Round Two…

The poor kid.

As if losing the genetic lottery, and a functioning pancreas, isn’t enough, the poor boy got my teeth as well.  His first set of braces were in 3rd grade, before he was diabetic.  He was looking a little bucky-beaver like, so they put a mini set of braces on him to pull the front teeth back in.  It worked wonderfully, and he only had them on for about a year.  Two years later it was time for phase two, before he hits his growth spurt.  *snort*  That kid is doomed to be short, endo pegged him to top at at 5’9″, but I digress.  The orthodontist put on (in?) a Mara Device with a pallet expander.  The whole thing is stainless steel.  He broke it twice.  By grinding his teeth.  The first one lasted almost 6 months, the second, a around 3 months.  The orthodontist gave me a lecture with the first one about not eating carrots, hard food, sticky candy (as if), and didn’t quite believe me when I said he hadn’t.  When the second one broke, she did.  And then she decided that perhaps that wasn’t the best appliance for him, and since he was nearly done, she switched him to a Twin Block appliance, which looks like a retainer on steroids, and you get one for top and bottom.  He wore it until school started when I gave up trying to enforce it, and he kept “forgetting” it.  But it worked!  His bite is lined up nicely, and now he has a full set of braces.

The problem is, his mouth hurts.

No shit, you say, that’s what braces do.  It will go away in a few days, so just feed him soft foods until it does.

Sure.  Soft food.  Like what, mashed potatoes, mac & cheese, pasta, pudding, ice cream, smoothies?  All high-carb food.  A diabetic nightmare.  But hey, we’re managing.  Smoothies with no sugar, some protein powder and Greek yogurt (36 carbs for 2 cups), instant mashed potatoes (1/2 c, 20 carbs), the low sugar oatmeal he normally eats works well, but he’s still working on the PB sandwich for lunch.  This weekend, once the worst of it is over, I’m going to make apple dumplings (50 carbs) as a treat.  We’ll balance that out with meat and veggies, no bread or potatoes, and the meal carbs won’t be too bad.  And I think he deserves it.

 

One of my T1 mommies posted this on facebook and I like it.  I have no idea where it came from, or who wrote it, but I thought it was worth posting.

 

Hello there!

I don’t care about the color of your skin ,or how much money you have in the bank.

It doesn’t matter to me about political views, or where in socially you may rank.

Your child may be very popular, or maybe they haven’t started school.

I’m simply here to shut down their pancreas, now taking care of me is the #1 rule.

My name is Type 1 Diabetes and once you’ve got me, I don’t let go.

You will constantly be checking on me to see if I’m high or low.

Yes, I am the center of attention because there is no cure for me.

It’s all about monitors, needles and pumps and taking care of all my needs.

 

Hello, Type 1 I guess we haven’t met.

But if you think you’re taking over,well, you ain’t seen nothing yet!

We are the anchors, the fighters, the heroes called Mom and Dad.

And believe me when I tell you we’re the worst enemy you’ve ever had.

Our children are our lives, and we believe in support and prayer.

Though we don’t have a way of beating you, they are constantly in our care.

We’ll make sure the lives they lead Are as normal as can be.

They will run, jump, dance, play sports, eat what they want, and we’ll adjust accordingly.

You may have been a set-back, but you don’t have complete control.

Managing you and wiping you out has become our only goal.

We will fight you ’til the end and we’ll make a lot of noise…

We are a force to be reckoned with, we are the parents of type 1 girls and boys!!

Trials and tribulations

The other day Kerri had a guest post from Abby about diabetes trials.  I’ve looked at them for TB and I don’t know if I’d enroll him in one that involved actually taking meds.  I haven’t had to make that decision because there haven’t been any that he qualifies for in the area.  Like Abby says, its a catch 22, and a moral dilemma that I still haven’t got my head wrapped around yet.  I’m asking for someone else to put their health on the line, but won’t risk my son’s.  Its kind of that “not in my backyard” thing.  I’d love to get in a trial with Animas for that new pump, or with whoever is working on a closed loop system, but taking meds?  I don’t think so.  I rationalize it by saying he’s still so young, he’s at high risk for celiac, and that is one thing I do not want to run the risk of triggering.  Trials regarding info gathering, and blood draws, no problem.   Those we’ve done.  I filled out a god-knows-how-long questionnaire at his endo’s office so somebody can mine the data and look for commonalities, and every year my non-d daughter gets her blood taken so they can find out why he has a broken pancreas, and she doesn’t.  Yet.  I get the comfort of knowing she hasn’t (yet) developed the antibodies that indicate her immune system is on the warpath, and they get whatever they get to figure out why his did and hers didn’t.  She gets a boatload of praise, a prize and the satisfaction of knowing she’s making a difference.  Really, even at 8 she gets that she’s making a difference.  The prize she picked this year was a Trial-net t-shirt saying she’s making a difference.  She wears it all the time, and talks about what that means.  I hate that she has to care and feel like she’s helping.

And now for something completely different

Not. Today was site change day. For those not living in the diabetic world, that means TB gets a new infusion site for his pump. Instead of getting shots several times a day, he gets one slightly bigger shot that leaves a tiny catheter type thing for the insulin. Today his sensor also decided to quit. In all honesty, I lost track of how old the sensor was. Officially the sensor is used for three days, but really you just restart it after the first three days are up. When it timed out the other day, I just restarted it. So when it errored out
I had him take it off. He doesn’t like it, so I expected no argument. Since he has his first track meet Tuesday, I figured we’d put it back in tomorrow night.
The hubs put his site on tonight (he needs the practice) and I sat there and distracted TB. He’s just as nervous as the hubs is when I’m not doing it. The surprising thing is that he asked if we could put the sensor in too. Knowing how much he hates the thing, I asked him why. I expected some bullshit answer because it was bedtime and inserting the sensor requires numbing cream which takes thirty minutes to work. The Pittsburg game started around bedtime, so I figured he was trying to wrangle some game time. But no, the kid surprises me by tearing up and saying he doesn’t like being high or low. Now it’s not like he actually looks at the thing, but apparently the alarm gives him a sense of security.
It’s nice to know he’s starting to care about these things

Invisible Illness week

30 Things About My Invisible Illness: 2011.

Last week was Invisible Illness Week, and type 1 diabetes is definitely in that “invisible” category.   I’m a day or two late, but so what.  The stupid disease doesn’t go away, so I’m contributing anyway, better late than never.  While I  don’t have diabetes, because my child does, the whole family is affected.  Even TG because she frequently has to take the back burner while I or my husband deal with a diabolic  diabetic issue.  I stole the list from Kerri at SixUntilMe

1. The illness I live with is: type 1 diabetes

2. I was diagnosed with it in the year:  July 2009

3. But I had symptoms since: April? May? 2009.  TB was drinking and eating a lot more, but we chalked it up to baseball, making sure to stay hydrated, and a growth spurt.  He never did go DKA (for which I am truly grateful)  but he still had it way too long before we caught it.

4. The biggest adjustment I’ve had to make is: For me its weighing everything and figuring out how many carbs are in recipes we make at home.  Fortunately I’ve found Spark People’s Recipe Calculator that let’s you plug in your ingredients and figures out the carbs per serving.  For TB, it’s having to test ALL THE TIME.  He doesn’t wear the CGM religiously, and when he does, he doesn’t look at it.  All of us have to think ahead a little more than normal.  Nothing big, but constant stupid things like making sure he has some smarties on his person when he walks to a friends house, or jogs around the block.

5. Most people assume: That someone else in the family has it too.  Well, one of my cousins does, but he was diagnosed as an adult and had leukemia in his 20′s.  Leukemia means all bets are off.

6. The hardest part about mornings are: When we have to do a site change before school.  I am not a morning person, and he hasn’t been able to screw up the courage to do it himself yet.

7. My favorite medical TV show is: House!  He doesn’t have one, he’s only 11 and I’m not letting him watch shows with major illnesses.  He’s got one, he doesn’t need to worry about something else he might get.  Believe me he will, and that’s an 11pm conversation I don’t want to have.

8. A gadget I couldn’t live without is: CGM and pump.  Him? well, his pump (Percival) obviously, but he’d probably say the computer or DS

9. The hardest part about nights are: He’s not awake to feel a low, and doesn’t wake up (yet) when they occur.  Couple that with his dislike of the CGM and we’re talking a BG range of 150-200 overnight.  Sometimes I feel its a tossup between killing him slowly or killing him quickly.  For him, its screwing up the bedtime routine order.  He hates brushing his teeth only to then test and find out he needs a snack and has to brush again.

10. Each day I take 1 pill & 2 gummi vitamins.  He’s a kid and we have well water, so aside from the insulin 24/7 he gets fluoride

11. Regarding alternative treatments I: Maybe for T2′s, but for T1, I call bullshit.  No amount of cinnamon, diet change, cheese, or nightlights are going to make it go away.

12. If I had to choose between an invisible illness or visible I would choose:  I don’t know.  “You don’t look sick” has to be the four most annoying words on the planet, but on the other hand, it’s up to him when and if he chooses to share his disease.

13. Regarding working and career: I am fortunate that my work, home and his school are so very close (within 5 miles) and my work is so very flexible.  I have to get to go on all his field trips and take him to the endo 4x a year, and have, on occasion, had to go do an emergency site change.

14. People would be surprised to know: that I’m really not as organized as his diabetes makes me.

15. The hardest thing to accept about my new reality has been: that it effects my daughter too.  She gets bumped to second class during a BG event, and is always has to wait before meals while we figure out his carbs.  She’s jealous and has told me so; we try to minimize the second class citizen thing, but it doesn’t always happen.

16. Something I never thought I could do with my illness that I did was:  I have no clue, we haven’t restricted him from anything.  Yet.

17. The commercials about my illness:Piss us all off.  There’s no differentiation between T1 and T2 and no matter what the old people say, you need a lancet to test, and that hurts.

18. Something I really miss doing since I was diagnosed is: making my own insulin. (Kerri said that, but I’m leaving it)

19. It was really hard to have to give up: my sleep?  We’ve never limited him, but he self limits sometimes

20. A new hobby I have taken up since my diagnosis is: Activity! I’ve made him be more active and he even joined the cross country team (and likes it!)

21. If I could have one day of feeling normal again I would: sleep.  He would eat things like cinnamon buns, Italian bread and cotton candy until he was sick.

22. My illness has taught me: to be more organized, and he has learned to be more responsible.

23. Want to know a secret? One thing people say that gets under my skin is:Should he be eating that? or He can have some berries, I only put a little sugar on them to make them sweeter.  (ARGH!  They’re effing berries, they don’t NEED sugar)

24. But I love it when people: check with me before hand to see if there’s anything they need to know before inviting him to something.

25. My favorite motto, scripture, quote that gets me through tough times is: Why do we fall Master Bruce?  So we can pick ourselves back up.

26. When someone is diagnosed I’d like to tell them:That it is really really hard at first, but it does get better.

27. Something that has surprised me about living with an illness is: the amount of other kids in my community that have it also

28. The nicest thing someone did for me when I wasn’t feeling well was: when the neighbors coordinated my daughters care while my husband and I were staying at the hospital learning how to be a body part.  Seriously, the community stepped up and passed her around for three days, including a sleepover so she didn’t feel scared or neglected.  My mother (the kids usual caregiver) was away, and my in-laws were worse than useless.

29. I’m involved with Invisible Illness Week because:my kid’s pancreas is on a permanent vacation

30. The fact that you read this list makes me feel: like someone else gets it.

 

Same song different verse…

A little bit louder a little bit worse.

Here we are again, me writing a blog post while I wait for TBs blood sugar to rise. I finally got things adjusted the week before school, so now we’re figuring out the new adjustments for during school. I’ve noticed his insulin needs go down during school, I have no idea if it’s typical, but it does make sense, kind of. Add in an active sport (cross country) for the first time in his life, and I’m winging it. A lot.
So far we’ve been lucky. This school nurse is nowhere near as good diabetically as the last one, but we’re making adjustments.
So why am I waiting for bg’s to go up? Glad you asked, pull up a chair and I’ll fill you in, there will be a test at the end, but don’t worry about getting the answers right, I never do.
Normal day – bg before cross country was 93, so he had about 25 carb of cheese crackers. Bg after practice was 100 something, so we’re all good. Dinner bg was 157, and he had 84 carbs of breakfast-dinner. Pancakes, eggs, toast, bacon – nobody felt like cooking complicated. Bg at bedtime 120, so all is good and he went to bed. An hour later, 9pm, I check and he’s 78. Crap. So I get a gogurt (14carbs) and finally get him awake enough to eat it. Thirty minutes later and the CGM throws a low alarm. I just fed him, so I figure it catching up to the 78, clear and ignore it. 20 minutes later, it alarms again and the graph is ping down, not up. Nownim figuring the damn thing has gone off, and needs to be calibrated, so I test him. 68. 68? WTF! Test question – How in the hell can he keep heading down after eating unbolused carbs?
Damned if I know, so I’m giving him a juice box and testing again.
Did we over estimate the carbs for dinner? We never seem to get pancakes right. Is it a weeks woefully exercise catching up? Should I start the lower temp basal an hour earlier? Or maybe they should just fix this fucking disease already.

Good morning?

It’s 2am, do you know what your diabetic’s BG is? The problem is I don’t.

TB is at a friends house for a sleepover – TG is too, so the hubs and I had a quiet night. There are few, actually three, people I trust my son’s life with enough to let him spend the night with them, and one of them is my mother. The other two are families from school who live close by and “get it” as far as a non-diabetic family can. So when the one mom asked on the spur of the moment if my kids could spend the night with her kids, I said yes. TB is wearing the cgm because we’ve been trying to get some major highs under control, and since he’s been running so high, I figures it wouldn’t be a problem. Right. It is totally a problem, obviously, or I wouldn’t be writing a blog post at 2am.
He tested at 10 and was 250, so I had him take the suggested correction which was less than a unit. One unit brings him down about 100 points so he should have been fine. Two hours later, she checks his cgm and it’s showing 84; he’s really 64. A roll of smarties, a PB sandwich and an hour later he’s 119, and his cgm shows him steady at 115 for the past half hour. Now what do we do? If he were home, I’d be checking him every two hours. Neither one of us wants to have him come home because, dammit it’s not fair. She’s fine with frequent checkings (she doesn’t work), but I feel guilty, and obviously I’m not sleeping. We ultimately decide to give him a gogurt, and test at 3. If he’s not above 150, she’ll call me again.

This sucks. I can’t sleep and I do have work tomorrow and he’s going to be a hot mess of cranky because of the low and being woken up.
I want to know why they haven’t fixed this fucking disease yet.

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