Last Night at our house...
Me: assume the position, kiddo. Which side?
Noah: the right, this time.
Me: you ready?
Noah: not yet...(deep breaths)
Me: ready now?
Noah: hold on...(a few more deep breaths)...okay. OW!
Me: honey, I'm sorry. (eyes filling up) I'm sorry you have to always do this crap.
Noah: It's okay. I have to do it because diabetes just came and got me.
Noah is now a camper. Diabetes camp, to be specific. Being his first time, we had no idea what to expect, but it's been the talk at the dinner table here at our house for months now. Wondering what the cabins will be like, and where all the other kids will be from? Will the food be good? What about the weather? Oh, the weather. The darn rain that has been plaguing us here in New England for the better part of a month straight put all the other worries to shame. Well, all the crossing of fingers must have paid off, because Sunday when we drove down to the camp, it was a gloriously sunny, warm, and DRY day.
No Rain.
We ambled up to the office where we could see counselors and kids milling around...some with pumps and tubing precariously hanging out in the breeze...some not. I looked at Noah, and saw his smile of understanding and recognition. Even as we went through the check in process, and he got to know his cabin mates, you could the bonds of familiarity forming.
After saying good-bye about 100 times, and taking the long drive home, my husband and I sat in our too quiet house wondering if Noah was doing ok. We recapped the day, and talked about our observations. My husband put it perfectly when he said this to me:
"Seeing Noah today at camp, reminded me of that Blind Melon video. Remember the one with the little bee girl? She danced and got laughed at...went all over the place trying to find where she fit in. Finally she found other bees doing their dance, and she was so happy. That's kind of like Noah today at camp."
Noah has found his bees.
This subject has come up since day one, when the pediatrician sent us into Boston's Massachusetts General Hospital, we've been asked a million times since that day..."why not Joslin, aren't they the best"? My response is always the same "we went where they told us".
Sounds lame, but we were newbies in the world of type 1 diabetes, and being led on a medical leash was actually a welcome thing in a life that felt like it was spiraling out of control at that particular time 3 short years ago. MGH has been good to us. They taught us a lot. Got us through the "boot camp" phase of parenting and clinical care of a newly diagnosed type 1 child. We love the staff there, they are always available to call you back if there's a problem, and we are incredibly blessed and lucky in geography to be a stone's throw from some of the best medical facilities in the entire country. (wait for the big "but")...
BUT, It's an adjustment when the doctor we've been working with, and getting to know is suddenly gone. Being a teaching program, Noah's on his 4th doctor in 3 years. This past Friday, it happened again. When Noah's name was called, it was by yet another "new" doctor. Introductions and small talk were made as we snaked through the maze of hallways on our way to the exam room. Jon, Noah and I took a collective deep breath and entered .
She was nice enough, I'll give her that. But zero bedside manner, and to me- especially when the doctor is working with children- is a huge problem. As she rifled through tons of paperwork, looking for the one with Noah's pump history printed out on it, I could feel Jon tense up as he sat beside me. She positively grilled us, which is fine- we got a weird feeling from the manner with which it was done. Later, over lunch Jon and I would discuss how we felt like we were in trouble, sitting in the Principal's office , afraid to say the wrong thing that would surely result in detention.
I dunno, it just felt bad and uncomfortable. And they didn't DO anything. I feel like when we speak about certain issues or concerns, there's no feedback. It's frustrating because even though we've been in this life for three years,we know there's always something new to learn. That being said, don't you think some new information, or helpful advice would be offered up from time to time? yeah, I thought so too, but it doesn't happen there. It's situations like Friday, and the switching of doctors over the years that have us wondering if a change from MGH to Joslin might do us some good.
I've always been the kind of person that hates to rock the boat, I don't ever want to offend anyone, but this is my kid's health- heck, his LIFE, at stake here. Why not expect the best? Why not leave no diabetes stone unturned? As parents, I feel we shouldn't allow ourselves to get complacent. We're going to get the wheels in motion for the long overdue switch to Joslin. I'd welcome any advice on what to expect from those of you who have had to break ties with a doctor, or switched from one hospital to another.
On a side note, we had a really great time in Boston after the appointment was over. We did the Boston Duck Tours. It's one of those touristy things you have to do at least once. It was the perfect day for it, and it was educational and fun. Noah even got to steer the duck boat!
Noah animatedly bounces ahead of me, the Tigger to my Pooh-Bear. "Mom, I need mouthwash", he says, brightly.
He grabs his brand as my hands are already full with a few womanly necessities (tampons?- check! razor blades?- TEN BUCKS!!).
Bounding ever further away, he rounds the corner by the pharmacy and stops at the display of the varied blood glucose meters on the shelf and pokes at the buttons.
I finally catch up, still grumbling to myself about the outrageous cost of personal hygiene products, and say to Noah jokingly, "looking to trade up"? We both laugh at our inside D-joke, as a man that was waiting nearby for his prescription interjects,"hey buddy- those aren't Game Boys" (chuckle, chuckle).
I saw a flash of red, and instantly calmed my instinct to snap, "thank you, but he knows that all too well". I smiled and bit my tongue.
Without missing a beat, Noah answered him with, "those are blood glucose monitors, and I'm type 1 diabetic- I have an insulin pump."
The man smiled kindly at Noah and replied "you are very lucky". (chuckle, chuckle again)
I honestly don't know why, but hearing him say that enraged me. LUCKY?! I wanted to scream, "sure, buddy!! If you think lucky is a fucking busted pancreas out of the blue at age six , lancing your fingers until they bleed 10 times a day, having to be woken out of a sound sleep to choke down a juice box, shots, long needles inserted into your ass for a site change every 2 days, cutting activities and recess and sleep -overs short because of site problems and crazy blood sugars, feeling like you're so different from everyone else even though everyone tells you you're not but you're 10 years old and no dummy, yeah if that's lucky, then he's the diabetic with the pot o' gold at the end of the fucking rainbow."
Instead, with my eyes full and shimmering in the fluorescence of CVS, I smiled in return and lied, "yes, he's very lucky"
We all love the Deltec Cozmo pump. It's super easy to use, and making adjustments is as simple as programming say, a cell phone.
In 26 months since the Florida Incident, we've had zero problems with the pump, until the other day Jon was doing a site change, and noticed a crack in the pump casing. It hasn't affected the way the pump works or anything, but we don't disconnect Noah for swimming, or the beach and that crack would let water in for sure.
I made the call to Smiths Medical, and arranged to have a replacement pump in slate grey sent here next day air.
It arrived yesterday and you would have thought Santa came early! Noah hopped around the kitchen while I undid the tape on the box to reveal...
A purple pump. wah-wah-waaaah.
I had to laugh, because Noah looked so comically offended. His face was a priceless mix of confusion and dibelief that the Cozmo people had overlooked the fact this pump was meant for a macho boy of 10. Even when I called customer service, the nice woman I spoke to chuckled, and said, "oh no, he got the "Barney Purple one"!
Much to Noah's relief, a new pump in a color more suitable to him is on it's way.
I would have posted this sooner, but i have been too burnt/recovering/busy/tired up until now-it's like the first time I've sat down in a week!
On Memorial Day, my mom, Jon, Noah and I went to the beach for the very first time this season (as evidenced by Noah's kind of pasty complexion). It was the most amazingly perfect weather that day. Warm, but not too warm. Windy, blue, bright, salty and sandy.
As an added bonus, the Cozmo held strong through all the digging, boogie boarding, and salty water flung it's way, and we had no problems getting back into our old D-beach routine.
Find more videos like this on Tu Diabetes - A Community for People Touched by Diabetes
During our meeting in Boston with Manny and Andreina from TuDiabetes, Noah gave a little interview on the Swan Boats. He talks about life with Type 1 diabetes.
First, to get it out of my system:
New England Patriots 11-0!!!!!
Thanksgiving blood sugars for Noah were unbelievable. I mean, spot on perfection even with all the rich food, and pie and constant grazing throughout the day. There was almost no effort involved (a couple things we even guesstimated on the carbs) and never did they go above 150. I couldn't believe it!!!
I wish every day with diabetes for Noah could be as effortless as that day- last night a 327 came along and bit us all in the ass. We were all taken by surprise by that one. I sometimes wonder if his BG meter just spits out random high numbers, so I will have him re-test and use more strips and have to buy more, making the strip companies that much richer...
Conspiracy theories aside, save for that weird high, it was a great long weekend full of family and friends. As we recapped the events,my husband and I were saying how carefree the d- management was this year, and it dawned on us that it's Noah's first Thanksgiving on the pump. It seems like he's been on it forever, but it's been just under a year.
It's a bit of a sad feeling of acceptance. That thing that was so foreign and scary to us not so long ago has become a (sometimes)seamless and integral part of daily life for all of us. Is has become so routine.
Just like they told us at the hospital - like brushing your teeth, it will become automatic, and they were so right.
This is our life, far from flawless, but I believe it's the way we are meant to live it.
I am not a scholar by any stretch of the imagination. Nor do I have hundreds of thousands of dollars invested in higher education. No, I am your average High School graduate with some street smarts and alot of "life experiences" under my belt. I am not an eloquent blogger, turning the everyday into poetry. My words and stories will probably never win any literary kudos. Some of my favorite d-bloggers are geniuses at this and I wish that I could be even a smidgen like them, but I can't mold myself into something I clearly am not. I write about life, and I try to be as honest as I can.
The ugly bits are sometimes all I can think about.
Noah's one year pump anniversary is coming up ,and I've been going over the last year in my head. I would love to say that it's been nothing short of awesome, what with the new found pump freedom and such. Should be no sweat. It was a tough transition and only in the past 4 months have we really been able to relax around here.
To be frank, I can be a bit controlling and picky. things have to be a certain way. In trying to make everything in our family life run perfectly smooth , I can be quite the bitch if something does not go my way. During the first few months of getting used to the pump, I was impossible to please. Now,to give you an idea of the kind of guy he is, my husband is quite possibly the best and most patient man on the face of the Earth. He is an incredible father, attentive, fair, fun and kind. As a husband, he is my best friend. I can truly call him my partner. I trust him with my life, and love him like crazy.
During this time, he was learning and trying to do his best. He slipped up a couple times while learning, as we all do. I was panicked, and took it out on him. I must have said a million times, "what would happen if I dropped dead tomorrow?!?!?! You would have no clue how to do all the D. stuff."!! I called him an ass under my breath, snatched infusion sets away from him in a huff, and instead of reminding him how it was done, made comments about how he "didn't even pay attention when the pump lady came to the house to teach us".
I was terrible. I was mean.
Looking back, it's easy to see I was clearly afraid I would be the one to screw the pooch, but instead of confessing my fears, I lashed out on the easiest and most convenient person -my sweet husband who was just trying his hardest to help our son. This is not the person I normally am. I spent my time from day one of the diagnosis trying to be strong, brave, tough, whatever. I became a bully to the one person I promised to trust and support forever.
If there was a way to go back and change how I acted in those situations, you betcha I would go.
I guess this is a public apology of sorts, and to my sweet husband I say, "I'm so sorry, and I love you."
Oh boy, I hate change. So trying a combination bolus for the first time over the weekend for Noah, and his 3 slices of pizza (how that boy can stay so skinny with that appetite is beyond me) had me sweating and palpitating all over the place.
Even trying to explain how a combination bolus works is enough to get me all flustered. I know the general idea of it, but I could never put it into words the right way - I'd embarrass myself.
It was a tense few hours after that bolus. How could I possibly trust myself and a machine to do this right? What if I screwed up the carbs? Or the timing? I set it up to give him half the bolus right away, and the other half over a 2 hr. period. I did this based on his history of being high a couple hours after high fat stuff (like pizza) and crossed my fingers.
I made the poor kid test at least 3 times in 3 hours. He did it without complaint, but I think I might have caught an eye-roll the last time.
I had no reason to be worried...it totally worked. I'm no longer afraid of this feature, and will be using it from now on.
Noah got a surprise in the mail yesterday from the company that makes his insulin pump. A cool little art set with double-sided markers and pen. We weren't expecting this at all, and it was such an excellent alternative to candy.
Last week, Noah, my mom and I went to Florida to see my grandfather for his 80th birthday. It was the first time we went away from home since his diagnosis (yes, first trip in 2 years- I'm a nervous mother) and needless to say, I was a little frantic with the preparations.
I packed and re-packed. Checked and re-checked. Government websites were consulted to make sure we could get through the security checks alright. The Freestyle attached to the Cozmo set the metal detector off twice, which resulted in a pat-down search. eeek!
The one thing that we were most afraid of, but thankfully were extremely prepared for, happened. TOTAL PUMP FAILURE.
I read that literature about a gazillion times to make sure swimming wouldn't hurt the pump. I went over the casing with a fine-toothed comb to see if there were any cracks, scratches, etc. We even did a test run in the shower. First day in the pool and the thing pooped out on us. dead. done. finito.
Oh crap, no!! After a brief but teary visit to the bathroom I gathered myself together, and called the 800 number on the pump. I love the Cozmo people- the woman I spoke to was so calming and helpful as I explained my situation of being away from home and freaking just a bit. She took down my grandparent's address and said UPS would deliver by 1:00 the next day!! I thanked her about a gazillion times, and dug out the spare glucose meter, and syringes ...glad I brought them!
The new pump arrived early at 11:00 the next day! Less than 24 hrs and we were back in business. It wasn't a total disaster, but it very well could have been. Being prepared saved us alot of headaches .Not to toot my own horn, but being a nervous mother has finally paid off!
So here's a checklist for travelers who may be embarking on their first trip after a pump start. Feel free to comment with your own helpful hints!
1. Letter from your physician explaining your need for medical supplies on the plane.
2. batteries
3. alcohol wipes, lancets, infusion sets, cartridges, etc.
4. INSULIN
5. syringes (even if you don't use them, keep them on you for emergencies)
6. Write down all your pump settings. Even if you have a photographic memory, believe me, when you're stressed you won't remember squat.
7. glucagon
8. stash of snacks for lows...those little juicy juice boxes are perfect at 15g carbs and we found these gummy things -Sunkist Fruit Gems- you can get them in the bulk candy bin at the supermarket. They are awesome for travel and are individually wrapped so you can trow them in your bag, pocket, cup holder.
9. Clear plastic zip-top bags to put it all in.
Lastly, carry on everything you will need. Don't think you can get by without your supplies with you at all times. Test often and you will have a wonderful and safe trip with minimal snags.
