Dear adult daughter:

It occurred to me yesterday as I was looking for a new lancet device, to add to the list of what we will do for our daughter as an adult (see #2). Of course we hope to be the parents of adults who are always there for each of our children. We don't want to be taken advantage of or taken for granted, but I hope we can be relied upon for emotional or, if needed, financial, needs. K's in a unique situation though compared to her two older brothers, so here's what we'll say to her:

Dear adult daughter:

Please know that your father and I will always be there for you. You can call us anytime (or text, or whatever the THING to do is once you're an adult) for whatever reason. When it comes to your diabetes, we hope we have taught you well. We have taken care of you the way you need to take care of yourself for the rest of your life so that you can live a long and healthy one. Here are a few things we promise to you:

1. We know diabetes management is a big responsibility and a lot of work, and unlike a job or school or any other commitment (including parenthood!) you never get a break from it. If there is ever a day or group of days in which you "don't want to do diabetes", come to us. We'll count your carbs and bolus for food, we'll check your BG and correct if needed, we'll go over your numbers to see if settings should be changed, and we'll change your pump if needed.

2. Having diabetes is also expensive. You'll have medical costs as a young adult most people your age will never have to consider! We will always pay for those extra expenses, until you're worth more than we are :)

3. We will go to your endocrinology appointments with you when you want - because sometimes two sets of ears are better than one.

We love you so very much,
Mom and Dad

Most her life...

If my cursory math is correct, today marks the day my daughter has had t1d half her life. So from here on out, she'll have had it "most her life." She's getting more adept at dosing herself (with supervision) and understanding how many carbs are in commonly eaten items. At the same time she's becoming more vocal with her displeasure of having diabetes, such as after the girl scout meeting the other night when she couldn't have snack because her blood sugar was too high, repeating, "I hate having diabetes" multiple times. In these moments, I let her know she has every right to be angry and hate diabetes once in a while.

I think it will be easier that having t1d is all she knows, but she sees the rest of us around her and knows that although frequent BG checks, counting carbs, bolusing (dosing), pump changes, and waiting to eat because of high BGs are her "normal" - they're not "normal".

I'm sensing a theme...

At dinner on New Year's Eve, we went around the table with our resolutions. When it was K's turn, she said, "to be rid of diabetes." She then had a teary conversation with her dad while the rest of us tried to be festive. Last night, while celebrating her birthday, she said her birthday wish was "to not have diabetes anymore." I could have been sassy and told her that because she didn't keep her wish a secret, it wouldn't come true, but I only said, "probably not this year, honey." We hugged, no tears (by her...).

Which brings me to my JDRF fundraising recap: as any of you who kindly donated know, we raised over $14,000 towards a cure for type one diabetes this past fall. We will keep working for a cure and are excited by the new discoveries and advances we hear about. A lot WILL happen in K's lifetime - and until then, we are vigilant with carb counting and BG checks and remind ourselves as well as K, that she can do anything other kids can do (except drink juice or soda). Of course, it's not that easy, and K's biggest complaint is having to wait to eat when her BG is too high. She cannot be as impulsive or "free" as other kids/people - but she can do the same things -and eat the same things, just not as freely (or quantity in some cases...).

On this day, 3 years ago, K started getting insulin from her Animas pump. It changed all of our lives dramatically. The previous 5.5 months of shots were some of the hardest months of my life. She NEVER got used to shots, and she got them multiple times a day, including during sleep (if her BG was too high). As I've said before, the insulin pump is not a cure, it is (exhausting, frustrating, amazing, yet still fallible) life support.

We always appreciate your continuing emotional support!!

oh, diabetes, you're such an unpredictable scamp

Die - uh - bee - tuss, as Wilford Brimley used to pronounce it, is so insanely unpredictable. I know I haven't posted in ages. As I say, I'm already living the dream, so I really don't feel like writing about it most of the time! But there is rarely a day that does not involve a "what the - ?" It's usually the inexplicable highs or lows that cause us the most anguish. I can deal with a pump inset that comes out before breakfast on a rushed school morning. Or the monotonous nights of checking her near midnight and at 3AM. Although her BG reading may not be predictable at those times, the waking has become so. However, when she runs close to low through the night two nights ago - and then running too high last night for no obvious reason, or when last week she was running low after lunch and this week she's high (pretty much the same lunch, same activity level and same amount of insulin...) - that drives us crazy. We make adjustments after we see trends over days, but too frequently we just have complete randomness!
This is a time of year where we raise money for a cure. It is a very encouraging time for us as we get so much support from family and friends. Please consider donating to our JDRF Walk for a Cure team. We want a cure for all type 1s!!

Traveling, with diabetes: wish us luck!

We've done this once before, but the following things all have an impact on K's blood sugar: 

• Lack of sleep from red eye, including insanely late departure time and plane change/layover equivalent to the wee hours Pacific Time
• Adjusting to three hour time change 
• Stress of needing seats moved - oh wait- that stress is just on us as the parents, right? (we're the circles in rows 23, 35 and 38.) The open blue seats cost from $74 - $94 more per seat. I don't think so.... We'll see what we can do at the airport - again, well after the kids' bedtimes. Ohmmmmmm.

Killer carbs

K's favorite bagel is the cinnamon crunch from Panera. It has, get ready, eighty-one g of carbs... Oy. Regular bagels have over fifty. Go for the donuts, people, that's all I'm saying... 

YEAH for Tegaderm!!

We seem to have to relearn how to do the beach every year. This is what K's inset looked like after our first beach trip this summer. The brownish stuff in the middle there is sand. I never even unplugged her pump that day - and the sand still got in. When she was close to 400 mg/dl after we got home is when I realized there was a pump problem and saw this. 

At our next beach trip, I remembered to bring lots of Tegaderm. Tegaderm is generally used for wound care -but we use it roughly every three days when we numb a spot on K's tush with lidocain cream (for inserting the new inset) and it has to be covered for about 30 minutes. But at the beach, the ones we have are just big enough to cover the inset to keep sand out!  This is what Tegaderm looks like for those that don't know. 

The white part peels off and it is very sticky and creates a seal with the skin. 

Our second beach trip was much warmer and K was instantly ready to go in the water, so the pump came off and a Tegaderm went on. She was hungry soon after, so the Tegaderm came off so the pump could click into the inset, during which time, she cannot go play in the sand. Then a new Tegaderm goes on until she wants more to eat or needs to be checked otherwise, and so on and so on.  Frequent checks are definitely needed during an hours long trip to the beach; if she's not wearing the pump, she's going to go high, despite the activity. So, beaches still aren't easy, but with extra diligence, it's enjoyable for our K. 

Summer programming update:

I went every day last week and yesterday at 9:45 - the time K checks herself - as health clerk dosed her with meter/pump, at first, walking her through it and then sitting there quietly in case she had questions. Today, I told health clerk I'd come because I know she is more comfortable with me there and it's not that inconvenient because my gym class ends at 9:30 and the school is on the way back home. When my phone rang at 9:44, I was a block from the school and said "I'm almost there." The health clerk said, excitedly, "I did it!" She checked her early because apparently K was feeling low, so went a few minutes early to check herself. It was perfect because she wasn't low and the health clerk dosed her without me around - proving to herself she could do it. It was the perfect situation.