Friday Flashback!

A year ago next week, Amy, Jen & I along with several other friends completed our first triathlon - Niantic Bay! This picture speaks volumes! We were so proud of ourselves, so emotional upon finishing and just elated with the event itself! Good times!

Next week on Sunday we'll be at it again! This year so many friends have decided to join the ranks and will be going hard along with us. What an exciting adventure!! Good Luck to all!

1 Month From Today & Macklin!

One month from today:

The big one-oh-five mile ride! Egads!

And a Happy Birthday to my brother and sister in laws
new baby boy, Macklin!

9lbs, 11oz

If Only...

There are a couple of things in life that tickle me pink like nothing else.... one of them are sandy, salty kiddies after a very long beach day. I love being at the ocean in Rhode Island... the waves, the sounds, the smells... It's very calming and soothing and my children love the atmosphere there. I capture my favorite shots of the 6 little blondies all year long there! If only they liked having their pictures taken.

What I think captivates me the most is the way little people are at the beach. They seldom argue with each other (now that I've said that the rest of the summer is going to be WWIII), they tire themselves out in the endless rolling water, and they are content with virtually no toys! It's all about utilizing what's there. If only they acted this way all the time.

Watching Betsey yesterday for almost 3 straight hours in mighty high waves was so liberating. She wasn't thinking about anything except for whether the next wave was going to be bigger than the last... if she needed to get out, when was the perfect time to escape the next rolling thunderous wave? Should she jump with the next wave or dive in depending on where the break would be? Her mind was filled with thoughts that they should be. Kid stuff. Lots of screaming with excitement, tons of laughter as she and her sister bounced around in the surf, and oodles of other kids surrounding them enjoying the same feelings. If only summer were every day.

I enjoyed watching. I got in on some of the wave jumping/diving/scrambling! But I was always thinking... thinking about Betsey's blood sugar. Thinking about when she should get out and test. Thinking about keeping her high enough so a low blood sugar didn't creep up while she couldn't feel it in the water-the sensation of a low masked by the water and adrenaline. Thinking about how fast I could make a run for it into the pounding surf if a wave scrambled her and she had no energy to gather herself. Thinking about how nice it would be if I could just let her ... be. If only diabetes had a cure.

What you Can't See Isn't There

When I swim in the pool, my eyes are open with the random blink, as if you're not even swimming. There is no effort one way or the other because the goggles are a barrier. I stare straight down at that black line and follow course. There is the occasional hairball or fuzzy that floats by me and I may give a scowl or an underwater ewww, but it's quite pleasant. It's familiar. It's everything you expect. No surprises.

Swimming outside in the open water, be it the reservoir or another lake or the salt water, I do not open my eyes. I don't want to know what's in there. There are surprises.

This morning a group of us met in Old Lyme and the water was beautiful. Cold at first and then quite pleasant even with a sleeveless wetsuit. The tide was on it's way out so even quite a ways off shore, you could stand and the water was up to our chests. We swam quite a distance, maybe a little more than half a mile, and we all popped our heads out and discussed the swim and how much further we'd go. The junkie amongst us, the one who shows up to swim in a thunder storm waiting on the beach for anyone else to appear, mentions all the cr@p she's seeing in the water.

That one thing might have been a rock, but whatever it was, let's move this way.

Someone else chimes in, There's a lot of stuff in this water today... the fish are . . Stop right there.

Let's not discuss what we see and what might be in the water we're currently sharing with others' natural environment. Let's not shoot the sh*t about critters and stuff on the bottom and things we're feeling moving past us and next to us. Let's not even discuss the water temperature changes because why is that spot warm right there?

I don't want to know. I don't want to know any of it. I want to think that if I feel a bump or a nudge from below, it's a bubble in my wetsuit, caused by me. If my toe skims something, it's just a piece of seaweed. If I spot a fin in the distance, shucks, it's only a rock.

Let's go with that. Let's not discuss it further. Cause I don't want to know. If I can't see it, it isn't there.

This is me when I'm swimming, and this is the water I see when I swim:

Terramuggus Gets Speedo

The rain was inevitable yesterday afternoon - a large green patch of precipitation was headed straight up the CT shoreline with warnings of flooding and the occasional gust of 40mph wind. It lingered here at our house for an hour, enough wetness for me to think the bi-monthly Triathlon in a neighboring town was going to be a washout. No one from our group was going, they all bailed - with the exception of one, who was hanging on to the last minute in case Speedo decided to go ahead with it. I gave Tim the late word that it was a no-go after trying in vain to get in touch with Speedo to hear his final decision. I had assumed with the rain he wouldn't do it.

I assumed incorrectly.

Speedo wasn't going to let it slip away from him. His mind was made up. He had mentally prepped for the race, was already doing it in his mind. He had well thought out the day of good eats. The packing had been done meticulously the night before, all spread out on the kitchen table, complete with a checklist of what was needed for his first triathlon. This one is a great practice run, complete with timing chips. A wonderful prelude to the big "official" one so many of us are signed up for again this year.

He called me from the beach, moments before the start, asking for well wishes.

What???

I packed the little people into the big rig and we zoomed down to the triathlon, almost an hour away. Meatballs still on their faces. Hair bows missing. Mismatched make shift clothing. I covered up what I could with matching yellow raincoats!

We made it in time to catch him coming in from the 10 mile bike and headed out for the 5K run. He looked GREAT! Ready to run! I guess the bike route was pretty wet at that point, but luckily, there were no terrible falls or accidents. It was raining and it was wet!

Speedo's finish time was 1:43! Not bad at all for a guy who doesn't necessarily train! A bike ride here and there, a run as he has time and only enough outside swims to count on one hand this year. I was impressed!
We had our own cheering section complete with war whoops and some serious clapping. GoGo got the hang of the clapping as people came in from their bikes and out for the run and she was the biggest clapper! But her war whoops sounded like starving monkies or sick whales. I had to gently redirect her excited self in the hopes of not distracting any athletes. She likes to be right in the thick of things.

She insisted on carrying Speedo's bike stand for him when we packed up to head home. She made it about 10 feet. Congrats Speedo - you did awesome!! You didn't finish last and you didn't stop once! Way to go! Another great accomplishment. Half ironman/woman husband/wife next year?

Happy Birthday Amy!!!

To one of the most beautiful, positive, thoughtful, caring, honest, dorky, forgiving, influential, charismatic, hopeful, selfless, optimistic, funny, athletic, nurturing, & passionate women I know...

You make every day fun.

Delighted to call you a friend. ♥I love you girl!

Happy almost-40th!

The One Good Thing

Summer shots suck.

There's no other way to put it.

The extra stuff we have to pack and take with us anywhere is a lot to remember and for some reason, stresses me out. I haven't memorized the insulin to carb ratios yet for the different times during the day that determine how much insulin to fill the syringe with to pump into Betsey if she eats or if she is high and needs a correction. And I have to give her a shot every time she eats something over 10 grams of carbohydrates. Yesterday she had a total of 9 shots! I feel a little "OCD"ish when we leave the house, asking Betsey over and over if she remembered this, that and the other thing -- five or six times. She never answers me nicely, it's always a "Yesssss......." with a heavy sigh involved and the occasional eye roll. She is 12.

There is no rhythm to her numbers, no rhyme or reason. It's a guessing game with how much Levemir (long lasting insulin) to give her in the morning and again at night - all based on her pump settings. And with the Novalog (fast acting) I know how to figure it out, but sometimes she just doesn't eat what we bolus (give insulin) for. And then we're stuck. With the pump, she boluses for the food, and if she decides not to eat half the yogurt... no big deal. We put a temporary rate on the pump to slow or lessen the flow of insulin going through her tubing into her body. No problem. A lot more flexibility.

The first night of shots a few days ago, I was so nervous about giving her the insulin before bed... Scared to death of a low in the middle of the night.

One that would keep reacting to the insulin.

One that wouldn't stop.

How do you fix that? She has to eat. Fast sugars to bring her number back up. And if she keeps dropping -- food. Who eats food in the middle of the night?

I gave her the dosage of both insulins the nurse suggested. Speedo and I tested her 2x that night. Both times, low. Good grief. Hate that.

"Betsey--wake up.... here, have this sugar tab ... you're low."

She chewed it as she rolled over and grunted, wanting to be asleep, not bothered with sugar tabs at 11:30pm or again at 2:30am.

Then I have to stuff another one in her mouth. 2 sugar tabs to treat the low.

Yuck, especially at that hour of the night/morning. I hear ya, Bets!

So the next night I dropped the insulin dose down a unit on one and only bolused for some of the night time snack.

Both blood sugar checks that night -- high. Do you correct it with a shot in the middle of the night?? I didn't. I can't. It makes me nervous. Really nervous. I have a hard enough time falling back to sleep as it is. Speedo too, poor 40+ year old! :)

Speedo and I are on nightly duties now; up twice during the night, just like in times past, to check Betsey's blood sugar to make sure she's at a safe level to sleep. I can not sleep well while she is on shots. Just can't do it.

Honestly-- I don't know how people do it. The insulin pump is the only way to go. It is HUGE in terms of overnight security with a child diabetic. Huge.

Yesterday we spent the day in Rhode Island - one of our favorite places to be. Real sand, real waves and salty water - the sights and sounds I grew up with. Betsey was in the water almost the whole time. She checked her blood sugar as I asked her to. There were no worries about not having insulin running through her because the Levemir in the morning took care of that.

There is one good thing about shots....Betsey seems to enjoy her body feeling free of the pump. She loves not having to wear it. She loves the disconnection of diabetes I think she feels because that constant reminder is not attached to her belt or in her pocket. She loves that no one asks her what it is, or that people don't look at her when she has to use it. It's almost like she's a diabetic and only she knows it - no outward appearances give it away.

She's content with the shots....despite the small brusing on her arms from the multiple injections. Despite the pinch she feels with each shot. Despite the extra stuff she has to carry with her.

It's her choice for the summer, and we're going with it. I keep telling myself.... it's only a month and a half......

Great news²

We had clinic today and Betsey gave me such a hard time leading up to the appointment. She just doesn't like going. She even mumbled a "I hate this..." just before we opened the door to the waiting room. Part of that may have been because we had ALL her siblings with us - always a treat to go to doctor's appoinments with an army of little people in tow. I don't suggest it unless you plan on self medicating after the appointment - which I didn't do, by the way, but a thought for the future.

Actually, the littles were fine ...... until the littlest found the bathroom which had a pint sized loo in it that was too fun to use just once.

And flush..... with her foot. And soap right at her level. And paper towels. And the light switch.

Good times.

But we had a good visit, good news all around! The first is that Betsey's A1c has dropped, again, and is better than ever! She was thrilled to receive this news, as was I. It's always a shock, no matter what her A1c is... I always expect the opposite of whatever they tell me - good or bad. I don't know why. Last visit it was 6.7%. Still excellent, but a 6% today- are you kidding me??! Those crazy lows she's been having surely dropped it down. What could be better????

More GREAT news -- Betsey will be participating (we hope!) in the Closed Loop Study involving the Artificial Pancreas headed by Yale Pediatric Diabetes Program! See video ~here~ from World News Tonight with Charlie Gibson. I believe it starts up in the fall. We hope to speak with the Research Department handling the project tomorrow and firm things up. She meets all the requirements necessary. It will involve wearing the sensor, her pump and managing this other apparatus and will require at least 2 overnight hospital stays and maybe a few extra visits to monitor the study.

Betsey agreed to it. No questions. No arguing. No eye rolling. Nothing. Just a head nod and a smile.

I am beyond excited! See?! This is where the money raised by thousands of riders for the JDRF Ride to Cure comes in handy -- they are on their way to finding a cure!! Slowly, but surely.

Day one of shots tomorrow. Ugh. We have to fill the scripts for more needles. A minimum of 5 shots a day. Minimum. Every time she eats and it's more than 10 grams of carbs, it's a shot of novalog.

On the bright side- it will give her wounds a chance to heal on her site injection spots and time for the bruising to go down.

It's things like this that make her happy. Rainy days and shots. Who knew?

Providence 70.3

Yesterday I had the privilege to be a spectator at the Amica Providence Ironman 70.3 that a few of my partners in crime competed in. This was THE Half Ironman everyone was going to do originally, and then the REV3 came about when Amy suddenly had to have her thyroid removed because of some malignant growths.

She signed up for the REV3 to be able to do a 70.3 this year just in case her surgery left her with little energy to be able to regroup for Providence. I signed up for that one to support her, and to "just do it."

I left home at 3:45 a.m. to be in Narragansett by 5:15. A long day ahead of me at that point but I was fired up, camera in hand!

The race was awesome yesterday - I was in awe of the athletes, their gear, their physical fitness levels... It was remarkable to see what hard work does to a body and how well these people can perform. Amazing.

I am most impressed with my group of friends who trained hard and well and pulled off, all variables on the course considered, a job well done! The swim in Narragansett Bay was a disaster - the officials actually gave the option to the athletes to back out of the swim and do a duathlon. The water was rough, the wind was whipping and it looked scary from the shore. The waves of swimmers going out barely swam with any consistency, from what I could see from the shore. They were sighting often, breast stroking, and some of the pro's were even doing the butterfly do navigate over the white caps! I was elated to see Jules come out of the water when she did, she was in the 3rd wave out and did excellent on the swim!

This was the winner: Mike Lovato. 3:54

I enjoyed watching the athletes transition from bike to run at T2 in Providence. It's amazing to me the little time the pro's spend switching shoes, getting nutrition and doing the little they do in that time. Their T-times are less than 2 minutes usually! Mine are like 5 minutes! Time to stop dilly dallying!!

It was a great day! Congrats to all of them who competed! Next order of business is a couple small road races, a couple more Sprint Tri's and then - the JDRF Ride for Betsey in VT! I am about $400 away from my $3000 goal! Woooohoooo!

I participated in a mini Sprint Tri last Thursday night in a nearby town. It was fun. Would I do it again? Maybe not. The atmosphere was very cool... fun, and the people were great. But I can not exercise at night. Anything I've eaten during the day comes back to visit me, I get bloated, my legs are heavy - I just perform so much better in the morning. I am glad the ride for Betsey has a very early start for this reason.

We have Betsey's clinic appt. tomorrow, and there are a few things on my list to speak to them about:

• the artificial pancreas project

• the Medtronic Quick-set recall

• switching from pump to shots (ugh, makes me get butterflies all over again)

• vision issues

I brought Bets to the optometrist recently for a baseline on her eyesight, because many diabetics end up having issues with their eyes. Hopefully we can prolong Betsey's almost inevitable issue with this by maintaining excellent blood sugar control. But I wanted to ask some general questions about the eyesight situation and be more informed about it. I don't feel like reading about it online or in my books. I'd rather discuss.

And Betsey went for her first jog with her younger sister & Speedo last week! She wore an Ipod & running skirt like her mama and she LOVED it! They did a mile loop and they want to do it again this week. What fun is that? Little runner girls! :)

World News Artificial Pancreas Report!!

Check this out!!!

Charlie Gibson's World News Tonight did a report on Thursday night about Yale's Artificial Pancreas Project! (Thanks Dad for the heads up!) Dr. Stuart Alan Weinzimer is one of the doctor's at Yale where we bring Betsey. She is in good hands! How exciting!!

Prosthetic Pancreas Poses Promise

Shared via AddThis

Off Topic - Humiliated Pup

I am not naming names, but someone in our house is not good on a leash. I know she's only 8 months old now, but we need to start behaving better on the leash. Our neighbor saw Betsey and her sister walking a certain someone the other day and said to me in a gentle way, "Have you ever heard of a Gentle Leader?" suggesting someone was taking some children for a walk rather than the other way around. I explained to our neighbor that we had one, given to us by another Golden Mommy, but it got chewed off the first day we tried it.

Someone has a lot of pride and doesn't like the look and feel of the Gentle Leader.

We, on the other hand, the humans in the house, find it beyond funny, absolutely hysterical! We bought a new one yesterday and tried it on for size.

Yea, not happy.

Someone is mortified wearing this apparatus. It doesn't match their fur, it doesn't look feminine and it just doesn't look cool.

The referenced blondie refuses to move when this thing is on her. Refuses. We can dangle a treat in front of her, throw a shoe to fetch, run and dance and encourage interaction .... nothing. Not a budge. She refused to use the lawn facilities, didn't want to come back inside.... just laid there. Pathetic.


Humiliating. What are these people thinking??

Medtronic Quick-set Recall

A package left by UPS had me wondering what I won on ebay and had forgotten about -- until I noticed the return label from Medtronic, Betsey's pump supply manufacturer.
Inside was a fresh box of Quick-set Infusion sets that Betsey uses with her pump and a notice informing us of a voluntary recall on all Quick-sets with the Lot # beginning with an 8.


"The situation is related to the tubing connector. Approximately 2% of the affected infusion sets (which represents approx. 60,000 infusion sets out of an estimated 3 million infusion sets with customers) may not allow the insulin pump to vent properly. Venting is necessary to equalize the pressure in the reservoir compartment with the surrounding atmosphere. If the vent does not work properly, this could potentially result in too much or too little insulin being delivered and may lead to serious injury or death."

I frantically opened Betsey's hutch and looked through the basket we keep the Quick-sets in. Sure enough--every one of them marked Lot 8, and 3 more unopened boxes also with Lot 8. We have a total of 5+ boxes of Quick-sets with a recall, and probably went through 3 months supply of more!At Betsey's last clinic appt. her nurse suggested a problem with the sites because Betsey's numbers were fluctuating, and sure, it could be puberty, but in her experience perhaps it was a bad site, and maybe there was an issue with the sites she was using. She suggested I call Medtronic and make them aware of it.
I can't call myself dumb, nor foolish or ignorant, but maybe uneducated about this, and also lack of experience, because I did not call Medtronic. I figured, this too shall pass. And left it at that. We had had so many problems with Betsey's last insulin pump and the infusion sets we used-terrible situations leading to kinks in the tubing so delivery would stop - overnight - sometimes having to change the site daily because it would just clog or get tired fast. They were awful. So this new pump and the infusion sets were a dream because there is virtually no problems or complications. Maybe I chose to hang onto that.
In any event---here we are, a recall, and the nurse was right!

I have to send all these recalled sets back to them and they will in turn send out new boxes.

Is this the explanation to Betsey's uncontrolled fluctuating sugars in the last 3 months? Was it all because of the crazy sites not working properly? Or was it just a phase, a growth spurt? We'll never know, that's the thing. because even if we start using the new sites, and her numbers even out, we could always attribute the funky last few months to her growing, her age, hormones, stress, activity levels, etc. Diabetes is almost a guessing game. You just never know. And we never will.

Summer + Diabetes = No Fun

Diabetes sucks in the summer.

There's no way around it.

I forgot how much differently things go when school gets out. Or maybe I chose to stuff those memories of summers passed since Betsey was diagnosed.... packing those summers away deep in my head, laying dormant, only to have the feelings of frustration, fear, and the unknown reappear annually when the school bell dismisses the little people for summer break.

Beach days are the hardest - it's easy peasy when we're there, which is all the time, but no matter what we do, it all seems to throw everything for a loop later in the day into the wee hours of the morning. Her blood sugars are OK until about 3 in the afternoon - usually hovering on the low side, even without the pump on--it's the swimming. Has to be. She eats when I tell her to, tests when I remind her (begrudgingly) and for the most part, accommodates my nagging about it. I give her the little finger gesture from the beach if she is not in ear shot and it cues her to hop out of the water and test. Often, she is low when she gets out of the water and hasn't felt it. Not good. Not safe.

Early in the mornings, I test her before I leave to do my morning thing. I sneak in her room, find a finger buried deep in the summer sheets, scoop up some blood and wait as it counts down.... 5...4...3...2...1.... Always low. Every time. 40's, 50's, hovering around low 70's... I've adjusted her basals daily, sometimes a couple times in one day, decreasing insulin for the late night and early morning hours, increasing for afternoon highs... Nothing is working.

The other morning I was out doing my thing. I had tested her before I left, woke her up enough to gulp down a juice to treat the low, put a temporary rate on and felt OK leaving her.

When I got home, Speedo pulled me aside.

Betsey had gotten out of bed when he woke her, but was acting off. He had come downstairs and she appeared on the stairs shortly after, walking one of the marionette puppets she just gotten for her birthday. She was giggly and talking gibberish. He knew she was low. She didn't want to test... she was confused, silly, disoriented. She was in fact low.

After the low was treated and she had eaten something, Speedo discussed it with her, kind of giggling about it with her younger sister because she was acting so goofy.

She didn't remember.

We have clinic next week at Yale - her regular 3 month check up. I'm not even as concerned with the A1c this time as much as I am setting a new plan in action for summer. Everything is so unpredictable, so much more than usual.

And Betsey is not feeling well with the highs and lows. There's no stability in her sweet self - she's up, she's down. Last night before bed she was 488!! Where the heck did that come from??? We had to break out the needle for a shot. She is crabby and ornery a lot of the time, and not able to express why.

Not fun.

We'll see what happens next week when we start doing shots again.....

12 Years Ago Today....

Dear Betsey,

12 years ago today, you filled your daddy's and my heart with such warmth. We had no idea that you would be more wonderful that we ever imagined a child could be.

You have, over the years, made us laugh, cry, think, wonder and guess. Not a day has gone by that we haven't been thankful to have had such a blessing as you dropped into our laps. We are amazed daily at your strength, your determination, your never ending optimism. You look at the world through rose colored glasses, always seeing the humor in everything, always able to make a joke out of something that isn't even funny. You make me laugh so hard sometimes, to the point of tears. You make your father scratch his head in amusement, something that makes me laugh all over again - especially when you bombard him with math questions.

Your siblings love and respect you, more than you know and realize. You have given them a gift with your example of courage. You have given all of us a reason to be thankful for health and to understand the appreciation of life.

You are an example of the finest quality of a friend to your friends. You are safe, honest and loyal. You are true to who you are in every way. Your confidence is a beautiful attribute to your sweet self. Your happiness is infectious, your smile contagious.

When you blow out the candles on your peanut butter squares tonight, and you make your birthday wish, I too, will be wishing the same as you. I pray every day we can share in that joyous day together sooner rather than later. You deserve only the best, my sweet girl.

Happy Birthday! I love you.

Love, Mommy