Site Change

Every 3 days we change Betsey's infusion set, which she currently has in her bum. The site lasts for 3 days before it gets "tired" and the insulin flow may diminish or just block all together. Sometimes if we're even 8 hours late, meaning we were due to change in the morning but waited until before bed, she'll go high - pushing 300's for no reason, and I just know it's the site.

Ever since Betsey has been on the pump, I have been the one to change it out... just because. Bets is more comfortable because she thinks I can just get it done, I know what I'm doing, it's all business. On occasion Speedo has had to do it.... one time I was away in Florida, one time it was an emergency change... but I'm on the phone walking them through it. (I also have a smidgy bit of a control thing going on, too...) Even at school, I'll race down there and change it if need be.

It makes Betsey wince when we get ready to do it. She shudders. She closes her eyes. She makes a funny noise. She'll even giggle sometimes. Sometimes she says, "wait...wait...wait...ok, go...no WAIT....wait...alright....no, I'm not ready, hold on....." I'm embarrassed to say I have not inserted one in myself to "understand" the pain. I know I should-what is my hold up? Why am I such a wimp when she is so stoic and brave??

I have tested my blood sugar with that little poker that feels like it's cutting the tip of your finger off when you use it--what is up with that?! The pain lasts for hours!!! I actually put a band aid on mine when I'm done. A Dora one.

Anytime I've had to help console a friend who insists their child has diabetes because they have symptoms that mimic Betsey's initial ones (and I am NOT poking fun, honestly, it's just the way of us moms to be so paranoid) I tell them I can test their blood sugar right here, right now, and tell them if their sugar is too high. Dr. Meghan on call. I insist it doesn't hurt, a quickie poke. Hold still... not a big deal... the whole time I'm thinking YOWZA, this little gizmo sucks!!! The children always do better than I do when I test myself. Maybe they don't have as many nerve endings in their teeny tiny finger tips?

Betsey's infusion set consists of the actual site which is attached to tubing and a round end piece with another needle that hooks onto her insulin cartridge that goes into her pump. The cartridge pushes insulin through the tubing and into the needle in her bum, which adheres there with super sticky tape. 24 hours of insulin delivery--as close as we have right now to a pancreas. This keeps her alive. Amazing, isn't it?

(The infusion set Betsey uses ... the circle in the 2nd picture is around the little needle that inserts and then is retracted leaving a cannula under her skin that delivers the insulin. Note: that blue thing is the inserter to get the needle in in one swift motion-it doesn't stay connected to Betsey. )

One time, about a few months into Betsey's pump wearing days, she decided she didn't want to change her site. She took it out and decided we were NOT under any circumstances putting it back in. (This was a different pump than the one we have now, a different infusion set-it hurt more.) I was kind of speechless, I didn't quite know how to handle it because she had always just gone along, with the occasional grunt or sigh or comment-under-her-breath. I let it go. I felt so guilty, so badly about forcing her to hold still and let me jab this thing in her. It wasn't even about her having to have the medicine, the insulin to keep her alive, all of a sudden I felt like I was completely invading her, completely disregarding her feelings after all this time. She didn't want another needle, she was sick of the poking, she was done. And this was only months into it. Sweet dear, we have years of this ahead of us.

It was just after dinner time and we had a couple hours before bed time. Finally, after 4 hours, I talked her into it. It wasn't pretty, it wasn't easy, but I didn't have to hold her down. I don't know what we would have done had it resorted to that.

But she did cry. And she did go to bed without giving me a hug and a kiss. But she had her medicine.

Recently, I was out and Betsey was home with her older sister. She called me-- she was high. She felt kind of yucky. She needed a new site--we had forgotten to change it the night before, and she needed a new site. I told her I'd be home in about 1/2 an hour, any chance she could do it herself. "No way!" I suggested she try it, I'd walk her through it. She could do this. "No." That was that.

I hurried through to finish in the store. My phone rang.

"I did it."

"Betsey?"

"I did it, Mommy, I changed my site! All by myself!"

"What?! You did?? Betsey!!!!"

I was so excited, I couldn't believe it, I was so happy for her - this was huge! This was a major accomplishment for her!

"You filled the tubing?"

"Yup."

"No air bubbles?"

"Nope."

"You did 'fixed prime'?"

"Yup."

"You did the whole thing, you even inserted it yourself?? Hayls didn't help?"

"No, Mommy, I did it myself!"

And since then, she has done it 3 more times. By herself. Remembering every step, taking care to do it properly and methodically.

(Betsey filling the cartridge with Novalog insulin.

That little vial is her medicine lifeline.)

Friday 5 - things you might not know about me

(a couple days late!--oops!)

1. I'm very loud in the house, but shy and quiet out in public.
2. I absolutely love to skateboard and ripstick! (And she's good at it.)
3. Whipped Cream is my favorite food ever!
4. Horton Hears a Who is my favorite movie ever!!
5. I love a summer night with rain, thunder, and lightning. That's my favorite thing about summer.

Maiden Voyage

Wow. I am psyched about the turn of the weather so we can be outside on bikes! And double-wow, the bikes are awesome!!! This morning Jules, Amy and I ventured out for a quick 18 mile ride through a couple surrounding towns, got a feel for our legs out on the road again, tested out our new rides... heaven!

Thanks to Niantic Bay Bicycles and Amity Bikes, the Jamis and Cannondale are super sweet and will serve us well over the next few years. Absolutely delightful to ride on, comfortable, not to mention super pretty! It was so "easy" and smoooooth. I love the bike! What a difference it makes in the weight, the shifters, everything. I can't believe it.

It was a little bit cold still, especially since I didn't have warm fuzzy socks on. Jules was the only one who wore her woolies, and I was a smidgy jealous. My toes were FROZEN and even though I insisted I had frostbite (anxiety anyone?) Dr. Amy assured me I didn't, and of course, when I got home, my toes were intact, albeit frozen together. Almost. I'm definitely wearing woolies next early morning ride if it's under 50 degrees.

How to dress approprietly is still an issue with us - you don't want too many layers, but you don't want to be cold; there is nothing worse than being cold on the bike, in my opinion. Amy went through several options before settling on the same thing she started out with on. Jules was the only [safe] one sporting glasses - I'll have to check ebay for some cheapies.

I have a slight issue with a runny nose when I participate in sports, not sure what that's all about. It only tends to be an issue in close quarters training with people. I am very conscious of where I aim the farmers shot, but on a rare occassion, my aim and my sense of space is off. Sorry in advance to all my fellow swimming/running/riding buddies, for this season, in the event you are christened. Last summer I nailed a new friend Ralph - didn't realize his bike was so close to mine. Sorry Ralph - again. (Gosh that was kind of funny though!) And this morning, a fresh start to outdoor biking wouldn't be just that unless Amy was close enough to accidentally get a sample on her tire... or pedal... or was it your shoe? I know, it's gross, but it's just one of those things. Some people can't hold their excrements while exercising, I can't hold my snoogies.

I was happy to have gotten outside today if only for a short quickie, it felt great! Looking forward to another. As promised--the camera was in one of my pockets--- I did find out it is mighty difficult to snap a photo, a decent one, while riding. Jules really wanted to stop, but I thought an adventure, on-the-go shot was more appropriate.

Clearly, the over my helmet shot is not going to work.

I realize this is not much better, but you get the idea!

Thank you!

As of today, in the short time since I've announced the fundraising for the JDRF ride and started the blog, I have a total of $1765!! That's incredible! I am so happy about that and the support this has generated. It's amazing to see who is there for you, especially when you didn't even realize. Certain things affect people in ways you can't image or even dream of.

The purpose of this blog was/is to keep supporters in the loop with the training (which can always lead to good, funny posts!) and to give you an insight into life with a diabetic-from a mother's point of view and as a diabetic, a child living with type 1 diabetes, from Betsey. Some of the emails and notes I've received about how it has helped others in different situations and the perspective that they take from it pertaining to their own situation - I am in awe. I am so glad it can help in ways I didn't expect, nor attempt.

Thank you for reading, thank you for contributing and thank you for caring. It means so much.

Fitness Apparel

One of the things I can always giggle about is how far we've come with our athletic attire since we started our whole mess with triathlons and endurance events. By "we" I mostly am referring to Amy, Jen and I. There are others involved in our group that we train with on a regular basis, but when we started, the 3 of us were a trio and planned our training around each other.

The idea of swimming, really swimming, face in the water, freestyle stuff was sort of daunting, to say the least. We didn't know how into it we'd be and how sincere our level of commitment was, so we decided for one of us to join down at Saybrook Point Inn and Spa and we'd all use the same card for the membership, just as a tester. Now, the indoor pool at SPI is about the size of a puddle, and we apparently needed to work our way into the time slot at 5am down there, because there was a group of women (well, 2 women) who "swam" there on a regular basis. Since the pool was in fact the size of a puddle, there wasn't much room for anyone else. Especially lap swimming, which, of course, is what we planned on doing. Lap swimming. In this pool- the size of a puddle. (Looking back, I know those women got more than a chuckle out of us every day when we left.... after our 15 minute "swim.")

So we showed up the first day, Jen and I in preppy little tankini's, completely wrapped in towels because it was the end of winter... Amy in her bikini! We announced we'd be training for a triathlon -in this puddle- and would they mind if we joined them? The two women looked at each of us with the up and down, then to each other..... then in the pool, sizing it up in their minds and the 5 of us fitting in there... reluctantly they agreed, and in we hopped.

First of all, I could not swim. I could swim, like get from here to there with some sort or motion I used with my hands and feet flapping type of thing, but it looked so pitiful. At one point, one of the women (not the one I bumped into) asked me if I was trying to swim for speed or to keep myself afloat. Instead of offering to help me, she held on to the side of the pool and watched. It was entertaining, as I now know.

Amy was on a mission in her bikini, 3 strokes from one end to the other, and back... breaking for 5 minutes to tell us what hard work it was to swim.

Jen was contemplating a different suit because she was still nursing and the top was a little uncomfortable, plus, the pool was so small, and she thought we should try and -get this- lock our feet to some bars along the sides of the pool and just do the arm motion for the whole swim/workout time. We actually tried it. I almost drowned.

So then we graduated to the YMCA and bought swim caps and goggles. The first day with swim caps and goggles, the 3 of us stood in the locker room, squeezing our thighs together while laughing for a good 10 minutes. We all have really long hair, so we had to put it up in buns, and there was this protrusion of matter jetting out from the backs of our heads, underneath a very fitted rubber cap. We looked prehistoric and ridiculous! The googles added a new dimension of coolness - what those things do to your eyes is wrong on so many levels. I can't believe there hasn't been a better invention for swimmers. Just plain wrong. So of course, we tried the whole goggles-suctioned-so-tight-our-eyeballs-bulged.....We tried the swim cap on over our eyes and goggles on top......We had Amy do the ear-out-of-the-cap look because, well, her ears have a mind of their own in the swim cap.

It took us some time to get over that look. To be honest, I don't know we're really over it now. Today, when I stop at one end of the pool with one of them to chat about something, I still have a hard time looking at them through my goggles and not snickering.

We eventually moved to open water swimming, and actually bought "wetsuits" from the dollar store.... 3 matching "wetsuits," matching goggles and swim caps. Wow.

This was us in Niantic doing a swim in the waters the race was going to be in, in our dollar store "wet suits" and matching caps.

The same story applies to our biking gear.... we started out on our mountain bikes with baby seats attached. We'd meet in the wee hours of the morning, throw a helmet on, and pedal our hearts out around and around town. No hills to speak of, but man was it a workout. We were pedaling so hard on those things, the screws came loose on the baby seats and as we rode, they seats shifted from side to side. We were super cool on those bikes-we thought we were really bikers. No joke.

Here's Amy at the Niantic Tri on her brother in laws paint splattered 80's tri-bike. A HUGE improvement from the baby seat mountain roadster!

So as we improved our level of fitness and got closer to the main event last season, we adjusted our apparel and buckled down and even bought bike shorts. It's amazing what a difference a Speedo suit, good cap and goggles, bike shorts and decent bikes makes for a good day of training.

This whole post came to mind after receiving an email from our JDRF Chapter Leader. Included in the welcome email was a .pdf file with some apparel we can purchase for our ride and as part of the Chapter Team. The one thing that sent me doubled over in stitches was the "Coach Bib Short set" that our Coach could wear, if he so desired. I mean, seriously, who wears that stuff?? I can not wait to get out on the road with my camera and document upcoming swims, rides and runs. Can't wait! Half the fun of all this is the group of people and the memories made along the way. And the apparel. I wonder who will be the first in the one-piece bib set this year.....

Loaf it!

Daybreak

I used to wince at the idea of being up super early and getting my daily dose of endorphines up and kicking. I was an afternoon gym girl. Until I realized what mother nature offered to the select few out at day break. It's almost a reward, really, for dragging yourself up and out of the cozy sheets and wiggling into workout clothes, eyes barely opened, limbs barely cooperating. I can't tell you how many sunrises I have witnessed over Long Island Sound at the wee hours of the morning through the summer - everything from crystal clear perfect mornings, to overcast with the sun aching to burn through the clouds, foggy with mist coating my eyebrows, warm rainy mornings, humid stagnant heat -- they're all different, all exhilerating. Colder months in the early morning are not as fun, nor as often because the light comes later and I have a tight morning schedule in which to get my "free" time in. That's not to say they are any less rewarding on the days I am out in them.

Recently I took my camera and tripod down to Knollwood and captured the sunrise over the Sound. Wow. There was a slight cloud cover against the horizon in NY so I didn't get the sun actually breaking the surface, but rather seeping through the clouds into her glory. It was c-o-l-d on this day, but you'd never know it from the pictures. The sun looks so warm and balmy. It could easily be mistaken for a sunset with the warm tones.

These are the sights that keep me going in the early mornings; whether it's on a bike or on my feet. A little extra umph. Loaf it. Although, our 7 mile run this morning with the wind whipping at us for probably 5 of the 7 miles around the beach loop - felt like one long hill - the "warm" sunrise wasn't quite enough in mid-March to give me the warm fuzzies like it does in the heat of the summer. Soon....

Happy 15th Bean!

Sledding in Old Lyme.
(She looks like she was really going fast, truth is, she wasn't!)

Christmas Ball, 2008.

Betsey's oldest sister turns 15 today! First day of Spring, new beginnings. Such a great day! It was a toss up... good picture vs. bad. So we opted for both!! :)

Friday 5 - things I hate about diabetes

**In Betsey's words - 5 things she hates about diabetes:

There are so many things to hate about diabetes. I'm going to list 5. There's more than 5, but for right now I'm just doing 5:

1. I hate to test. It annoys me. Especially because i have to do it 7 times a day!


2. I don't like when I have to count out the serving size for everything. I always am the last one finishing.


3. I hate having ketones. I get shaky, sick, and a little tired. Oh, and very thirsty!


4. I don't like being high at dinner or lunch. I don't because then I can't have dessert. I'm the only one sitting at the table watching everyone slurp down their ice cream or munch on their cookies!


5. Last, but not least, I absolutely, positively HATE when people ask all those silly questions! "Is that a phone?", "Does that hurt?", "Can you have cake & ice cream?"

Sensor Readings

Betsey wears a Continuous Glucose Monitoring System (CGMS) that basically reads her blood sugar for her, through interstitial fluids. Interstitial fluids bathe and surround the cells in the body. It is the fluid in which materials are exchanged between the blood and cells. The monitor is a transmitter the size of a quarter & looks like a sting ray that she attaches to a catheter that we insert into subcutaneous fat (fat that lies directly under the skin.)

It does not take the place of actually testing her blood sugar on her fingers and getting a blood glucose reading, nor is it as accurate. It does help us to see what happens when she is doing other things and not testing; like after she eats, during sports and most importantly, while she is asleep. It reads in "real time" - every 5 minutes a number is updated to the pump and a graph is displayed showing her blood sugars readings right on her pump screen. The pump also gives a warning when she is going to go high or low, and she is supposed to (key words!) adjust or treat accordingly.

It is very accurate for us once calibrated and we rely on it every day and at night for blood sugar readings. I upload the readings to the Medtronic Minimed site (Betsey's insulin pump manufacturer) as needed and if I see a trend that needs some adjusting to her pump settings, I contact Yale and we go over the readings and discuss how to adjust.

We also keep a detailed log of her numbers. Her sensor readings and her blood sugar readings are very, very close. I love it!! It provides very valuable information and I am so thankful to have her wearing it. It brought her HbA1c down dramatically over 3 months time.

Below is a graph of Betsey's blood sugar readings in a 24 hour period, for 7 days. The different colored lines depict different days. The big green bar is her ideal range--where we want her blood sugars for optimal health. That 'off the chart red line' is the day she woke up recently and had the ketones and was sick because her battery had died in the pump!



As you can see, even with this wonderful technology and our constant tweaking and daily logging, it is a struggle to keep Betsey's blood sugar in super tight control. Every day is different, every day brings new challenges. And every day we hope it's the last day for type 1 diabetes.

Betsey's Turn-The Friday Five

Betsey and I are amazed at the amount of hits this blog has gotten since sending out the email about the JDRF ride! It has had almost 400 hits in less than a week! I hope all of you who visit here forward out the blog link to everyone in your address book for 2 reasons: 1-to help donate to the JDRF ride so we can reach our goal of $3000, and more importantly, 2-to raise awareness about type 1 diabetes and the "real life" of a child who suffers from this chronic disease.

(FYI-type 2 is totally different than type 1-another post one day for that business!!)

Betsey has seen the few comments that have been left by her friends and she is willing to participate in this blog.... minimally. For those of you who know Betsey, she is very quiet and reserved - in public. At home, she is our loudest, most outspoken and verbal child. I kid you not.

Because of such great response to the blog, we will be starting the Friday Five this week. Once a week, on Friday's Betsey will give her 5 thoughts on something mostly to do with diabetes. For example, "5 things I hate about having diabetes." Your thoughts on what you'd like to know about Betsey and diabetes are welcome and she'd be happy to incorporate your questions into a Friday Five one week.

Stay tuned...