit to who can benefit from support when it comes to having diabetes touch your life.  I honestly wouldn’t be where I am right now in Angelina’s journey if it weren’t for the DOC and the 24/7 support and connection with so many other people who are walking a parallel road.  Which brings me to the next cause:

EDUCATION.  Diabetes education is probably the thing I am most vocal about, simply because I feel like there’s not enough awareness out there about Type 1.  And it seems that even the people who try to raise awareness for Type 1 do it at the expense of Type 2.  By saying “well, that statement that you made about food doesn’t apply to T1.  My T1 child didn’t do this to themselves.”  While the statement is true, it implies that people with T2 “did it to themselves”, which is not always the case.  I don’t agree with raising awareness and education for one condition while making ignorant statements or putting down people with another, similar condition.  Yes, Type 1 and Type 2 are different.  Yes, Type 2 does have risk factors that include lifestyle choices… but, it also has a strongly genetic component.  And regardless of any of that, diabetes, in any form, SUCKS!  No one asks to have diabetes.  So placing blame doesn’t benefit either cause. If I am going to teach someone about something and part of that education is differentiation from a misconception they have based on something else then I am also going to educate myself on the other topic (in this case, Type 2) so that I don’t come up looking like the ignorant and mistaken one.

Lastly, school issues.  This is a tough one for me.  I have a loud mouth, and a blog that I can share a lot of information on.  Feelings, frustrations, triumphs, thoughts, information…  But when it comes down to it, advocating for your child at their school is HARD.  Because it’s not about just shooting your mouth off.  If you want things done your way at your child’s school then you have to find a balance between being pushy, and being a push-over.  If you go in guns blazing, chances are the school personnel are going to push back against everything you demand.  But sometimes, if you go in nice and easy they just steam roll right over you and you leave feeling like you weren’t heard and didn’t get the things that you want and need for your child’s safety and well-being at school.  Finding the balance is difficult.  Forget difficult, it’s damn near impossible.  Sometimes you can’t do it on your own.  Both the American Diabetes Association and JDRF will provide information for working with the school on your own to come to an agreement about how your child’s diabetes will be managed at school.  Sometimes, doing it alone isn’t enough.  Both the ADA and JDRF have legal advocates that can help guide you and will also attend meetings with you to make sure that the laws and regulations regarding students with diabetes are being followed.  And sometimes, the school seems to go along with all your requests during 504 meetings and then doesn’t follow the accommodations that were agreed to.  Taking the steps to make sure that not only are the accommodations being agreed to, but also followed, can be a tenuous process.  But, in the end, our children are the priority and as a parent we must do whatever it takes to ensure that they are having their needs met.

Scary Things – Part 2

Monday:

Monday morning came way too early after not getting to bed until 1:30 am.  It was also the first day back at school for Angelina after two weeks of Spring Break.  I happened to actually wake up at 6:30 when David was getting ready to leave for work.  I knew there was no way I would wake up again to my alarm at 7 or 7:30 (I have two set to make sure I wake up on normal mornings) if I went back to sleep so I got up.  Blood sugar was perfectly in range.  Got her breakfast, bolus, off to school.

Went about my day, heard nothing from the school. Great!  Around 3:45 I see the bus pulled up outside our house (normally the bus turns at our corner and stops diagonal from the house on the opposite side of the intersection.)  I see Angelina coming off the bus at our gate so I went outside to investigate.  D-Mom senses were tingling again because this is just ODD.  Angelina walks up to the door and I said “Why were you dropped off at our door?”  Her response, “Substitute bus driver.”  Okay, big sigh of relief from me, nothing is wrong.  And then, “It’s a good thing because my blood sugar is low!”  WHAT?!?!  As part of her diabetes accommodations at school she has to check in with the nurse near the end of the day to make sure her BG is in a good place to ride the bus because she is the last stop and has an hour-long bus ride.  So, I said, “Okay, let’s get you some juice.”  We go in the house and she said that she alerted low on the bus. “Mom, like, it just said “LOW” but there was no number.”  If any of you use a Dexcom you know what this mean, if not – when the Dexcom just says “LOW” and doesn’t show a number it means that it’s outside of it’s readable range of 40-400, so a “LOW” reading means she was below 40, according to the Dexcom.

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Fortunately she carries a spare meter in her backpack, even though technically she isn’t supposed to.  She said her meter said 62, which is still low, but certainly not as scary as a below 40 reading.  The only problem is that she didn’t have anything in her backpack to treat the low.  I thought she had a tube of glucose tabs, but she didn’t (She does now, as of yesterday!).  She said she had a package of beef jerky in her backpack though and ate that to at least stop her blood sugar from dropping more.  According to the Dexcom she was low from 3pm until she got home 45 minutes later.  The bus leaves the school at 2:55pm and they had a substitute bus driver who knows NOTHING about her diabetes, obviously.  So she ate her beef jerky and waited to get home, fortunately the beef jerky did seem to keep her BG from plummeting further and juice worked quickly just as it should, almost too well.

We had meatloaf and brussels sprouts for dinner which was only about 25 carbs.  I was falling asleep by 8pm so passed the Dexcom off to my husband and went to bed.  I woke up around 10pm when he came to bed and put the Dexcom receiver on my bedside table.  Bg was stable and hanging around 150, which was fine for going to bed.  We all went to sleep.

Then I was woken up around 2am with Dexcom screaming that she was high, over 250.  Bg steadily went up starting just after she went to bed.  So, even though meatloaf was low carb and I used extra lean beef we still saw a fat spike, apparently.  Checked her BG, gave correction and went back to sleep.  Got woken up again 2 hours later with BG still over 250.  I have a 2 hour snooze set for her high alarm since that is the active insulin time for her and correction isn’t administered more often than every 2 hours anyway.  So I got up at 4am, confirmed BG with a fingerstick and gave more correction.  Got woken up again at 6:30 when David was getting ready for work to see that BG stayed around 250 the entire night despite a few units of correction over that span of time.  It did not alert high again though because it was reading about 245 and her high alert is set at 250.  Got up and did fingerstick again, calibrated CGM, did MORE correction and started my day by emailing her teacher and nurse to make sure that the accommodations for state testing were going to be followed since they are starting testing today.

I got Angelina up around 7:30, pre-bolused for breakfast, especially since she was already high, and sent her off to school.  Whew!

Somebody had a birthday!

Angelina is 10 years old as of 8:43pm EST Aug 22, 2013.

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Here’s how the day went:

Went to the school at lunch time only to find out there will actually be two aides who will be taking turns helping Ang in the clinic. Normally, the more the merrier, but with Ang and her specific case I do not like not having just ONE person who is in charge of things at the school. I think having 2 people will likely lead to some confusion, and possibly a delay in treatment if they have to scramble to figure out who to call to come to her in an emergency since neither of the aides full time job is in the clinic. They are both aides helping other disabled or special needs kids in their classrooms and are pulled out if/when Ang comes to the office. I’m very frustrated about this situation because IF there is an emergency with her every second counts and precious minutes could be wasted while office staff try to figure out who to call and the amount of time it takes for that person to respond and get there. Both aides are in classrooms literally across the school from where Angelina’s classroom is, and the office is halfway between both.

I was able to get the living room and kitchen cleaned in the afternoon after picking up her cake (which was beautifully done and she loved it!). David got home around 4:30, so only 30 minutes later than planned, but he bought her a rose bouquet on his way home so I think that makes up for it. She decided she wanted to order pizza in for dinner and we ate around 5:45pm. Pizza is a particularly hard food to dose insulin for because of the very high fat content it has a nasty habit of being slow to digest which means that it usually really effects blood sugars a while after her insulin has already done it’s job. She decided to only eat 1 piece though so that definitely helped. 

She loved her presents, most of them she already knew about or helped pick out, so I did have a couple surprises in there, including the movie “Epic” which I picked up when I got her cake. She got Minecraft (game) on her phone and got pretty absorbed in that most of the night. I asked her what she wanted to do and did we want to do some family time but she was content playing her game so we just all had a low key kind of night. After cupcakes we put on her new movie and when it was over it was time for bed. There was no fighting/bickering. The only thing that even stands out is she insisted on lighting the candles on her cake and kept holding the match/candle downward and burning her finger and getting wax everywhere so David started to help by lighting candles on the other side and she had a mini-fit about it but recovered quickly and was happy again. 

Now for the technical stuff about how things went with her diabetes:
I checked her blood sugar shortly after David got home and she was around 250, her target range being 100-150, so we did a correction to get her closer to target before we even ordered the pizza. By the time we got the pizza and went to eat she was around 175, which is not a bad starting point. At 2 hours post-pizza she was 213 and we went ahead and did cupcakes. She got insulin for 1 cupcake and then a separate dose with her 2nd cupcake and a glass of milk. The second dose we did as a “dual wave” which means she got a small amount up front (since she already had some insulin going to cover the first cupcake and what was left of the pizza) and the rest of her dose slowly over 3 hours to help combat the likely spike from fat content. That was around 8:00. I checked her at 11:30 again, 30 minutes after the insulin dose was done and she was 201 with a small amount of insulin that was still working. This morning she woke up at 162, which is pretty close to her target range and is a perfectly acceptable number to me.

Here is how a type 1 diabetic celebrates their birthday: The same as anyone else – with CAKE!!!   And a side of glucose meter and insulin.

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