Speedo & I Head South

Speedo and I took our first vacation ever from all 6 children this past weekend. We had a long weekend trip to Florida to visit my brother, Metro, his beautiful wife Lactose, and their super sweet little babies! My brother, and his wife were very gracious hosts and made our visit very comfortable and relaxing. We basked in the warm Florida sunshine, ate out almost every single meal until we couldn't button our pants, swam in the Gulf of Mexico, jet skied in the Sarasota Bay with dolphins and manatees, laughed often, and thoroughly relished in our days away from all those little people. It was a slice of heaven. A well deserved and much needed trip alone.

Even though we were 1300 miles from home, sans any little people, we were still connected. Still had a line of communication wide open for any emergency calls. And of course, for Betsey.

The preparation for us to go away (for only 4 days) was exhausting to say the least and the 2 days prior to leaving, I actually had several people say to me, Kinda makes you want to just faggettaboutit and stay home, huh? Don't worry, it'll be worth it.

I'm pretty organized when it comes to the children, pretty regimented. I have to be to make it run smoothly. And I am a fan of lists. I can not get through a week, let alone a day without lists. Squeezing in the amount of time it took to organize my thinking and preparation for all 6 littles, middles and big-uns for 4 short days was a ginormous mind hurting task.

(supplies needed for Betsey to stay 4 days without me...just in case...)

I really wanted all the children to be together while we were away; I felt better about it that way and I know they did too. The sleeping issue was my main concern - children tend to fall into sleeping habits that make or break the night. Our children sleep with noise, white noise. A light is optional, but noise is mandatory. Speedo and I sleep with the TV on for light and noise. Jen's family sleeps the same way we do, and I knew, if she agreed to having them all, a total of 11 kids under 1 roof for several days, that that would be a perfect match.

She agreed. And I love her for that.

Planning out Betsey's 4 days without me was so fine tuned, I almost felt like a robot. Jen came over one day, notebook in hand, pencil in ear, ready to take notes as I talked to her about diabetes. Diabetes 101. We went over about 70% of what it was going to take to get her through the days she'd have Betsey in her care. Everything from low blood sugars needing the glucagon to pump failure and who to call. I had the school nurse, 1 mom from town with a diabetic child, Yale, and a few close friends "on call" in the event of an emergency with Betsey.

Jen typed up her notes, in outline form, emailed them to me to proofread and make any corrections, and then she was good to go! I felt comfortable leaving Betsey with her. And she was confident to be able to handle what diabetes threw her.

Betsey's numbers couldn't have been any more fluctuated than when we were away. High, high numbers, 300+ to lows right before bed. It just happened to be a quirky couple of days, go figure. But I was only a phone call away. Communication by cell phone was a constant and of course, crucial to making sure Betsey did as she should to keep things relatively simple for everyone else. One night I actually called our eldest cell phone knowing she was just back from a school dance and had her wake Betsey to test her "just in case." It was a group effort to keep Betsey in a safe spot diabetes wise. If you had asked me a year ago, even 6 months ago if I'd leave Betsey, I would have quickly said No way. What a difference a year makes.

Everything turned out fine.

Betsey survived. I survived.

All the prep was worth it. The hours and hours it took me to get it all together... it was all good.

Metro - keep working hard, my friend....

Next summer... can't wait!

Ketones with a Side of Caffeine

My alarm goes off regularly at 4:30am, earlier if I am doing some insane workout that requires travel time in addition to workout time. I like it though. I like to be up earlier than anyone else, especially the little people in my house. I need to work it out before I am an M-O-M. It makes me a better M-O-M.

Today started out as any other day.... Alarm goes off. Hit snooze 3 or 4 times, knowing my clocks all run 8 minutes faster than anyone else's. After all, my house number is 8 and there are 8 of us in our family, so it only makes sense. Today was a run day-my favorite day of all to get up. I would run every day if my body would allow it. Doesn't have to be fast, doesn't have to be hot or cold out, but outside, with company, and with some music. Hands down, the best way for me to start my day. The plan was for a quick 7 miles. A very enjoyable route with a few gals.

I won't usually eat before a run, but for 7 miles I like to munch a few shot bloks for a small caffeine boost and some calories. Because they have caffeine at it's 5am in the morning by the time I get out of the house, I make sure I'm going to run and those that said they were running....are. Today, I ended up driving behind Kerry and knew she was on her way to meet up. I downed those suckers--3 shot bloks, I LOVE them!

As soon as I pulled into the parking lot, my phone rang. It was Betsey.

I thought she dialed me on accident in her sleep. 5am call from Betsey??

She needed an insulin cartridge. She felt "OK."

I peeled out of the parking lot, hoping to make it home with time to change her cartridge, something she can do on her own, but I didn't think at that point, why is she calling me when she can do this herself? and race back to the meet up, or at least catch the gals as they ran past my house.

Well, turns out Betsey was high. She was pushing 500 mg/dl!! She didn't want me to go. She felt "OK" but felt better if I stayed. And of course I would stay with her. It wasn't a question of me staying with her. But by now, my shot bloks had started kicking in and I was wide awake. They must really perk you up if you eat them and then don't burn off energy and USE the caffeine in them. Oh yea.... they certainly do.

Wide awake. With no running legs.

Bets, when did you start going high? Look through your pump at your sensor.

Umm, the sensor ended yesterday, I have no signal.

Allllrighty. Well, what did you tell me your number was last night before bed?

I didn't test before bed.

This conversation got me a little squirmy. Was it the shot bloks or was it my frustration about the lackadaisical answer? Those two missing tidbits didn't help me to determine how much insulin to give her for a correction based on how long she'd been high and if she had gone to bed high -- because her sensor ended and she didn't restart it as she knows she should do-just a touch of 3 buttons-and she didn't test before bed---the most important test of the day.

Hmmm...........

I gave her a double correction via syringe, put a temporary rate to double up her basals on her pump and we headed upstairs. Those shot bloks had me skipping up the stairs. I couldn't get up them fast enough. I thought, heck, if I won't be running today, I'll skip up the steps. Secretly, I wanted to do the steps again..... with my ipod on. Anyone need anything downstairs?? I'll get it!

I sat on Betsey's white fluffy rug next to her bed as she rocked back and forth, breathing in this almost chant-like thing she does, trying not to think about having to throw up. Her breathing changes as she realizes those nasty little ketones are getting the best of her.

Hayley's alarm goes off, and in my shot blok-ed state, it was downright comical to witness her starting her day. At almost 16, it's not something I am privy to often. She tossed the pink and white and black zebra covers off of her, threw her legs over the side of the bed, and in 4 very quick, very rehearsed steps, narrowly missing Betsey legs on the trundle beneath her, she made a dash to silence the annoying buzz that was calling her out of her slumber half way across the room. This happened 2 more times before Betsey and I made our way to the bathroom.

I had to pull Betsey off the bed. Her body almost seizes up. It's too painful for her to move when she knows she has to visit the throne. We just made it to the bathroom.

It takes everything out of her. Everything.

The day pretty much went downhill from there. I drove her to school after getting her down to about 230 mg/dl thinking she was on the down slope. Lunch time call from the nurse let me know she was well over 400 again and I was out and about and said I was coming to get her.

Basically, we spent the day testing every hour, putting on temporary rates to double her insulin basal rates, and I injected her with double corrections - all day long! She probably got quadruple the amount of insulin she gets on a regular basis.

3 site changes, 3 reservoir cartridge changes, a call to Yale and to Minimed to check the pump for malfunctioning, and she was finally a decent 131 at dinner.

Wow.

I plan to be up every 2 hours checking her because inevitably, she'll be low all night from all the insulin catching up with her.

Betsey is 12 years old. She has a lifelong condition that requires monitoring and attention 24 hours a day, 7 days a week. No break. EVER. If you slip, it can be tough to get back on track. If you slip and slide, it can make you sick. Today, Betsey slipped and slid.

She wants so much for me to be off her back, letting her do her thing, stop hovering her.... But she isn't responsible enough, nor should she be or should I expect her to be, nor is she knowledgeable enough to be able to make the decisions she wants to....alone. There is such a fine line with this crap and I honestly don't know where it is.

Do I step back, allow her to make these decisions, and then watch in the shadows the morning after a violent trip to the toilet because she didn't replace her cartridge before bed even though the pump alerted her three times to do so... and watch her cry, throw up, fall asleep from the exhaustion, slowly work herself back to "normal" and hope she understands and gets it? Or do I try and help prevent it..... always do it for her for now... Deal with her hating me always in her face. Deal with the snide comments, the looks, the mumbling under her breath...

Which is worse? It's the lesser or two evils really. And I don't know what I'm supposed to be doing. Where is the balance? Where is the handbook on how to deal with a 12 year old beautiful, smart, funny, independent, diabetic Betsey?

Hello? I didn't get my copy.

I am at a point in the care of Betsey and her diabetes where I don't know what I'm doing.

There. I said it.

I don't know what I'm doing.

I hope tomorrow is better. It has to be, right?

I'd like to have 3 shot bloks in the early morning hours, get some use out of that caffeine, and Betsey to have decent numbers all day! Please.

Wonders Never Cease....

I'm finding it hard to find time to write lately. School and all the activities that come with it are in full swing and my days are busy... Even on the days where I have "nothing" going on until the afternoons with sports, I find myself looking at the clock at 2pm and wondering where the heck the day went, thinking about all the things I didn't get done. A few loads of laundry, regular housework, phone calls, an errand or 2 and in-between play time with the "baby" -- somehow the day escapes me so quickly.

Betsey had her Yale check up on Wednesday this past week. As I filled in her chart the night before with blood sugar numbers from her meter, there were more missing numbers than I thought there would be. I record a blood sugar number for breakfast, morning snack, lunch, afternoon snack, dinner and bedtime. She'll test in between those times as needed: gym, after school before soccer, right before she plays in a game, etc. but I only record those set times of day on her chart.

Betsey asked me about a month ago during one of her phone calls home for morning snack, if she could start only calling me if she was running high or low or before gym if her blood sugar left her perplexed as to what to do (have a snack, put on a temporary rate, correct a high, etc.) If her number was OK, she wanted to be able to just carry on. I was OK with it and relayed the info to the school nurse. I stressed to her that she still had to test, had to "meter her BG" (enter a blood sugar number into her pump for calibrating the CGMS to keep the readings accurate) and be responsible. She's old enough to handle this, and I was happy she initiated it.

I look at the numbers on the chart we keep for patterns of highs and lows and adjust her basal rates on her pump accordingly. Sometimes it's a weekly adjustment, other times we sail along for over a month and things are OK.

So when I noticed some very important numbers missing; morning snack, lunch, bedtime...? I wasn't too happy. I have been trying really hard to relinquish some of the control with her diabetes and pass it onto her as she requests and I feel comfortable. I'm trying not to nag as much to test. I try not to grab her pump and look through it for information. I've just kind of been watching. Sometimes biting my cheek knowing she's not quite in tuned as I'd like her to be. Overall, she's doing a fine job.

The most important number of the day is a bedtime one. It's the number she's going to sleep with, the one that sort of indicates how the night will go, or at least makes me feel like it's an indication of how the night will go. Of course, the reality is, diabetes is not predictable at all like that.

So when I see no lunch numbers popping up in her meter and no bedtime ones, knowing that I always ask for a bedtime number and she always gives me one, I realized she's playing me. She gives me a number she "thinks" she is if she doesn't feel like testing or the number her CGMS is showing on her pump -- it's accurate, but not as accurate as a finger stick.

We show up for clinic and meet with Andrea, (pronounced An-DRA-uh) whom Betsey is quite fond of. She actually whispered to me in the waiting room that she "hoped we get Andrea!" It takes Betsey a while to warm up to someone and she is finally warming up to Andrea. A good thing. I want her to feel comfortable as she gets a little older to be able to discuss diabetes nonsense with someone from Yale if she doesn't want to discuss it with me.

As I've mentioned before in my blog, the A1c test is one of the first things done at the appointment and I anxiously await the results - it's the main reason for going for the quarterly visits. I never know what to expect, and I don't think Betsey does either. I think we both always expect the worst. Then, no matter what, we're pleasantly surprised when the % is lower.

6.3%

What??!

I looked at Betsey. My mouth open. What??! Her last visit she was 6%.

Her little round face turned red, she was smiling with the pink elastics on her braces, giving me the classic, "Toldja so" look.

I was shocked.

Here's my thinking..... First, the CGMS is so beneficial-I love having it. It gives readings of constant "blood sugars" and a much better picture of how Betsey reacts to foods, exercise, stress, weather... It helps keep her close to her target blood glucose of 100 mg/dl and we can fine tune insulin dosages for her. And I really think what I mentioned in my post How We Do Diabetes about being so tight with her control, her loosey goosey ways, leave enough wiggle room for everything to still remain tight for a decent A1c.

Just my guess.

Maybe to all the "seasoned" parents of diabetics, and the diabetics themselves, it's an ignorant statement. I don't know. But whatever it is, it's working and I am psyched!

Oddly enough, part of me was........ not disappointed, but concerned maybe that it wasn't higher so I could have had the "Toldja so" look . I had gotten on Bets about the missing numbers and lack of testing. I figured the carelessness was going to be evident in the test results.

Not this visit.

I just love her to bits.... I want her to live a long, long time. This is why I am that diabetic kid's mom...the annoying one. And 6.3% is damn good.

Another pleasant note --- She and her sister Libs are running their first official road race tomorrow! It's a short and flat 5K and I am so happy about it!! At the end of the summer, 2 of our children did a "Mighty Kids Triathlon" with a group of their friends--it was extremely rewarding to watch, very inspiring and a pleasure to photograph! That post next!

Good Luck to Betsey & Libby in their first timed run tomorrow!!!!

Hartford Marathon

This weekend was a big weekend in terms of accomplishments!

My brother in law, who 6 months ago, was a donut-lovin member of the HPD, ran the Hartford Marathon!!

Four months ago, I brought him out on a training adventure to help prepare him for the Niantic Bay Tri that he had signed up to do. He couldn't put his face in the water and the slightly less than 1/2 mile swim at T&L's Training Camp was almost enough to completely tire him out. I thought, wow, he better kick it up a little if he wants to do this race in a few weeks!

That same day we did a quick transition and headed onto our bikes for a speedy 12-15 mile loop, and as soon as we got on the main road, he completely wiped out on his bike and busted up his knee. He did the ride with me, but it was not smooth.

The NBT came and went; he finished with great time!!

He then signed up for an olympic distance triathlon in CT and then the marathon in Hartford.

Unbelievable. He is now a 30 pounds or so lighter, and a fit member of the HPD - a role model for all his peers. Job well done LDS!

A few friends ran the half marathon in Hartford this weekend as well, and I'll admit, I kind of wanted to do another one after the Niantic one I just did. The timing just wasn't right.

Hawaii's World Championship Ironman was in Kona also on Sunday, and I had the video streaming live on one of the computers all day. As I came and went I caught snippets of it. It made me nervous, excited and anxious for the next season to start.... not that I have any desire to do a full Ironman...... buuuuuut Amy has officially signed up for Louisville 2010!!! I believe it is the same weekend for the 2010 JDRF ride, so I plan on hopping a plane down there to see her cross the finish line after I bike the century. If I'm not participating in it, I certainly wouldn't miss her finishing for anything!!

As the "off season" draws near, it's hard to slow down and regroup - there's a balance to be found, and I can't quite figure it out........

So I decided to sign Speedo and I up for ballroom dancing ..... It starts this week.

I can not dance. At all. Not even the hokey pokey.

Should be interesting......