Ooof.

Well, today was Endo day around these parts! I have to admit, I had no idea what the visit would bring. No clue what his A1c was going to be.

That's where the "ooof" comes in.

This time his A1c was 7.7%. Which, if you may recall, is almost a point higher than he was last time (oh, that lovely 6.9. How I miss you!)

So, that's a bummer. But, I knew it wasn't going to be as good as last time. You've got the holidays thrown in there plus an entirely new insulin delivery system, going from Ping to Pod. Plus? He grew an entire inch in the last 3 months. Needless to say, I'm not surprised with our result.

Still, I said "Ooof" out loud when Dr. H told me his A1c. He laughed and said, "Really, that bad, huh?" His Dexcom graph from last week was a HOT MESS, I tell you. I said that out loud, too. :) I even had little red arrows on it, explaining all of our HIGHS and LOWS. Just so he doesn't think I'm a totally inept D-mom, you know.

We made LOTS of changes. Basal and I:C ratios. He is now at 1:14 for the morning mealtime hours and 1:16 for the afternoon/evening hours. Which is a pretty big jump, so I am going to have to be on his numbers like white on rice these next few days.

And for those interested (I always am!) here are his new basal rates (for my 60 lb., 4 foot 1 inch 5 year old!):

12am: 0.30
4am:   0.35
7am:   0.40
12pm: 0.45
6pm:   0.40

So there you have it. Our report card for the last few months. It certainly wasn't pretty, but I'm confident (sorta?) that we can get better from here.

Mom's Gold Star*

This has been an interesting diabetes week in the Drew household. We've had low lows and high highs. But things have gone swimmingly thanks to my new buddy.

For those of you who have followed our journey, you know of my intense love/hate relationship with Dexcom. It just never worked well for us. We'd get 2 or 3 good days out of a sensor, then ??? or a sensor error.

This little wonder? Has been SPOT ON. I mean, numbers matching EXACTLY what his PDM says. For an entire week! So this is what y'all rave about!! We've finally experienced Dexcom nirvana after a year and a half. Usually we lose control with Dex after a fast drop or a fast rise:

 

Not this time, baby! Dexcom actually did what it is supposed to do. It helped me see this wicked fast drop, then allowed me to treat before he dumped further than 94 and he leveled off in the 140's for the night.


This week Dex was much needed. Adam had to go under anesthesia on Tuesday for an eye procedure, and Dex was right there, which the anesthesiologist loved. I was able to see that he was dropping before the procedure, so I could effectively temp basal (no food/drink after midnight) and I saw a slight rise in BG from his anxiety right before and after. We also had a cannula pop out yesterday (hence, that HIGH on the Dex above!) and while I rage-injected...I was able to head off the impending low.

The planets aligned for us this week. No, D didn't behave (it never does) but at least this week I had an extra friend to help me out with it.

Dex, won't you please be good forever? I promise I'll give you lots of gold stars. :)

New D-Mama Alert!

I just found Melissa's blog - Shots for Sugars - and wanted to have y'all go over and give her a big DOC welcome! Her 3 year old daughter, Sierra, was just diagnosed late last year.

Welcome, Melissa! I think you will find the diabetes online community to be a wonderful place full of great people, stories and advice. Having a little one with diabetes is tough - us d-mamas have to stick together!

OmniPod Update!

You know how it's been a long time since you've blogged...and you keep meaning to do it, but then you can't think of anything to say...even though you have a lot to say?

I guess that's what they call "writer's block," eh?

Anyway, I was reminded that "I really need to blog about OmniPod" after reading Kristen's post today about their switch from Ping to Pod.

So, it has been exactly 1 month since we started podding. Dang, it seems like it's been A LOT longer than that! Because I think I totally grew some grey hairs during this past month. The good news is that podding is finally going really well. Really well. Aside from those pesky post-pod-change highs (I'm still too squeamish to go full blast on the temp basal, but it bites me in the ass every time) things are evening out.

We had quite a few pods rip off for various reasons - I swear, my kid just has a knack for pulling out insulin pump sites. But, now we've realized that tape is a must (Hypafix seems to be working well for now) and if we do that - we're golden for the full 3 days. I also bought an arm band from Bands 4 Life, but he doesn't love it so much. His favorite site is still his belly. The 2 times we've tried his rear end, we've gotten blood in the cannula, so I think we may have a "clencher" on our hands. :)

There were plenty of times I was ready to drive over the pods with my car, and slap his Ping back on him, but I'm glad we stuck it out, because Adam loves the OmniPod. In fact, he has become so much more involved in his own care than I ever thought he'd be at 5 years old. Last week, I was upstairs and he asked for a snack. I was busy, and I said, "Not now - just wait until I can come down and bolus you." And he says, "No ma....I can do it!" I hesitated for a split second and then I thought, what the heck? So he yelled to me that he was going to have a granola bar and told him to bolus for 17 carbs. And he did it!! Of course, I ran right down to check, and I saw that it was delivering the appropriate amount of insulin. He was so proud of himself! He liked it so much, the nurses at school have had to practically wrestle the PDM away from him so THEY can practice bolusing him! It has given him great independence and a sense of ownership over his diabetes that I think he didn't have before.

I was also able to let him go to a playdate at a friend's house the other day - I know the mom fairly well, but she had never cared for Adam before. She called me when Adam wanted a snack and he tested himself while I was on the phone with him, and then bolused for the snack! I had done the calculation in my head, and double-checked with the mom that it was delivering the right amount. It was another great milestone for us.

So, I have to say that now, I do love OmniPod, mostly because it has given Adam a lot more confidence in handling his diabetes. Now, granted, I do 98% of the finger sticks and bolusing, but it is great that he has an interest and CAN DO IT if he needs/wants to!

In December, we realized our transmitter was NOT working well on the Dexcom. Fortunately insurance paid for a new system, so we are using Dex again. And it has been spot on for the most part, which has been a comfort during this transition period.

Adam sees the endo here in a couple of weeks and I'll be curious to see what his A1C is. If I had to guess, I think it will be up a bit, since we had a rough go the last few months.

So, that is our update. Hopefully it won't be another month before I blog again... :)

The Verdict?

Well, we've been "podding" for 10 days now.

Do I like it? Yes.

Do I love it?

No.

After being on the Animas Ping for a year, and having our own struggles with that, I wasn't naive enough to assume that switching to OmniPod would be smooth sailing. But I did have a teeny, tiny hope deep down inside that it would rock our world (in a good way, of course!) I didn't expect a bent cannula, blood in the NEXT cannula and a ripped-off pod in the first week alone.

I have come to the following conclusion: All artificial insulin delivery systems suck ass in their own special way.

**groundbreaking, right?**

Sigh. Don't get me wrong. The pod is super neat. I like love the PDM. The bright screen, the intuitive software. It's awesome. I'm working around the lack of IOB just fine (although, he's been so dang high, that has NOT been an issue.)

There are a few things working against us, I suppose. It's been an exciting week (Did ya'll hear that it was CHRISTMAS??!!) He's complained of pain in his legs, which always mean GROWING pains, which means basals probably need to be increased.

I put his Dexcom on him for the first time in months, but it's been giving me the ol' three-question-mark salute every night when I need to see what is going on. We should have a whole new Dex system arriving tomorrow, since our warranty expired on the old one and I suspect our transmitter is just kaput.

Do you guys ever just feel like saying F&%$ it, and go back to shots? Because man, MDI seems so much easier at the moment. There are fewer variables. You KNOW the insulin is getting in. There's no bent cannula/blood in cannula/ripped site or pod crap.

So the verdict is in. Pumps are a wonderful tool in delivering insulin, but they are all far from perfect.  Adam, on the other hand, enjoys being free of the tubing so much, that we are going to keep "podding" along until we get it all figured out.

2012, please be kind.

Last Year...

Last year at this time, we were waiting to start pumping with the Animas Ping. Our pump start date was January 7th...who knew that exactly a year later, we'd be switching to OmniPod? I guess it just goes to show you that you just never know what life has in store for you...I'm trying...slowly, but surely...to accept that I simply cannot plan ahead, no matter how hard I try. Going with the flow is something I've had to learn quickly since Adam was diagnosed.

I was reading my blog entries from last December:

I still feel like this is all a dream I am going to wake up from. I read your blogs…I identify, I relate and then I sit back and go whoa…this is me. This is my life. This is HIS life. He has a disease. It is not going away. And I still can’t fucking believe it. I had a great talk with a friend last night and I think I haven't quite reached the acceptance stage yet.

All I want for Christmas is to feel normal again. I want to go back to the person I was 4 months ago. No one likes the person I am now, least of all me. I am changed. Our family is changed. And while in the future, I may see some things as a blessing, I don’t feel as if we are changed for the better and that hurts.

Parenting is the single thing that brings me to my knees on a daily basis. Even before Adam’s diagnosis, you walk around each day as a parent, wondering how you are going to screw them up that day.

Parenting a diabetic child and his sibling is even harder. I know you all understand.

 

Do I feel any different this December? I suppose a little bit. I'm not mourning (as much) what was lost. The fact that my 5 year old will never know life without insulin, will never not bolus before eating...will always carry this burden with him until a cure is found. I pray and hope he doesn't grow up seeing it as a burden, but I know there will be times that he feels it is. 

 

I was reading Wendy's blog post from today, and got a pit in the bottom of my stomach at the thought of sending Adam off to a playdate, 20 minutes away....with someone who knows nothing about diabetes care. And she did it! She trusted Sugar, and wow....my hope is that I can do that someday too. :) 

 

Some things are different for the better this year. I have a full year of d-care under my belt. I've become a master at guessing carb counts. I know how to navigate Adam's pumps and I can do a site change in no time flat (which will be even faster with OmniPod!)  But I still stress that I don't know enough. When to change his I:C ratios...basal rates. I've learned to ask for help. I email his endo when I'm lost...we try, try, and try again until we see some semblance of "normal" numbers. 

 

I still bristle when people ask if his diabetes is "under control."  I get tired of explaining over and over and over again that YES he can have candy, we just have to cover the carbs with insulin. That NO he did NOT "get" diabetes from eating poorly, that it's an auto-immune disease that was in no way his fault.

 

I'll make a little d-mom confession here...one of the reasons I'm excited about the OmniPod is for the same reason Adam is excited: no one will know. And if no one will know? Then I won't have to explain over and over and over again...

 

And to close out this random, highly scattered post...I just want to send a shout out to all the d-mamas out there. I have learned MORE from you all than all the doctors we've ever seen. When we need supplies? This community is there to share what they have when others need them. I'm continually amazed at the wonderful generosity and spirit that we all share. ((hugs))

And the glassybaby goes to...

Ha! You thought I'd say it right away? Tee hee...

I should have posted this earlier, but Adam has been sick with a nasty cold and we've been enjoying some nice daytime naps. Haven't gotten anything done the last few days, but snuggling with my boy and the kitty has made for some cozy afternoons. And I've watched more Big Time Rush episodes than I care to admit...let's just not talk about that, mmmkay?

So, I had 9 entries...which made the chances that much better for all of you that entered. :) I printed out the comments, cut them into strips and put them in Adam's hat:

And then....he picked one!:

What...you can't read that? Damn camera - I focused on that cute face with the red, runny nose. Here's what it says:

It's WENDY!! Wendy, Wendy, bo bendy, banana-fana fo fendy...me my mo mendy...WENDY!


Sorry...not sure where that song came from. Must be feeling goofy tonight! 

Wendy, my friend, you are our winner. Yay! Email me at mylifeasapancreas@gmail.com with your address and I will send it to you. Luckily, I don't have to send it far. :)

On that note, we have been busy Clark Griswold-ing our house for the holidays. One of the perks of having an 8 year old is that I didn't have to decorate one of our trees - she did it all by herself!

We also have another "helper" this year:

Yeah, she's not much of a help. She's pretty much un-decorated the bottom of each tree. She's too cute to be mad at, though!


And for kicks...I have to share this ornament that Adam made last year. I LOVE it and he HATES it. I keep finding it upside down behind the tree. Then I promptly put it back up, front and center.

It makes me chuckle!

In other news...our OmniPod has arrived! We've got pods, a PDM and a nervous mommy. We aren't training until the 16th (my choice) so that we can get used to it over Christmas break before I have to re-teach his nurses what to do.
That's the news from here...time to put my little rugrats to bed. Tomorrow is FRIDAY...yay!