Monday, September 08, 2008

Gone So Long

First.

I am so sorry to have left you all hanging-- we're here, and we're fine.

I think.

So much has happened since my last post, I don't quite know where to start.

I guess an explanation for the silence might be the best place.

Now, I could just say I haven't posted because we've been busy -- DANG busy -- with multiple trips out of town, beautiful weather, preparations for school...

All true.

But that's not the only thing that's kept me away.

Bottom line, I just couldn't bring myself to write.

And for a a while now, I didn't know why.

Until this morning -- after walking Evan to school (yes, you read that right-- Evan. To school.) -- I started thinking about the blog, and the word "fear" came to mind.

Why?

Because I haven't kept Joseph's blood sugars remotely stable all summer.

Because, as a result, his A1c jumped back up-- this time to its highest since diagnosis.

8.6

And finally, because I haven't had the strength to talk about it here.

It's ironic, really.

For despite a somewhat rocky start, this was probably the best summer we've had since Joseph's diagnosis: countless baseball games; trips to see family, friends; an amazing week of diabetes camp for Joseph, "Gramma" camp for Evan, and "Parent" camp for me and Ryan.

And through it all, Joseph grew. A lot.

(Criminy, he's almost as tall as me!)

But the fear, that all this fun was coming at a cost, also grew.

Don't get me wrong-- we didn't ignore the diabetes. No. We tried to get some semblance of control.

But it was impossible.

You see, it wasn't that we weren't logging, it was that so much changed so fast -- virtually day-to-day -- that we couldn't make sense of the data.

Well, summer's over.

Time to get back to work.

(And hopefully, back to the blog as well.)


18 comments:

Shannon said...

Sandra welcome back!! I missed you.

I could've written this post. While events during the summer were great, Brendon's numbers were not due to growth spurts and now I realize it was also due to stress from being with his brother and sister day in and day out. I fear he'll have the same kind of A1C. Now that he's back in school, his numbers have done a 180 and are now at the lower ranges.

You are not alone in all of this!

Scott K. Johnson said...

I've missed you guys too!

And let me tell you, if I could have pulled off any single digit A1C's through my growing and teenage years, I would have done backflips!

Sandra Miller said...

Shannon-

Thanks, I missed you too.

And Scott-

I could kiss you.

Thanks. :-)

Bernard said...

Sandra

Good, no Great to hear from you.

I wouldn't worry too much about an 8.6 for part of the year. I remember looking at some old A1C cards (they used to send me results on plain postcards in the good old days) and my A1C was 11.0 at one stage. Despite that, I'm still kicking around w/o any real problems, thank you God.

It sounds like you all had a great summer and that's probably more important that the A1C value. If he's growing like that then I think all is well. I hope that you'll just let this number go.

I hope school is good for him and not too stressful for you.

Molly said...

Sandra,

So glad to hear that you guys had a great summer! Sounds like a lot of fun events.
And really, 8.6, that's not a big deal in the grand picture. I, like Bernard, had plenty of elevated A1c's as a preteen/teen. That's just the way it is--hormones, growing, weird eating, etc.
Sometimes happiness and fun= healthy.
:-)

Scott said...

Sandra,

First of all, welcome back! As someone else once wrote, "life gets in the way" and I've been silent for more than a week (although I have had time to comment on others' posts), and I've got many things to address, just not a lot of spare time to fit it in!

Second, I think you are worrying (as any good parent would) about some numbers that in the grand scheme of things, are unlikely to have material impact over time. Trust me, having been there since being diagnosed over 32 years ago, I still haven't suffered from so-called complications attributed to hyperglycemia, and there were literally entire years (like when I was in college) where control was, frankly, a joke. In the grand scheme of things, I suspect that what matters most is the effort, not the actual numbers, although many statistically-oriented doctors love to argue otherwise they still can't explain why some people suffer complications and others do not. I suspect some divine intervention also takes place when it comes to determining who will suffer issues, but best efforts under the circumstances are often rewarded!

Colleen said...

Yay! You're back!!
I can't advise on teen T1's. I was never one. BUT, just teen boys, well I had two of those, and their lives/bodies are constantly changing and evolving. Summers and no school were a whirlwind. I imagine Joseph's d has a hard time keeping up with that.
Oh my - Evan in school. Can't wait to hear what she thinks about it.

Ashley said...

welcome back! i had just gotten into your writing and you left.

sounds like a fun summer. sometimes we have to pay for them. puberty did a number on my control too, growth spurts, activity, fighting with sibs. don't let it get you down. he'll get totally back in control real soon.

glad you're back.

Darling16 said...

I enjoy your posts and glad your back. I've experienced the same summer as you. My three year old grew like a weed this summer and trying to make sense of her numbers seemes to be impossible and we continue to struggle through it. Our next appt. is monday and I am already talking myself into a higher A1C to avoid a possible break down in the doctor's office. You are not alone.

Kerri. said...

I'm glad you're back, Sandra!!!

And I can empathize with the A1c issue. My pre- and post-wedding numbers left a lot to be desired, so I'm in a similar boat. But we can only get better from here, right?

xo - k

Minnesota Nice said...

.........gone, but not forgotten.
Best wishes to both kiddos for a great school year ahead!

Sandra Miller said...

Bernard-

Thanks.

As of this writing, school has been very good for him. :-)

Molly-

I know. In my heart, I know that's true. But, sometimes when I see those numbers I just get scared.

Scott-

Wonderful comment, thank you... :-)

Colleen-

Thank you.

And Evan is loving school-- though I'm not sure they know what to make of her... :-)

Ashley-

It's good to be back (though, I won't feel like I'm really back until I get caught up on everyone else's blogs! :-)

Darling16-

Thanks.

It was all I could do not to break down at Joseph's appt. But like you, I prepared myself for a higher A1c. Yes, it still hurt to see it, but it was not unexpected.

Thankfully, his numbers have already improved since he started back at school...

Kerri-

:-)

That's right. Only better. :-)

MN-

Thanks for continuing to check in, and for the kind thoughts.

So far, both kids are groovin' on school. :-)

Anonymous said...

As you have said he has grown "a lot." That plus the fact that there is no schedule usually during summer vacation. Unless he is getting the same exact amount of activity and eats at the same time every day, eats no junk food, difficult to control the numbers. I'm sure you will see a change for the better now that he is in school. If not, so much easier to adjust since you have a known schedule. That A1c will come down now, I'm sure of it! P.S. During growth spurts, we have had to adjust by up to 150 thru 170% temp basals (evenings and early nights only, YDMV), checking every hour, hour and a half from 9pm until 3am. I could not believe how much we need to increase insulin during growth spurts. Very scary.

Jamie said...

Welcome back Sandra :) So good to see you back writing!

I'm glad you had a very fun, busy summer and despite the increase in the a1c, like others have said, in the grand scheme of things with the growth spurts, no routines of summer, etc., etc., things will get better :) You're so hard on yourself! (Tis the frustration and nature of this disease.)

I'm glad to hear that things are settling now that he's back in school (and *gasp* Evan has started too!). Where does the time go?

Sandra Miller said...

Anon-

Honestly, the amount of insulin Joseph takes in during growth spurts just blows me away.

Crazy...

Jamie-

So great to hear from you, too.

How are you? How's Danielle doing? I'm sure both your girls are just growing like weeds!

Indeed, where does the time go? :-)

Marcus Grimm said...

Just to echo Scott's post: I've been Type 1 for 24 years -- with many teenage A1C's in the 8-12 range. And I've never suffered a single complication.

Your persistence is admirable and in the end - it will make a HUGE difference - but never be scared of a single A1C or a single bad reading, because they're both made up of moments, and life is full of bunches and bunches of moments.

Anonymous said...

Glad to see you back Sandra. I have really enjoyed reading your blog. I'm hoping I can word this quite right...but your recent entry helped me to see that EVEN YOU struggle with control/A1c's. You should know that you are way up there in my mind of diabetic moms. Sometimes when I would read your previous posts I would feel bad about what I was not giving my kid--guilt guilt guilt---I'm really good at it. I guess we are all in this together and thank you so much for your honesty. Wendy

Michele Ward said...

Sandra - I'm so glad you're back - I had to de-lurk to let you know!

My 9-year old daughter changed pumps this summer (cozmo to omnipod) and I thought we'd never get her ratios and bg stabilized. But when you're trying to control your child's diabetes, stable is just an illusion isn't it?

Parenthood is riddled with so many opportunities to question our parenting choices I sometimes feel overwhelmed too. I keep telling myself it's a good thing I'm not perfect - I'd be setting unrealistic examples for my kids. :)

I'm glad you're back and everyone is off and running on a new year!

Michele